Reducing dosage of Pred | Arthritis Information

Hi All my PMR Friends:

A lot of you talk about reducing the dosage of Pred over a period of time. July 24th the doctor put me on large dose 50mg for one week to see if the extreme pain in my arms was PMR. The pain went away after 4 days on the 50mg Pred. I had suffered 8 mos of terrible pain since Nov 06 in my right shoulder and arm. I did post my history a few weeks ago (fell, broken ankle, thought the pain was from the fall). Anyway......after the week on 50mg the doctor reduced the Pred to 25mg for two weeks and then 20mg for two weeks. At 20mg the pain returned, although not quite as bad. Now I am back up to 30mg. I have a script for 1mg as the doctor thinks coming down by 2 or 3 mg weekly will control the pain better. My question is..does anyone have a history of reducing the Pred and how long did it take to get to 2.5 or 3 mg?

Hi Missy

I started on 40mg last december,dropped to 20 after 3/4 days -pain
came back - back up to 40, and than dropped 5mg at a time down to
20mgover about a month. After that went down in 2.5mgs to 12.5mg
and than went in 1mgs to 10mg. This took to the middle of Feb. then
went down in 1mg to 7.5mg, and from 7.5 I have gone down in 0.5mg
drops. I am down to 3.5mg and tomorrow I am planning to drop again,
but will follow Ragnar's advice and alternate 3.5 and 3mg days for a
week. I've taken the tapering very slowly from 10mg, and have adjusted
it depending on my activity level eg I stuck on 4mg for 6 weeks because I
was away a lot and had lots of driving to do. So far I haven't had to go
back up after my initial problem at 40mg.

Most people on the forum seem to have started at a lower dose than us. I
was scared the second time I got to 20mg, because I thought all the pain
would come back again - but it didn't. I think that the pred had had that
bit longer to reduce the inflammation, and so it was OK the second time
round.

good luck

ps you can also get 2.5mg tablets, which give you more flexibilityHi Missy, I started at 20mg in March of this year after more than a year of
steadily increasing pain and diminishing energy. My daughter finally told
me to see a doctor. The doctor found I was anemic, with low thyroid, put
me on Thyroxin and iron and gave me a vitamin B12 shot. None of it
helped. Finally asked to see a rheumatalogist. I was put on 20 mg of
prednisone. and the effect was immediate; I couldn't believe how good I
felt. My rheumy reduced the dosage by 2 1/2 mg every two weeks until I
was at 10 mg, and I was back to pain and extreme fatigue. Back up to
15mg, with dosage reduction by 1 mg every week to 10 and again back to
pain and extreme fatigue. Back up to 15, stayed at 15 for three weeks,
dropped 1mg, and holding at 14. The pain and stiffness are now
somewhere between great discomfort and misery, but the fatigue is
overwhelming. Can't do any of the simplest things for more than 20
minutes and then have to lie down for 20. I am one of the few who
doesn't have a low sed rate, my rheumy based his diagnosis on the very
positive reaction to prednisone. Don't know where to go from here, will
see my rheumy on the 20th.

Hanging in there, Libeth . The picture you put in my head will
keep me laughing all day!!

At the moment, I think the anemia is worse than the PMR. How much iron
do you take? So glad you are feeling better.

LibethBetsy,
Go for it! Maybe the flirting will you give you more energy? But I guess the
question is: HOW HOT IS HE??? Is it worth the energy expediture? :) Talking
about hot guys seems to be a sign of getting better anyway? Maybe... I
hope....

Why do I think bleedng stomachs may show up in a play somewhere?

The exhaustion is the thing people seem to not get even more than the
pain...

off to work
pgrBetsy,

So glad to hear that the procrit is finally kicking in, and that you are feeling better. Yay!!! The bit about flirting with the old guy at church is too funny!!! Let us know how it turns out.

Hi All,

It's good to hear Betsy in good spirits!

Reni, I haven't been to Bend for a long time. It sounds like you really had a good time.

I was wondering how long your doctors kept you all at a level of pred that reasonable controlled your PMR symptoms? My doc just said she will keep me on 10 mg's for 6 months and if the blood tests warrant it slowly taper after that at 1 mg per month. I understand that issues might occur that require it to be raised also but was just wondering how long you all stay on a decent dose before tapering? It sounds like everyone who tapers too quickly has bad reactions. I guess it's hard to know what is too quickly for each individual.

Kathy

Kathy,

One of my former rheumies had me on 10mg for a couple months, and then I started to taper. I started feeling pain again at about 8 mg, but kept tapering anyway. When I talked to my current rheumy about my med dosing and how long I was on it (1 year for pred. and 6 months on plaquenil), he said I probably wasn't on pred. long enough. He said most PMR sufferers need to be on pred. for about 2 years to really knock out the inflammation. Guess that other rheumy was concerned about my rapid weight gain (36 lbs in less than a year, which was more than a quarter of my pre-pred weight - quite a huge jump really), and didn't want me on it any longer. Oh, well. Now, I do think it is burned out and whatever aches I have are just older age, and maybe overdoing things, although I still wonder about my elevated sed rate. Will ask my rheumy about that again when I see him in a couple of weeks.

Good to hear from everyone here.

Reni

Well, Since you all think so, I will give it my best shot. Nothing like a bunch of cyber hussies to steer you right. My husband died two years ago in May, and I've never done such a thing. Do ya'll think they put some testosterone in my Procrit or something? Can't imagine why I would subject myself to this sort of craziness.

Libeth, I took 400 mg of iron, and it finally did get within the normal range after months. My problem was I just didn't have enough blood. So the Procrit builds red blood cells...and makes you chase after old men at church. So, don't take it unless you have to.

I'm not a sinner. I'm just morally impaired.

Thanks for the laughs and smiles, I needed them! Betsy, I can't believe you have been grieving losing your husband at the
same time you have been dealing with the PMR - my heart goes out to you.
We want a description of this hot dude, we need to be sure we approve and
he is really worth it (hehe like you need our approval!).

Reni, your trip sounds great! And you did sooooooo much! How did you feel
after? The walking, hiking, up & down over things seems to be the worst for
me.

