had pmr 1 year have a question | Arthritis Information

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Hi all!
I have had Pmr for a year now...and began at 15mgs and am down to 5.
I lost my mother a few months ago..and as I have been going thru the estate and all..I have found myself in more pain...and have had to bump it up on occassion.
Question..
Where are most of you at- at a year?
Have any of you had a loss during your time with Pmr?
and how have you coped with more pain?

thanks...just wanted to get some kind of insight on this..
i know this is stress related but somedays it feels like a relapse.
Thanks!
cathi

hi, this disease is very mysterious. i was diagnosed july 2008. started at 40 mgm. i am now down to 3.5.  i would like to up it due to pain, but i stubbornly want off the pred.  when it is more than i can take in the morn. i take a naproxen, which seems to help the warming out process. it has been so cold and miserable here, i haven't been able to take too many walks, but i believe my walks help warm it out and i always feel better after, although starting out is painful.  some weeks, i think it has lessened 50%, and i try to think what i have done right, but sure enough it comes back to its previous level. i do not know what causes that, stress or is it weather related. i do not have an answer for that.  illinois is my home state, doubt i will see it again, but i miss the cornfields. Hi Cathi,
I also started at 15 -- worked wonders in 3 days. Now I'm at .5 every other day (sopping next week!). Like Cowgirl I desperately want off the stuff but the symptoms are still there. I'm going to attempt toughing it out for a while to see what happens.

CathiB - I was diagnosed about the same time as you (Feb. 08).  I am currently at 5 mg but don't think I can stay there.  I couldn't before (tried the end of summer).  Went back up to 7 mg.  I'm ok at 6mg but 5 mg just doesn't seem to work out  yet.  Think I will have to go up again - more swelling in my hands and wrists and pain/inflammation in my joints.  Stiffness, too.  I know some people that are higher than that at a year and some people have taken a year at 5mg.  Hope this helps.
 
Kim

Being an ex PMR person I hope I can help a bit.  I was in a big rush to get off pred because I had all the side effects....weight gain, moon face, thinning skin, facial hair and, of course the jelly belly. I used to joke that the only thing I didn't get was the camels hump and that was because it slipped and ended up on the behind.  Conjures up a great picture.  There is posted in here, somewhere, a method of reducing pred by RDSwede and I followed it until the pmr left my body last June.  We had another lady who would alway remind us that it is the quality of life we are looking for so don't be in a big hurry to dump the pred.  If you follow Ragnars method I think you will have a bit less trouble tapering.  I also found that once I accepted what I had and stopped fighting it so hard I was at peace with it all and the next thing it was gone.

If there are any questions I can help you with just give me a holler if not there are a lot of ladies that have great information.
 
I forgot to look but are any of you on fish oil?  That is one thing that seems to help a lot. 
 
 
 
Take good care.
 
ps. Seeing Mrs. UK signed on reminded me...did any of you fill the survey out that is posted on page 2 half way down the page.  I think it is really important and will hopefully find some answers to this mysterious disease.  Thanks.  
TeedOff2009-03-14 21:48:18THANK YOU!! a big big thank you!
you are right..it is the jelly belly..(oh and the fact that my hair is simply totally different now!) and that i am now bigger than my husband..(something i cringe saying!)
but i do want to get off for good..i will look for ragners post...
and YES did fill out the questionaire!

also thanks so much for letting me know that 5mg is just fine..sometimes i think i should be so much further along...but i do not want to relapse..oh no!

Hi Cathi

I am trying so hard to get the weight thing back under control.  I lost 20 lbs. fairly quickly but the stomach is still a mess.  I am just getting the fibro under control so hopefully can start walking.  Golf season is around the corner so have to get into shape (other than pear).  I passed my husband weight wise about 7 years ago when I quit smoking.  For the hair I took folic acid but I started it a bit late....it did stop the hair from falling out more and my hairdresser says it is looking a lot more healthy.  If you are having trouble with the thin skin biotin works great.  Ruth also swore by chromium picolate (sp).  It is used for the blood...my brain fog won't let me give you the proper information on that but I could find it.  The post by RDSwede is on page 6 and I think it is the 7th post.
 