Kep laughing all!
pgrPgr555,

I could definitely feel the cave hike in my thighs and hips the day after, and I am still catching up on my sleep. Even though I seemed to sleep pretty well at the Inn, I have been exhausted since we got back (of course, I did do 3 loads of laundry the day we got back, and have been walking with mt neighbor since, so may have overdone too soon). I still struggle with fatigue issues, but that may be due to hot flashes - I'm getting them again at night for some reason. I keep waiting for Oregon Health and Sciences University to call me about their hot flash study. I put my name on a list to do a clinical trial over a year ago, and they still haven't gotten around to doing it. It sounds interesting, and no drugs involved, plus they would pay 0 for just an overnight stay, if I qualify. They are wanting to check estradiol levels in the blood to see if they spike or whatever, and maybe disturb sleep, even if you think you've been sleeping well.

Anyway, hang in there, because it does get better after time (just how much time? you guess is as good as mine), and you will be able to do more walking and hiking. I'm still not 100%, but I'm not as young either. Betsy,

I'm so sorry about you losing your husband not so long ago. You HAVE had a terrible time the past couple of years. Hi Betsy, hugs from me too. I so admire
your courage and your humor. What church do you go too?

PGR, the hot dude at church is a retired nuclear physicist. That ought to pass everyone's test. I couldn't even spell it. I'm just sort of having fun with him. He seems a little overwhelmed. You all know how I love to act crazy and funny! Sometimes he just shakes his head and smiles.

I hope you are all doing well, and I love you eveyone for your concern.

Ok Betsy, as long as he is smart enough for us

You are a true inspiration to us... to have the humor and positive attitude (I
know but most of the time...) with what your past 2 years have held! Hang
in, you will feel better.
pgrI am amazed at what some of you women achieve despite your illnesses, and I am ashamed of myself for moaning about my situation the last few days. Betsy, I wonder about the connection between a traumatic experience/loss of a loved one and the onset of illness. Maybe intense emotional upset affects our immune system. This happened to me 5 years ago, and I sometimes wonder if PMR is the latest instalment of physical expression of emotional pain. Hugs to all (((((())))))

Chico, Some of us on the forum deveoped symtoms after after traumatic events. But, it seems like many more had just had viruses or a flu shot. We had a thread about that at one time. My husband died 2 years ago in May, and the symptoms started almost immediately. I wasn't diagnosed for 9 months, so I've been treated for 1 yr and 7 months.

If everyone on the forum responded you would be amazed at how many had viruses or flu shots a day to a week before onset.

Two years ago, in November, I was diagnosed with pericarditis. After
recovering, more or less, in January I started working on a large
printmaking commission, lasting into May, working every day at the
press. Then in late summer I worked on another, extemely difficult
project. It was after that my daughter told me to go see a doctor. Was
diagnosed by a rheumy in March. I am convinced all that combined, (also
had a flu shot last November) resulted in PMR. I think I have to go back, a
day at a time, to where I was physically before the pericarditis, and then
starting healing from there. So what am I looking at? Another year,
maybe two. Aside from the physical misery, the mental misery is
torment. At the moment I am trying to find some way of making art that
is the least physical. Writing the play does help, but it is not enough.

LibethSorry about the clenched fists and the scream, but sometimes.......

Libeth

Betsy, you are just acting like a normal woman in good health. I'm so sorry to hear about your husband. I think you are very courageous! I met my current husband at age 50 and cant imagine how I would have dealt with this illness alone.

You just enjoy feeling better and live your life to the fullest.

Kathy

Thank you MrsDuck. It was a second marriage, but we had 27 years together. He was my soulmate.

You know, I sort of thought the same thing you did. Maybe I'm just feeling normal. OMG! Normal seems so dangerous. I'll have to get used to it again. I surely am thanking God for it.

Hi All:

What a wonderful variety of topics and laughs this thread took! I just came home from a few days in Northern Ontario (I live in Southern Ontario) and signed on to see what input re how long to get off Pred and I find a great conversation about being 'normal' women! Go for it Betsy. I meet a wonderful man on the Internet just before I retired in 2004. He was from California. We did get engaged had a wonderful 15 months of traveling up and down Southern California and Hawaii. No we did not get married, but still keep in touch. The move from Canada at my age 68 (and considering the health coverage in USA compared to what I have in Canada) it just wasn't going to be the best move. However, we are sill life long friends. I guess my point is.....even if it doesn't turn out to be a committed relationship.. it is fun and you have a great friend to gain. Go for it, you have a good track record it appears with a happy marriage.

Also, everyone, thank you for your stories on how long your were on Pred, your dosage and how you reduced your dosage. I am still at 30mg, but starting tomorrow will reduce to 25mg then after 2 weeks reduce by 1mg. I have only been on Pred since July 24th. I am getting very bad headaches, so I will ask the doc about GCA.

Thanks Missy, You are right. This could really complicate my life or it could be a real blessing or both. We'll see. Thanks for sharing your story.God love you all, hoping you have a great weekend...

I haven't been posting lately, off all my meds except for Aleve and some rub for my neck pain, other than that I am able to get around, however, I know I'm kidding myself into thinking I am in remission.....Some days are hell and the pred. looks good to me, but still just doing the above....Been very busy working at our Church, mostly assisting with the receptions after funerals...make sandwiches, desserts, set up the hall, and keep on in the kitchen until I'm too pooped to participate.

Brich, you are so funny, an older gentlemen came up to me yesterday at the kitchen and said "tks for the lovely coffee, tea, food, great service from us 5 women who were working the funeral, and he said and "I love you".....I haven't been hit on for years (I'm 75 and I'm sure he's in his 90"s) my hubby laughed as he said I had blushed.

Gotta keep on smiling in this life, pain interferes with that alot. again have a great weekend and keep on laughing....

with love Good for you Rose, getting hit on! You just go, girl." I felt kind of silly acting flirty with this guy at church. It's been so so many years. But, I found it's just like riding a bicycle. It all comes back real easy. Women are born manipulators anyhow. I'm really having fun with it, but my daughter, sister and best friend really think they put something in my Procrit. They just cannot believe what's happened to me. I love it. Rose,

Good to see you on again. And glad you are off the medication, though I know it must be hard. Does anything else help with the pain? You and BEtsy are such an inspiration -w ell, all of you here are inspiring. You do so much, and keep on going and laughing. I think it's great that you all are getting "hit on". Enjoy it. Anoyone remember how embarrassing and awful it used to be to get the wolf whistles and sleazy remarks from construction workers when you were a teen, and then hating it when you got older because no one did it any more? Haha. Or maybe you still got the wolf whistles. Just seems like one hits a certain age, and the flirting stops, at least for a while. I'm glad you can have fun with people now. That is so good for you! Enjoy, enjoy!! Hi all, good to hear you joking around, shows we are still alive Reni,
what you are describing with the lower back, hps and exhaustion is what I
felt with the PMR pre-pred and Dx. That was why I thiught it was just my
back problems in the extreme. Glad you can keep going!