Old PMR will let you know when it is time to drop the pred.  I met a lady who has had pmr for 20 years and just stays on the 5 mg.  I bowled with her for about 5 years and never new there was anything wrong with her.  Once you get to 5 mg and under a lot of those side effects start to disappear.  When I was in pain I could care less if I grew a beard or had a camels hump as long as the pain would go away.
 
You will be fine Cathi but if you are have a rough day just come on.  Remember, everyone is in the same boat.  Bob W. used to have a boat going in here.  Maybe he will have to come back and pick up a new crew.  It was a really cute thing they had going.  Used to love reading the kibitzing.
 
Take good care Cathi.
 
Pat
  Hugs to all of you for the info you've been posting. I have had PMR since March of last year and believe me, it ain't no picnic. Apparently a lot of you do like I do; get fed up and try to taper off or just stop cold turkey with the pred. And find out it isn't too wise a move. I've tried getting off it a couple of times but, have to go back. My most recent "c.t" was about 4 weeks ago and I totally stopped all my pain meds and pred. Dumb move. At the end of three weeks I ended up back at the doc's office. He finally got through to me that all this pain has a name and is something that won't stop anytime soon. I'm sure he must have told me what it was called before but, all the meds seem to cause confusion, at times. So, I finally looked up the name on line and read about it. Now it's sinking in and I guess I'm accepting the fact that it's not like a sprain and heals in a few weeks. Bummer!! So, I have a question about the pred. Does it also cause you to just sit and kinda day dream for a while before you actually get up and do whatever you'd thought to do? I seem to do that a lot and it's very aggravating. I have noticed that at times as previously mentioned by a few of you that there are times when 5mg isn't enough and have to take 10 mg but, I guess this is normal symptomwise for PMR, right? I also read that it can go away after about 2 years and am hoping it's true. Anybody? There has to be a light at the end of the tunnel, please!I've had PMR for over 3 years and I don't think about it much anymore.  Am still on prednisone (3.0 mg/day) but have never experienced much in the way of side effects, especially below 5.0 mg.  I get a little stiff and fatigued now and then - one thing that is bothering me at present is swelling and some pain in my 2 little fingers and r. index finger - not sure if it's PMR related or not, just hoping it's not permanent, as I've just decided to go back to playing fiddle & guitar (for fun).  Tempted to boost my prednisone back up, but haven't quite decided to do so.
 
Main reason I'm posting is to warn folks not to stop their prednisone "cold turkey" unless they've only been on it a short while i.e. a few weeks or months.  If you stop suddenly after several months, it can actually lead to a severe adrenal insufficiency that can be fatal because your adrenal glands have stopped producing cortisol.  Yes - people have died!  Definitely taper off prednisone, and talk to your doctor about a safe schedule before doing so!
 
About sitting and daydreaming ... I have always had days when I do that anyway!
 
Best wishes to you all!
Dear Cathi,
 
I have had PMR since 2002.  To reduce the effects, I started with a 160mg injection followd by several weeks on 30mg Prednisolone.  I have been working down over the years and I am now on 7mg, although this needs a booster injection every 4-6 months.
 
The pains, stiffness, etc come back at below 7mg per day.  Although I agree that walking and arm work does warm up the muscles, the stiffness lessens but does not go away.
 
I think I am now termed chronic and I am looking for triggers, which bring about the flares that I have every now and then.  These flares need higher doses of prednisolone (eg 10-30mg) depending on the severity and then usually a DEPO injection.
 
If you or anyone else have any ideas as to what could trigger the PMR I would really like to hear it.
 
Kindest regards
 
John
John Day

Noticed you are from the UK.

The UK has a new charity called PMR-GCA UK.

We currently have two websites with loads of info and support groups and a group of men who email each other - all located in the UK.

 http://www.pmr-gca-northeast.org.uk

http://www.pmr-gca.org.uk

Have a look see and there are links to two International Surveys.

We are looking for cause and cure.


mrs UK


This is the first time for me to post on this forum...I usually just read what everyone has to say and know how you feel.
 
I know this post is old but I just read it again and got a tickle out of the jelly belly statement.. Now I have a name for mine...besides my "round as a biscuit" face as my mom calls it..I now have a jelly belly.. It is catching up with my husbands..plus I now outweigh him also..
I started this wonderful journey back in August of 2008 and finally was diagnosed in October of 2008.  Started on Prednisone 20mg and felt wonderful almost immediately...I got down to 10 then 7.5 but at 7.5 I still felt bad but continued on as I did not want to increase it even though my rheumatologist told me to listen to my body and taught me how to go up and down as needed.. I just stuck it out.  Well then I went back in April and she told me to go down to 5mg.. I got to stay on 5mg only for 3 days until the lab work came back and she called and said to up it back to 10mg.  I knew I had not been feeling good but I was determined to stick it out...I go back on Friday 6/19/09 and I hope I get to start decreasing it again but I don't know.. For some reason I woke up today just not feeling well..First time in a couple of months that I have missed church b/c of this illness.. I am just aching all over in my hips, shoulders, etc.. and I am tired.. but I just had to chuckle at the "jelly belly" comment. That made my day.. Thanks! 
 
I also feel like a walking pharmacy with all of the medicines that I am on.. I cannot wait for the day to feel normal again....
Hi Debbie, welcome from one of the olde girls on here .. In my 4th year and still learning how to cope with this miserable PMR... Your sense of humour is so refreshing! I have been feeling pretty grumpy lately , again.
  I am at 4mg and need to go back up again!! Another double double chin ( Moon Face) Fat Hump ( Elephant or Camel) and walking like a Duck!!! No more barn yard jokes..
Most of us on here have this Love - Hate relationship with Pred. Feel good at higher doses but the side effects and I don't just mean physical ones are wreaking havoc on our bodies as well!
 At the start.. just get rid of this pain, then just get me off this, BUT unfortunately we do have a debilating painful disease that has to some how burn itself out! Thank goodness for this forum ... it has certainly taught me this over the years... to try and learn to go with the flow and one day it will get better xx
Listen to your body like you did today, when you are tired...rest.  Fatigue is a huge problem with PMR along with your other "Just aching all over ect."... that's PMR!
Lets know how you get on at the Rheumy on Friday. She sound good, good advice she has given you! Sorry Debbie but you are still at the start of this journey, unless you are extremely fortunate. Hugs Lyn
I sure will let you all know how my appointment went with the rheumatologist on Friday...She will probably try to reduce me and then call me with blood work results on Monday and we will go from there depending on those results..
 
I sure like this board.. It is so hard to try to explain what in the world is going on with my body to other people who do not have this.. One day you can feel pretty good and the next day you don't.... Seems like just getting up to shower, put makeup on, make up the bed, do laundry and dishes and I am pooped out.   Thankfully I work at home on the computer but I would so like to get back into getting out of this house working at least 3 days a week since I am a nurse and I truly miss that... I don't think my hips would hold up to all that walking though...
 
By the way I am 52 so I am fairly young for this disease.. The thing that I am looking forward to is the fact that this will go away some day...I don't think I have any questions for anyone so I will go for now...
 
Thanks so much to everyone for posting...
 
 
thanks for all your replies everyone...

i definately get daydreamy on the pred..or is it the pmr..or is it just life???
who knows anymore..but yep..nothing is as easy these days......
but

we are alive...
smile

will be three years for me this Sept.   I started on 60m mg of pred.  and have been down as far as 11, only to go back up again.  My problem was, I didn't have a dr at the beginning who believed in me and how much pain I was in.  I honestly think if it were caught earlier, I wouldn't be having this much trouble.  I've gained 50 pounds, got the moon face so bad, that the capillaries in my face ruptured and now I have red blotches all over my face.  I want off this prednisone, and when I asked about it,  my new dr said, I have a choice of going off of it and going totally blind, (Already partially blind in left eye due to late dx that lead to GCA)   OR going back up to 60 and dealing with other side effects.  I guess it is the lesser of 2 evils.  Hang in there.