Chico, I read that years ago... we should do a book group of hat e are
reading... any good books lately?
pgrChico,

Yes, fried green tomatoes are good )probably not too healthy with the oil you have to fry them in). I bread mine in Italian-spiced bread crumbs. I've never made green tomato pie, but do remember eating a piece when I was very young, and it tasted like apple pie. We aren't quite fall here yet, although it sure feels like it. The tomatoes are still going strong, and the strawberry bed is putting out a second crop. Even though they are June bearing, not everbearing, they almost always set more berries in September. I have 4 raised beds, 16'x4' and about 2 1/2 ft/ tall. I couldn't garden very well any more without them. With my back at its worst 10 years ago, I practically had to lie down to pull weeds - couldn't sit or stoop or squat for more than about 5 minutes without excruciating pain. Was always waiting for someone to call an ambulance, thinking I might have fainted in the yard. Right, I will try the fried green tomatoes. I am enjoying the book, and I also very much enjoyed two other Fannie Flagg books, Standing in the Rainbow and Can't Wait to Get to Heaven". I really love the characters, especially Elner Shimfissel, they seem to me to encompass all that I imagine is the really nice side of America! Your garden sounds very user-friendly Reni, it's good that you have something you really enjoy. Sadly, I don't really love gardening, but I do love fresh vegetables, and flowers, so that's my incentive to garden. I enjoy the feeling AFTER gardening, so virtuous! Part of the problem is the endless strain of keeping the critters out of the garden - the goats are the worst offenders, as they can jump the fences. Hope the lower body aches have improved or at least abated. And it's good to hear you have no arm problems. I am the opposite, wose on top than below!

Hey, what a co-incidence I just got a Mary Higgins Clark book from the library yesterday, its called "I Heard That Song before". I' ve read most of hers, I think. I must admit I usually read more English and Australian and local writers than American, but lately I've been reading more American, having discovered a few writers I particularly like.

Enjoy the last of the strawberries!
Returning to the title of this thread - After a month on 10mg, I had reduced to 9, as instructed by my rheumy. That was just over a week ago and I have had a not so good week with stiff and sore neck. I persevered, cos I thought this was what happened with tapers, and I gave it a chance, but today I decided to go back to 10mg and by this afternoon, neck is better. How can 1mg make such a difference??? Does this sound right? Anyone else had a partial relapse from 10mg to 9mg? or similar?

I read in one article that people who start on 10mg (as opposed to a higher start like 20), should stay on the 10mg for 2 months before tapering down to 9. I am staying on 10 for now anyhow, it seems to be the right dose for me, guess I'm just not ready for 9 yet.

Hi Chico, I started at 10mg in March 2006 and stayed there for approx 8 months then tried 7.5 -10- 7.5 ect for 2 weeks. Well that was the plan .. had to go back to 10 full time for another 6 months. The next time was sucessful! Then 7.5- 5- 7.5 ect for 2 weeks then 5mg up until now and I will stay at 5 at least until April 08!

I agree with Ragnar .. if you drop too quickly the pain ect returns. In answer to your question re staying at 10 for 2 months, seems to be far to fast to reduce from my experience. I was certainly not ready.. neither were my blood tests.. after only 2 months.

Good on you for going back up.. you know how your body is coping and as this horrid disease seems to take its own course with all of us, we have to be in control of having some quality of life.. even if it means having 1 mg more of Pred than your Rheumy instructed.

Hope I have helped and not hindered?

Hi Lyn, how's life across the ditch? Whereabouts in Oz are you living?

Thanks for the info, very helpful. I guess I am like most of us, really impatient to get off the pred, but it looks like long and slow is the way to go with it.

Hi Chico, life is good across the 'ditch' although we are still in the grips of a long drought. Need rain desperately all over Australia. Maybe global warming has arrived and its not just a drought? We live in Victoria, a city called Horsham, approx half way between Melbourne and Adelaide. The Grampians is a large mountain range quite close to us, although nothing like the huge amount of mountains you have in NZ. We have visited NZ 3 times and want to return to your beautiful green, running rivers, waterfalls and glaciers ect. Are you in the north or south island?

Hope you are having a better day today and tomorrow!

Love Lyn

I can't quite remember what 10mg to 9mg felt like, but it was round about
there that I started going down by 0.5mg rather than 1.0mg jumps, and that
helped a lot.

If you think in percentage terms, 10mg to 9mg is a 10% reduction. If we
keep going down in 1mg steps the reduction is a bigger percetage the lower
we go.

MargaretMargaret, thanks for the really helpful explanation - I don't have a mathematical (or logical!) mind, so it didn't even occur to me that 1mg is 10% of 10 mg, and when you look at it like that, it is clear that it is quite a significant amount. So when I go down again (dunno when that will be), I will halve a 1 mg tab and reduce by 1/2 mg. Hope you are doing OK now Margaret? Hope your holiday was a good one.

Lynn, I know where you are, it's nice down there, although I've only been to Adelaide once, but lots of rellies in Melbourne. Yes, the drought situation is bad in Oz, this is the longest it's gone on for in history, I think, isn't it? Maybe if this is how it's going to be from now on, some farmers in some areas just might have to let go and give it up. I live in the central North Island, and we tend to have a mountain climate, regular rainfall and so it's very very green all year. We live in a green valley overlooking the river and under the mountains, so it's very sheltered and peaceful, except when the mountain decides to erupt, which can be a bit alarming, altho it hasn't done since 1995! Hi Chico

Glad it helped - comes of teaching science for nearly 40 years. I'm down
to 3.5mg, and feel ready to drop to 3mg - but I'm going to follow
Ragnar's advice and alternate days of 3.0 with 3.5 for a week and see if
that helps. My Dr suggested that as well. I've got 2.5mg tablets, so don't
have to mess with cutting them up.

Thanks, my holiday was brilliant, and really good weather - amazing for
this summer in the UK. I was very tired when I got back, so I put of
dropping to 3.0mg last Monday until I had got back to normal (normal! -
with pmr?!) but I must bite the bullet and do it this week.