bevI'm new here and I am not sure whether I have RA or PMR.  The Dr. isn't sure at this point and I am very frustrated.  I have most of my symptoms in my hands, wrists, elbows, ankles and feet so I have no idea where PMR came from.  How did your Dr.'s decide that it was in fact PMR?  Also, I was started at 10mg pred. and I am now at 9 and having night sweats, chills and much more pain.  I don't know where to start to find answers.  Thanks for any help you can give!Hi
 
PMR is more in the shoulders and the girdle as they call it.  It is suppose to be inflamation in the blood so the whole body feels like you have been hit by a Mac truck.  The way they dx is by process of elimination and the SED rate.  The pred is probably what is causing the night sweats and chills.  If you google pmr you can get a better idea of what is going on.
 
I have fibro now dxd 3 weeks after the pmr left and currently have pain in left elbow, all fingers, right wrist and in my feet.  My dx has not changed yet.
 
I wish you good luck in finding your answers and if you need any other information or just need to vent this site is excellent.
 
Pat
 
Thanks so much, Pat.  My Dr. isn't good about explaining much of anything so I am trying to find out as much as I can online.  Dr. did say she isn't sure that I have fibro now due to good response to the pred.  I think that I might need to see a new Rheumatologist who I feel like can answer my questions.  I have no idea how any of my labs came out.  She states that they are all "fine".  Hello?  I appreciate your quick response and I will continue to come to this forum!
Sharlane
Sharlane
 
I see Mrs UK is on right now and she is great at answering any questions.  She also has another site in the UK that you can go to.
 
Pat
Sharlane

visit  www.pmr-gca-northeast.org.uk website.

On this site you will find a 28 page document by Professor Bhaskhar Dasgupta called the Burden of PMR.   Download and read it.

Let us know it you find it useful please.    We also have diagnostic procedures which are currently being used in the UK,  and have been published on the Royal College of Physicians Website, but are waiting clearance by NICE.  

In the UK, it is recommended that when first diagnosed you also see a Consultant Rheumatologist  - but that does not always happen and we advise people who contact us to visit one for confirmation.

Sorry that I am asking you to visit sites and read - but coping with a kidney infection at present.

Thanks so much for the information.  I will do that right now!  I also called my rheumatologist (2nd time this week....ugh)and she is working me in on Thursday next week to answer my questions. I was sort of thrown off at the last visit 2 1/2 weeks ago by the possibility of RA and PMR (which I had never heard of) so I didn't have any intelligent questions to ask! I hope you feel better soon!
Sharlane
[QUOTE=mrs UK]Sharlane

visit  www.pmr-gca-northeast.org.uk website.

On this site you will find a 28 page document by Professor Bhaskhar Dasgupta called the Burden of PMR.   Download and read it.

Let us know it you find it useful please.    We also have diagnostic procedures which are currently being used in the UK,  and have been published on the Royal College of Physicians Website, but are waiting clearance by NICE.  

In the UK, it is recommended that when first diagnosed you also see a Consultant Rheumatologist  - but that does not always happen and we advise people who contact us to visit one for confirmation.

Sorry that I am asking you to visit sites and read - but coping with a kidney infection at present.

[/QUOTE]
 
Sorry you are not feeling well Mrs UK.  Please take good care of yourself.
 
Pat
Sharlane,
 
Go find you a new rheumatologist.. Yours needs to be giving you copies of your lab results and going over everything there is to know about PMR.  My rheumatologist will stay in the room for me at least an hour if need be.. She checks me from head to toe at every visit...In fact I went on Friday... I am now trying to decrease back down to 7.5mg pending my lab results, which she will call me and email me the results when they are available.  I see that you are in Texas.. If you are close to Dallas email me and I will give you the name of mine..
 