Your mountain sounds lovely.

Margaret

Hi everyone

I started at 20mg last October and after a few weeks started coming down by 1mg/week until I was at 10mg. Stayed at 10mg and even went back up to 15 when the pains came back. Have had a steady drop to 4mg which I kept going for about 6 weeks aand then dropped to 3.5 for 2 weeks and yesterday dropped to 3mg. I have had 3.5mg today as my arms were very achey and my legs were bad last night. I will alternate for a few days and then keep at 3mg for a couple of weeks before trying 2.5.

Hope you are all enjoying the autumn sunshine. We are, here in Kent. Had to have the log burner on at night, though.

Love Judi xx

Hi All,
     Chico, find it very interesting that you felt such a change reducing 1 mg.
     I thought it was all in my head, this is the third time this has happened to me, I reduce 1 mg of pred and within maybe 6 hours, not even, the pain and fatigue comes back with a vengence.
     I even expressed this to my children and they look at me like they think i am crazy. I did not do 10 to 9 like you did, chico but i did 20 to 19 for three days now and i can just about walk and neck is killing me. felt it the first day.
     Margaret, you figured it out mathematically, and that makes more sense. you think 1 mg is so small, but maybe it isn't, and maybe should try 0.5
     This is a very hard drug to get off of. I see my rheumy on tuesday hope he has a plan for me, mentioned some other drugs, humera or imuron, they are for ra, but he thinks they will help me.
    thanks for the info, chico and all now i know it is not in my head that i feel lousy just reducing 1 mg.
-----------------------Georgiana------------------

Greetings everyone in this forum. This is my first time posting, but I have
been reading it for a while. Thanks for your sharing, openess and humor
which have been a boost for me. Now I'm glad that I can contribute
something.
It is a real struggle trying to taper prednisone and so discouraging to
have
to go back up as I have had to do a few times since my initial dose of 10
mgs a year ago. I have been on 6 since July and have been told I may
never get below 5. My rheumy says to only try to taper 3 times a year.
He doesn't expect my PMR to ever be resolved.
I have learned through experience and research that tapering brings on
pred withdrawal which for me means deep and intense body aches,
extreme fatigue and weepiness. It can be more miserable than PMR itself
but if I can hold on a while(sometimes up to two weeks) the taper works.
I have learned to schedule it so that I have no major events or projects
going on at the same time.
I'm going to keep trying to reduce my dosage in spite of my dr's advice
because I really want to be off pred!

Keep smiling,
GeralynGeralyn,

What made your dr. think that your PMR to ever be resolved? Most of the sites I've read say it goes away, even without treatment in 1-5 years. Then today I read about autoimmune diseases, and this article said there is no cure for autoimmune disease. Remissions are possible, but no cure. Which leads me to wonder why they say PMR goes away after a while. Could it linger in a very mild form, or just go into remission for a very long time? Too bad there are so many unknowns in this category.

Georgiana, it's good to hear from you again. I keep you in my prayers. I hope your dr. can find another drug that will help you with the intense pain you have. And the fatigue. I'm so mad at myself. I saw my rheumy yesterday, and in the course of asking all these questions, I forgot to mention to him the fatigue I've been having lately. Hopefully it's just from an overbusy schedule and hot flashes interrupting my sleep.

Anyway, hope you all are doing all right. Geralyn, keep up the good work with the pred. reduction. Sounds like you've got a handle on things, even if you do get fatigued and weepy for 2 weeks. Take care.

Reni
Thanks Reni,

I know what you mean about the fatigue, you do sound like you have a busy schedule, i do not know how some of you do what you do, i am so weak in the hips and shoulders i can not do much, especially any kind of arm movement.

i know there are some cases where people have gotten better, but i have had this for so long, 5 years, i have my doubt about it going away and like you said there is no cure for autoimmune diseases.

Geralyn, welcome,   i also experience extreme achiness, extreme fatigue and the weepiness, did not realize it was from the withdrawal but that makes sense, hang in there, hope you feel better.
                                 Georgiana

Welcome Geralyn,

I hope you find this chat line as helpful as I have, I think you will. The
first thing I do every morning, with latte in hand, is go online to find out
how everyone is feeling, and what they are struggling with. The feeling
you are not alone is very supportive, and the information is better than
what I get from my rheumy, at least as far as the day to day living with
MPR goes.   I am now at 12 1/2 mg of pred, just down from 13. I will
hold there for awhile and see how it goes. The extreme fatigue is the
biggest problem, it comes in waves, and the only thing I can do is go lie
down for awhile. Is it the PMR of is it pred withdrawal? Maybe it doesn't
matter. At least I am better than I was. I am trying to stay hopeful.

Take care, be hopeful

LibethHi Everyone....I started on 30mg Prednisone Oct '06 and today dropped down to 1mg after a long and ardous journey. Just like Geralyn, the withdrawal is the pits for about two weeks...extreme fatigue, increased pain and easy tears. I supplement w/200mg ibuprofen before going to bed which helps the pain a little but not the other stuff. This past month I was stressed out with the possiblity of ovarian cancer which didn't help matters, but surgery two weeks ago showed all was okay...thank God...saw the rheumy yesterday and he he wd like me to continue on 1mg for four months but I want off of it because I have glaucoma and cataracts. Soooo...hopefully in one more month that dream will come true. It is not an easy thing to do, that's for sure. I am 71 and just keep chugging along...take care everyone....and don't give up!Hello Gmama

It's realy good to hear that the ovarian cancer was a false alarm - that
must have been really stressful for you.

You are doing really well tapering off the drug - well done. But I know
what you mean - aches, pains, weariness and tired and emotional! I'm in
process of going from 3.5 to 3mg by alternating for a week, and I'll go to
3 next week, and I must admit I'm struggling. I'm not in any pain, so I'm
assuming it's withdrawal rather than PMR symptoms. Admittedly I haven't
helped myself by having a glass of whisky last night to celebrate a
friend's new job. My first since December as I've been well aware that
alcohol does me no good - and I really did pay for it today.

Margaret

Thank you for your kind thoughts, Margaret, and I am happy to hear you are doing so well on your tapering...I think...and hope...that your symptoms are due to the withdrawal....once one can get past that, there is a plateau of normalcy, whatever that is!! I be that glass of whisky tasted good. I have also noticed that I have a bit of a harder day if I have wine or a glass of OBJ (Oh Be Joyful...whiskeyGmama - so glad you do NOT have ovarialn cancer!
I have not yet started decreasing pred and i have the weariness and
teariness... makes me think it is either the PMR or the drug itself without the
tapering?
Thank you all for being here!
Feel well
pgrI appreciate your warm welcomes and encouraging words. What a relief to
know that that I'm not the only one with all these weird and unpredictable
symptoms. But I wish none of us had them.
Reni, my rheumy said it is from his experience in his practice where he very
seldom sees someone completely shake pmr and from the course it is taking
in me that he thinks it wil be permanent. I have read the same kind of info
you have; none says pmr never resolves. But I will always hold on to hope.
In the meantime we have to take it a day at a time anyway and make our joy
as best we can.

Happy autumn,
GeralynThank you, pgr! The symptoms of PMR and prednisone withdrawal are very similiar....and I remember days at the beginning of this process , way before tapering, when I wd just move from the couch to the bed and burst in to tears for no reason at all...the tears may have very well been in response to finding myself in such a debilitating condition. Continue to persevere, be patient (that's a hard one for me} and don't give up hope!Geralyn,

Interesting what your rheumy told you about PMR's course. My rheumy's nurse once told me they had a patient who had it for 10 years (I guess still has it). I do sometimes wonder if I don't still have a mild form now. I get along all right, and can do much of what I used to do, but I do have back aches and lower body (hip and butt) aches. My PCP keeps telling me it is referred pain from my disc problems, and MRI report indicated that as well, but I am still sure a lot of it is muscle related. And I do get so fatigued at times still. I am thankful that it is nowhere near what it was at the first, when I could hardly walk half a block without hurting so bad. So, even if it doesn't go away entirely, it does get better, as long as one doesn't have other things crop up in relation to the PMR, like RA.

Gmama, I used to cry a lot, too, and it was because I felt so useless. My husband worked hard enough at his job, and then had to take over so much of my household duties when my PMR was at its worst. It is so frustrating when all you can get done in a day is shower and get dressed. Some days were like that. They are much better now.

Hope everyone is having a decent week.

Reni

Hi Geralyn:

I am fairly new to this forum also, but I love it, the people are great and so helpful. I check in everyday, although I don't always have a lot to say. I just wanted to tell you that I have a friend who was diagnosed with PMR last year, but she had suffered for many, many years without knowing what it was or taking PRED. Her doctor has told her that because she has had it for so long, it is unlikely that she will ever be rid of PMR. She is currently on 20mg PRED and Morphine (I don't know the dosage, but it is daily). I only started suffering the pains last November and was diagnosed as PMR July 24th after both the doctor and I thought during that time that the pain in my arm was from a severe fall in November. When the pain moved also to my other arm the doctor then started treating me for PMR. Now I am on 25mg PRED and Percocet and trying to reduce both. But my doctor tells me that because we discovered my PMR so soon that he expects me to recover. How long have you known you have PMR? Would this make any difference to what your doctor said about probably not recovering?

Missy....do you think you have to take medication to get rid of PMR? I had to quit prednisone and methotrexate because of the effect on my eyes on prednisone and my liver count on methotrexate. Mary

Hello all and welcome geralyn, just a short hello to say I'm still here, but had no opportunity to post, as I have been caring for my mother who is sick. She just lives next door, so it has been not too bad, but I have been so busy, looking after her and her pets and preparing her food and all the other things, plus my own household as well! Today I realised it was all too much, especially as she is not getting better, took her to the hospital and they are keeping her in to observe her. Just in time for me, as I was just getting to the point of very bad fatigue. I'm still on 10mg, won't be trying to taper again till things get back to normal. I have got some 2.5mgs so that should help. I wish all us ladies with the terrible fatigue could get together for a big group hug. Gmama, thanks God you don't have the dreaded Ovarian C! Chico, I am sorry your mom isn't doing well. I can't imagine taking care of
someone else while struggling with PMR as well! Oh yeah, most of us are
trying to care for families... but i meant soneone else who is't well...

Try to be good to yourself, get what ever rest you can and check i with us
for support often!

We are thinking about you!

Welcome Geralyn!

My doc doesn't say I won't ever get rid of PMR, but does say she thinks
those of us who get it younger (50's) have it develop into other bad stuff
like RA, lupus etc. I try to put this discouraging thought out of mind for
the most part. I see her Monday and plan to start my 1st pred reduction
from 20 to 17.5 mg.

I am working about 3/4 time now, after 3 full days I am wiped out! One
son left last week and the other leaves Tuesday so i am hoping to get
more rest time then. I have started walking again... only 1 -1 1/2 miles
twice this week, and on the flat rather than my usual route (most places
here are very hilly), but i was able to do it.

Have a good weekend everyone!
pgr

Hi Mary:

Funny you should mention that today.....about the eyes, I mean. This morning I am really troubled. My eyes are very foggy. I have always had good eyesight up until the 'age' think with reading glasses. Is it the Prednizone or the PMR that affects the eyes? I must make an appointment with my doctor to get a referral to an eye doctor. I was concerned when I read about giant cell arteritis being a possibility with PMR. When I asked my doctor he said that the dosage of Pred I was on (25mg) would take care of that also, but he didn't do any test/biopsy. I do have to take the PMR medication to control the pain. Prior to taking the meds I was in constant pain day and night, so I guess I have to be on the meds, at least for now. But my goal is to get on low dosage of Pred and then right off it!

Hi, Missy -

I don't know whether you have read my previous posts about chromium picolinate and biotin helping with corticosteroid induced diabetes. I am very myopic and had been on 15 mg. of prednisone for a few weeks when my vision suddenly crashed - every day I would go from being able to see normal in the morning to not being able to drive in the afternoon. After seeing an optometrist to no avail, I did some research on the internet and was told by an eye specialist that blood sugar levels can affect the density of fluid in the eyes and cause changes in vision. When I started taking 600 mcg of chromium picolinate & 250 mcg of biotin daily, my vision problems cleared right up. Evidently insulin needs chromium to do its job of regulating blood sugar levels, and prednisone depletes the chromium in your system, so your blood sugar can become wildly irregular.

Seems it doesn't help everyone, but it sure helps me!

Hi Missy...I am sorry to hear about your foggy vision. Ruth, as always, has offered some very good advice....it would also be a good idea to have your eye pressure checked...I developed steriod induced glaucoma w/in 3 months of being on prednisone. I don't know how old you are, but prednisone also increases cataract problems. Sooo...a visit to the eye dr would be a good thing to do.