I found the Mayo Clinic website to be useful to me in providing information on PMR.
I maybe wrong but I think I got my PMR from coming down with Fifth disease sometime during the summer that I did not know about.. The only reason I knew about this was that my PCP was stumped as to what was going on with me and ordered a Human parvovirus B-19 lab, which came back positive.. I had no antibodies built up yet indicating a recent infection.  Remember they think PMR is genetic or enviromental related...(stress, infection, etc.)
 
As previously stated diagnosing PMR is by process of elimination...My PCP thought I had RA but all of my tests came back normal except for my ESR and CRP...but she gave me a 9 day trial of Prednisone and I was begging for more... She wanted me to be hurting when I got in to see the rheumatologist, which took at least 6 weeks.  That was the longest six weeks in my life... My pain started with not being able to lift my legs to get in and out of the car and trying to drive was a pain.. I also could not get up and down off of the toilet or up and down out of a chair.. I had shoulder surgery and thought that I had re-injured my shoulder again.. I did not know what kind of doctor to go to, to get this all figured out.. then one day you feel pretty good and think you are making this all up. It is sooo hard to explain and only someone who is going through this can understand it at all...
 
On a good note though, I asked yesterday what my starting weight was when I first saw my rheumatologist on Oct.31, 2008 and as of Friday at my appointment I had only gained 17 pounds, which I thought had been around 20 pounds.. I did gain 4 pounds though at this visit when she upped the Prednisone to 10mg from the 7.5.  Maybe some of it will start coming off.
 
Hang in there and hopefully you will get a diagnosis sonner rather than later.
Sorry greeneyedmonster that you have something going on.  I don't know if what I have to say will help, but it is what I have gone through and relates, I think, to what you are going through.  In January 08, I started having what felt like fluid behind by knees (I had a hard time squating) and my knuckles were a bit swollen.  Then my feet started swelling and I had a 24 hour rash on the back of my lower legs and across the top of my feet.  My ankles were swollen and I was retaining 10 pounds of fluid.  Diurectics didn't touch the fluid retention.  Then in Feb. 08 I went to see a rheumatologist and he put me on 20 mg of prednisone.  Within 24 hours I was doing much better.  After a week on the prednisone all the extra fluid was gone.  I still had and still do have swollen knuckles and wrists.  He diagnosed me with PMR (I was 43 years old at the time).  I always questioned the diagnoses because like you I just felt that my issues were with all my joints not so much muscle related.  Anyway,  over time i have reduced the prednisone and am currently at 5 mg.  I have been at this amount for many months.  Then about 8 months into this he decided I have RA with the PMR.  I now take Plaquenil and Methotrexate.  So far, I haven't had any improvement.  But I am still increasing the methotrexate.   I am seronegative RA.  My ESR and C-Reactive protein have been elevated along with my aldolase (muscle).  Oh, the prednisone and PMR can both make you sweat alot.  I think its hard to distinguish between the drug side effects and the disease.  I does get better over time, but you definitely have to be patient - which can be very hard at times.  I wish you the best and hope your questions get answered soon.
 
Kim/mom2
Hello, everyone!

I found this forum last week and am working my way through the previous posts.  I learn something new and reassuring every time - thank you!

The interesting thing I found out here just now is that symptoms and the severity of the illness go up and down. 

Basically, although I have to rely on the docs to prescribe pred, I have been self-dosing up and down for ages with no real support from anyone and some suspicion from my doctors, who gave me the impression that this thing should be nice and regular and linear in progression.   It's good to find out that it isn't my imagination and I'm not the only one who thinks it isn't as regular as they said it would be!  Below 10mg pred my pains - and particularly the headaches - usually come back, though my new rheumatologist told me to reduce pred to 7.5mg. I was also put on Methotrexate 15mg orally but it disagreed with me (and I felt no better) so I had to stop.

The problem is that my rheumatologist has poo poohed my fears of blindness etc through GCA by telling me how rare this is.  However, my family and I have a good share of rare illnesses - I started with PMR symptoms at 46, though the average age is said to be 70 - another fairy story??

What do people here do about GCA?  If I get a headache (and they're really bad) what should I do?  At the moment I normally up my pred by 2.5mg the next day, but is this enough? 

Thanks and best regards,
C.





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