Chico, you have really had a lot on your platter lately. Taking care of your mother, even in the best of circumstances, can be very stressful. I hope she is doing better and that you can get a few days rest. Thank you for your good wishes re the dreaded O cancer...hugs to all!

Thanks for the welcomes and interesting comments,Missy , Chico and
pgr.

Chico, I hope your mother improves quickly for her sake and yours.

Missy, pgr and Reni, I appreciate your input on pmr never going away. I
was diagnosed Sept 2006 but I was feeling the symptoms for about 6
months previous since right after I had a severe bout of flu followed by a
sinus infection. I experienced about 50% improvement with my first 2
days on pred but have never been pain-free or recovered my energy. I
couldn't go up one step without help from the railing and still can't. I am
68 so I won't have the hope those of you who are younger have of a faster
pmr burn out. But still I hope and do my best to keep up with things,
only at half speed. The slug across the landscape syndrome.

Gmama, so glad that the cancer possibility is behind you. You sound very
brave.

Pgr, I admire all you're doing, going back to work and walking so far.
Hope you continue to get stronger.

Blessings to everyone,
GeralynGeralyn,

Your PMR onset sounds much like mine. I had what sure felt like flu twice in two months, and then I got the aches so bad. We had just moved, and the house we were renting was 2 story. I stayed upstairs for three days while I was sick, because my knees and hips hurt so bad to try to go up and down the stairs. I had my PMR for a little over 5 years. Am thinking it is probably gone now, though I still ache some (but that could be from my back problems, too Reni, It's so encouraging that you are doing so well and are able to walk
that far. I look forward to walking for exercise for again. I had lost a lot of
weight pre-pmr. Now it's creeping back thanks to pred, lack of exercise and
lack of self-discipline. It is hard to stick to healthy eating when you're just
trying to get through the day. I am trying an anti-inflammatory diet---lots
of fish, veggies and fruit; no sugar, gluten or highly processed carbs.
Haven't been doing it long enough to see results either in weight or comfort
level.

Have any of you used this kind of diet?

Blessings,
GeralynGeralyn,
The diet you described is pretty much the one I am on. Plus chicken, two
slices of multi grain bread, one cup of milk (in a latte) and one cup of yogurt
with cereal or fruit. No white flour and no sugar. (Which is a little hard
sometimes, a cinnamon roll with a latte is pretty good, might indulge once
a week.) I haven't gained any weight, although I have been on pred since
March. Started at 20mg, down to 10 and back up to 15 twice. Am now on
12 1/2. I'm feeling pretty good at the moment, (great fatigue, however, not
much pain). It is hard to tell if the diet is effective, but it would seem so.

It's worth a try.

Take care, LibethGeralyn,

I admire all of you who are able to stick to any kind of diet. I was fairly thin all my life, put on a few pounds after a C-section with my second child, and then menopause, but was still at a good weight until the prednisone. I was one of those who used to try to gain weight, to no avail. Now I am still struggling to take off the pred. lbs., and if I could just exercise my willpower (I won't say I have NO willpower, I just need to exercise it!), I could probably lose the weight. The no-sugar, or even a great reduction in sugar would probably help a lot. I do better in the summer when I have my garden and can go out in the yard and eat sugar peas, green beans, cherry tomatoes, cukes, etc.. I find I eat lots more veggies, and less of everything else, plus I have the exercise from doing yard and garden work. Unfortunately, we're heading into fall, and will have the rain soon, which can last until June, and then it's lots of carbs....
I need to start going back to the gym and doing some weights, too. That would help, no doubt. Don't you just hate when you've done an exercise regimem for a long time, and gotten yourself in shape, just to lose it all because of something like PMR? I used to swim laps 3 times a week (until I had shoulder surgery for a shredded rotator cuff), walked 3-4 days a week 2-4 miles, did 45 min. on the elliptical 4 days a week and 30-45 min. on the weight machines 3 times a week. Yep, having PMR (or any other chronic, painful disease for that matter) wreaks havoc with trying to keep up with any routine exercise program. I am thankful to be able to do the 3-4 mile walks now, and am literally starting over with the weights (can't lift near what I did before, and even then it wasn't that much) But, hang in there. We'll get back to it eventually.

Keep us posted on the anti-inflammatory diet. I'd be interested to know how it goes. Take care.

Reni
I have been on an anti-inflammatory diet - some pre-pmr some since.I
wrote long posts about it previously, so won't go into the whole thing, but
VERY important to it is NO Nightshades (ie tomatoes, potatoes, eggplants or
peppers of any kind). The rest is no gluten (not even whole wheats) no dairy
and ESPECIALLY no sugar. There was a thread about this a while back (a
week or 2). I am testing the gluten peice, haven't had any since July 20th)
and plan to challenge it on Oct 6th. Right now I know the sugar is what gives
me the most pain as several said on the last thread about it.

It has been incredibly hard to cut the sugar... the obviously resultant pain
and my acupuncturist have both helped me with that. Good luck to all who
are trying that!

pgr 555

I think the sugar really really makes a difference with me. I didn't have any yesterday...so to speak, and I feel a lot better today. Like you, I should just knuckle down and not eat any nightshades or dark bread too. I've been eating yogert though too and using nonfat milk on my oatmeal.

There sure isn't much to eat if one doesn't eat any of those. It is strange that doctors don't tell you that the adrenal gland plays a large part in the process of sugar in your body.

I posted the message a couple weeks ago with the web site that talked about it and have been trying to cut down on carbs and sugar. It is harder for me to cut the carbs rather than sugar. Mary

I didn't realize that about the adrenal gland and sugar! Guess I missed the
thread you mentioned.
It is interesting because people ask me what I do eat, but most people
eat the same 20 foods all the time (I read that somewhere), I m finding I
eat more different things than I use to... more grains that are non-gluten,
more beans nuts, seafood and veggies and fruit. It is hard to eat out and
to eat with my hubby! he is a carb/red meat guy!
I am allergic or at least sensitive to nightshades, so that part is a
necessity for me.I get swollen, sometimes hives and have even had an
itchy throat that it took 2 doses of benedryl to relieve - esp from the
peppers so there is good incentive on that front. And dairy is even
worse...

I never had any allergies till I was in my 30's. Was that the beginning of
auto-immune stuff??? Do allergies qualify as that? Hmmm another
connection question
pgrStarbright, pgr and Reni, there's so much good information here! I went
back to some of the posts on diet. I wil test whether I react to nightshades,
but how will I cook without tomatoes and peppers? But I'm waiting until
after I get back from vacation the first week in oct. I will not be strong
enough to stick to such a strict diet on vacation, I know.
My dr has never mentioned diet, has yours?

Keep smiling,
GeralynMy GYN & my acupunctiurist are the ones who are diet focused and got
me
started long ago.
There is a cookbook on-line that gives night shade substitutes... I will
look
and see if i can find the link. I made apasta sauce from it that my very
fussy
son ate and said was really similar to marinara. Mostly I have learned to
eat
without those.

I would never try to change my diet on vacation either... that is the time
to
cheat if you are already doing this stuff

Just for info, the allergy book "Is this my child" and my gyn say it is at
least 6 weeks wihout a food in your diet before you test it by eating LOTS
in one day and seeing what happens. I test gluten Oct 6th... going to a
wedding that day and planning on eating what I want.
Let me know about the nightshades Geralyn.
pgr

Neither my doctor or rheumatologist mentioned anything about diet. My chiropractor that I went to before going to the doctors gave me a booklet he had made about and inflammatory diet. I didn't read it too well, but I saved it.

When I found that site that talked about the sugar and carbs and how they adrenal gland processed them, I got it out to read again.

I am still eating carbs, but trying not too. I guess I lived on carbs, maybe that is why everything went haywire.

The article said to eat more meat; and, I must confess, I am not a meat eater at all, so will try to get more meat into my diet. I eat meat as part of a dish like casserole, but very seldom eat a piece of meat like steak or roast.

I feel pretty good today. Last night I crocheted for a couple hours, and now my left arm hurts more today. I suppose I held it in the same position for too long a time. I'm going to try to crochet again tonight, buy not press down so hard on the chair arm with my left arm. I've never been bothered before when I have crocheted. That is really going to be a bummer if I have to limit that pass-time. Mary

I went to the rheumy today... she is very good & I really like her!!!

She got back all my results from complete auto-immune panel and with a
sed rate that has dropped from 57 down to 2 and a CRP that is as low as
they go, she really does believe I have PMR now.

She said, based a lot on what I have told her of reports from :"younger"
people I gave her from here, that she thinks the exhaustion and stuff we
talk about, lags behind the sed rate and tests.

As a result, we and I do mean WE, it was a joint decision based on what
y'all have said and her expertise, are leaving me on 20 mg to the
beginning of Oct then going to alternating 20/17.5. i mentioned that I am
traveling Oct 5-7 & she said wait till after that! wow, maybe she gets it!

BTW Mary, I am really surprised about the meat... every anti-inflam die I
have seen says AVOID red meat. I googled anti-inflam diets and read
many different sites all basically the same, but don't have links anymore.
take care all,
pgrGood news from your blood tests Phyl, and good that your rheumy is getting the picture! This thread continues to be very interesting. I have caught up with the posts and still learning a lot. Hello to all, there are getting to be so many of us now, too many to mention by name, so hope you ALL are doing OK today. pgr, It's so good you found a dr you can feel good about and also about
your test results. What is included in a complete auto-immune panel?
I've had lots of tests but none termed like that. Makes sense.

All your comments about diet encourage me. All of the research I've done
discourages red meat. It produces something in the body called
arachidonic
acid which is a precurser to inflammation. Poultry is ok but fatty fish are
great anti-inflammatories (wild, not farmed fish). There are several
books available if you search amazon/inflammation. But they don't
always agree (like the med. authorities) so it's hard to know what to trust.
I love to cook and eat and don't want to subject myself to another hard
regime if it won't help. So your input is invaluable. Thanks.

Keep smiling
Geralyn

HI pgr: What great news, it is good to have a good day like that what some of the days aren't so good. You all seem so knowledagable about your tests. I guess I have to do some more research. I know that my SED rate is normal, that was the only one I found to ask about. Is there a site that explains these tests?

I am going to see my dr tomorrow, my eyes have been getting very foggy and that makes me a bit concerned. I can't seem to get down from 25mg of Pred, though, any lower I get a fair amount of pain, expecially at night. So I will see what he has to say about that.

I will check in tomorrow night again.

Hi All:

I did see my dr and no change, except in my weight. I now have gained 18 lbs since July 24th when I started on Pred. The dr and of course, I do to, want to reduce the dosage down from 25-28mg daily. I am really going to try to reduce by 1-2mg every week. Right now my big concern is my eyes, they are really foggy. I go to the eye dr tomorrow to be checked out. So I will see what other results I have from PMR and Pred! I sure would not like to go back to the pain I had before Pred, but I so want to be off it, or at least on a low, low dosage.

Talk to everyone soon.

Fingers crossed for tomorrow missy, hopefully the eye thing is a temporary one due to the pred. Good to be seeing the eye doc and hope he will reassure you.

Great news PGR....

Isn't it wonderful to have a doctor that listens and gets it? Keep us updated on your tapering. We need all the info we can get.

Missy....My eyes have been pretty foggy for awhile now. Sort of felt swollen like I just woke up all day long. I went to an Opthamologist and my pressure was high so she put me on daily eyedrops for occular hypertension. I don't know if you wear glasses but I think the pressure affected my eyes and a new prescription and everything is as clear as a bell. I hope your eyes are OK, nothing serious, please let us all know.

Take care all....Kathy

Pgr555

There are so many things written it is difficult to know just what will really help you. I posted the link that was sort of a eye-opener to me. I had read about anti-inflammatory diets before, but really didn't understand I guess.

Way done into the article they talk about that if Prednisone helps your body, it means the adrenal glands are not working correctly and doctors don't tell you anything about that.

I have modified my diet. I have not eaten any overly processed food. I have eaten meat and potatoes, vegetables(canned) cottage cheese, oatmeal. I have not eaten any bread, cookies, etc.

I have been on that pain killer...but that is not supposed to kick in until I reach higher mgs. I didn't take it yesterday and I think I will not take it to see what happens.

I am feeling better and I can lift my knees up. My arms feel better, but my lower back gets so stiff, that when I get up, I have to ease into standing up straight. Once I get up, I am fine.

Really strange experience tonight. I went out for supper and wore high heels. That was a strange experience. I haven't worn heals since this whole thing started. I wasn't easy and I don't think I will do it again for awhile....not until this goes away...if it does.

This article below has helped me. Sugar definitely affects me, I found that out at the Fair when I ate a funnel cake and after two hours my knees hurt like crazy and more so than they ever had before. So it was either the sugar or the fat. I found this article after the Fair and it was like a light bulb lighting up. I had not connected sugar with my pain before. The less sugar I eat, the better I feel. And, I know I ate a lot before. I am thinking maybe I should try some adrenal support supplements. But maybe just working more on my diet at this point in the PMR saga will be just as helpful. Mary

for whatever it is worth, I'm posting the link again just for information to those to show what I am talking about

http://www.westonaprice.org/askdoctor/steroids.html

Mary,

What an interesting article. I had asked the dr. once about whether, since pred. helped, if it meant the adrenal gland wasn't working properly, and got a negative response. It just seems like common sense to think it would NOT be working right, if the prednisone helps. Does the medical field really not know these things, or are they just buying into the pharmaceutical push to sell drugs. I didn't realize the reasons that it is so hard to wean oneself off pred. Wow! I'm glad I'm off it; guess I'm just stubborn and kept reducing my dose by 1 mg. a week until I was done. And maybe I should look into a diet to help build up the adrenal gland's function. Anyway, thanks for sharing.

Reni
I guess I am lucky in the docs I have! My GYN told me when I started on
pred about the adrenal piece. She recommended Omegas to help rebuild
it. I have been also taking B12, but the article says B6 is more important.
May add that. My rheumy also talked about the role of adrenals in sugar.

The article had 1 other point that I think is important for me... that a low
fat cholesteral diet is bad for the adrenals - so the anti imflam diet I have
been on is pretty low fat/cholesteral...

While we are taking about articles posted, my office full of over 50 on
calcium women (all health care providers) read and discussed Chico's
article about calcum and heart atack yesterday. Thanks Chico!

And Thank you all for all the informative stuff yo post!
pgr[QUOTE=missy1639]

Hi All my PMR Friends:

[/QUOTE]

Hello Missy. I started with PMR on the 7th January 07 (as sudden as that) no sign on the 6th! I had never heard of PMR and just waited 2 weeks for it to go away, but then the pain was so bad it was impossible to turn over in bed so I went to the doctor. On describing my symptons he immediately said Polymyalgia. I asked him to write it down as I had never heard of it. I had a blood test and the ESR reading was 96. I was put on 20 mg of Pred for 2 weeks. The pain just went, then 15mg for 2weeks. After that 12.5 for a month, the same with 10mg, then 7.5. I am now on 2mg eight months later. Up to now I have had no PMR pain but I musn't feel smug I know it comes back. I take supplements (quite a lot), but the doc. says I am wasting my money as they are useless. I am not saying they have "cured" me. I have no idea, but I like to think they have helped. Who knows? After reading all your experiences I feel I have been incredibly fortunate (up to now) If you have never experienced PMR you just couldn't describe the pain. Quite unique to any other I think.

I wish you all well. Lydia

Missy and Lydia,

I, like Lydia, had sudden onset. Oct 27,2006 I was fine. October 28th had a sore shoulder. Next day, could not move. 18 days of torture later, I was finally diagonsed. 20 mg for 2 month-and reducing to this date. Almost my one year anniversary and I am at 4mg. My sed rate and all other blood work is normal. Dr. believes it is out of my system-and I just have to fight to get off of the Pred. I have had two flare-ups caused by trying to reduce to fast. As every one says--go slow-or you will pay.

Hi Missy

I stated with 40mg in mid december 06. Dropped to 20 mg after a few days,
and all the pain came back. Went back to 40mg, and then came down much
more slowly (5mg drops at first, the 2.5drops, and below 10mg 0nly 1mg
drops). As of this weekend I'm on 3.00mg, having been alternating days of
3.00 and 3.5mg. Below 5.00mg I've dropped by 0.5mg, and only about
every 4 weeks. I choose the date to drop by the state of my diary - I look for
a few quiet days that are likely to be stress free.

Good luck - And take it slowly.

Thank, Julia, Lonna and Margaret and all the others before.

Someone in this forum mentioned coming down by 10% (I think it may have been Bob). Last week I was at 25mg, right now I am doing it 1mg each week, so this week 24mg, but I think I will try the 10% next week. My eye dr said my eyes were the same as my test last year, so that seems OK. I just use Natural Tears as drops, it seems to help. But, the weight is piling on.........I will soon be as wide as I am tall :) lol.

I take my Pred in the morning and by night my arms are in pain, not intolerable, but aching. I did try splitting/2 in the morning and 1/2 at night, but I got some pain before my night dose. I guess everything is trial and error, that is why this group of my PMR friends is so good. I find out the different things to try.

My love and prayers to all of you I've just posted this in another thread, but it's relevant here as well. It's
from the Ask the expert section of the Arthritis association of canada
wesite about splitting doses

I have been taking prednisone for 23 years. I'm on a low dose of 4mg/
daily. I have been doing 2mg in the a.m. and 2mg in p.m. Is this okay or
is it best to take it in one dose?

In my experience, the more you divide up the same daily dose of
prednisone, the more effective it is but the more adverse effects it has.
For example, if 30 mg/day of prednisone were taken 10 mg three times
daily, it would be more effective than taking 30 mg once daily, but it
would have more adverse effects than 30 mg once daily. When the doses
of prednisone are as low as yours, 4mg/day, the adverse effects are so
minimal that taking 2mg twice daily versus 4mg once daily would make
little difference. However, the condition you are being treated for might
flare-up by changing to 4mg once daily. And after doing so well for so
long on such a low dose, it probably is not worth taking the chance.

If there were a need to reduce this dosage, I would do it very gradually. I
would reduce the evening dose to 1mg once weekly for 6 to 8 weeks,
keeping the dose at 2mg for the other 6 evenings of the week; then,
using the same timing, to 1mg on 2 alternate evenings per week and 2
mg on the other 5 evenings per week. If the process went well, then the
dosage could be reduced to 1mg every evening and 2 mg every morning.
It would take about one year to accomplish this! Although it is only a 1
mg/day dose reduction in absolute terms, it actually represents a 25%
reduction in the total daily amount of prednisone taken.

MargaretMissy,
At my doc's suggestion I take 15 mg in the morning and 5 at night. It gets
me thfough bot