What Pred dose did you start on? | Arthritis Information

 

And is the dose (or should it be)  related to the severity of symptoms? My symptoms of upper body and hip stiffness and upper arm pain, fatigue etc are tiring and annoying, but not crippling. Doc started me on 20mg Pred last week, and I had almost instant total relief of stiffness and pain, but I only managed to take it for 3 days, I had no appetite and felt awful. pain and stiffness returned slowly over the next 3 days. He initially wanted me to take 20 a day for 3 weeks. Now he says for me to start at 10mg per day for 3 weeks to start. How does this sound to you folks? Anyone else start on 10mg? Is this a low dose? By the way, my bloods and SED rate have been normal all along. Doc has always suspected PMR, and says the 3 days of 20mg Pred providing dramatic relief is significant. My rheumy appointment has not come up yet. I'm planning on starting my 10mg tomorrow morning. Thanks for any comments. Hi Chico

I started on 40mg, which I think is quite high compared with most
people. Got immediate relief, dropped to 20mg after 4 days, and all the
symptoms came back. So back up to 40mg, and then a much slower
tapering (35 to 30 to 25 to 20, and then down in 2.5 until I got to 12.5,
then down in 1's. By this stage I was only going down once a month.
From 6mg I've been going down in 0.5 drops about once a month - but I
do choose my own time so that I'm not doing anything too hectic in the
week after a drop. I felt dreadful in the mornings when I was on high
doses(over 15mg). I started the predisolone in December and am now
down to 4.0mg. I'll go to 3.5 after I've been on holiday .

Like you I had no no appetite and wanted to sleep all the time. i think
from what most people say this is an unusual reaction to predisolone, as
a lot of people can't sleep, and have an increased appetite.   (I haven't had
the weight gain either, in fact I've lost it - so matbe you'll be lucky as
well) I read something in the newspaper yesterday which said high doses
of pred send everyone manic - it certainly didn't have that effect on me!!

Hope you stay pain free.

Margaret

Chico,

I started on 10 mg prednisone and did quite well until I got to about 7 or 8; then the pain returned. I have been off prednisone almost 2 years now. I think the ususal starting dise is between 10 and 20 mg. The higher doses are usually for those with susupected temporal atertitis? I know for diagnosed TA, the doses are quite high. Gee, I wish I could have been one of the "lucky" ones to have no appetite while on prednisone. I gained 36 pounds in less than a year. Hi Chico...I started on 30mg for one week when my sed rate was over 70 last Oct...gradually decreased to 10mg by January, then down 1mg each month or so like Margaret...sed rate at   5.  I also lost weight initially and am just now getting back to where I was.  Am presently at 4mg and take ibuprofen in the evening to help...also in the morning if it is going to be a strenous day...and the journey continues..good luck to you!Thanks everyone. It was wonderful to get up this morning and see that there are people out there who understand and care about all my worries over this illness. My doc is great, when I can get to see him, but very unavailable with 3 week waits for an appointment at the moment. And I have so many questions!  It's really interesting how this drug affects people differently. My husband has bad psoriasis (all over) and every now and then the doc wants him to take Pred to give the disease a knock-back. He does a week on 40 a day then slowly reduces over about 6 weeks. It has never put weight on him or caused any change to his appearance. It does put him off food, makes him tired in the day but twitchy at night and towards the end of the course makes him quite bad tempered and miserable. And not long after the psoriasis comes back anyhow! I really hope my face doesn't get big, I hate the thought of that!

I was diagnosed with PMR a few months before I turned 56.  Started on 10 mg approx, settled at 15 mg. for a few weeks, then gradually reduced to as low as 4 mg. over the next year, but due to new symptoms this winter, I am now back at 10 mg.  I have not put on any weight, nor do I get any of the other bad side effects of prednisone, and am leading a very normal active life at 10 mg, though I hope to start reducing again after next week (I have a big horse show coming up and don't want to risk being too stiff to ride if I reduce my dosage).

One thing I do have to do with prednisone (besides taking extra calcium supplements) is to take 500 mcg. of chromium piccolinate and 250 mcg. of biotin daily at the 10 mg. dose, otherwise I have fluctuation of my blood sugar levels that affects my vision.  I don't know whether my other supplements are a big help, but I do take Omega 3-6-9, a multivitamin, garlic, and a product called Recovery powder (www.recoverymedicine.com).  I forgot to take the Recovery with me on a horse camping trip last month, and was kind of stiff when I got home, don't know whether that was from the stress of the trip or it was missing the Recovery, but I went back on it, in case.

I was diagnosed this morning and hav what i consider to be severe
symptoms that have been going on for a year... 10mg starting for 3 weeksHi pgr, I'm on 10mg for 3 weeks too, just finished my 1st week. Bearable side effects, and all pain and stiffness gone. Have you just started your pred today? Any relief yet? I had relief within 6 hours, the stiffness was the first to go, then the pain. Thak you Chico!! I thought I was crazy because I took my 1st dose at 1 pm
yesterday and drove 1 hour and sat in a movie for 2.5 hours then got up and
walked out of the theater normally! I know youunderstand how amazing that
is... the I slept through the night!!! I am eating breakfast so I can take my
2nd dose now. Still some pain, but nothing like before the 1st dose. How is
that possible???Just took my 10th dose of 10 mg of pred... I would say the pain is cut in
1/2, but it is definaltely NOT gone. I am doing everything I can to
supplement the pred. I am still taking tylenol 3x/day (was taking it 4 +
alleve prior to the pred and in twice the pain I am now). My appetite is
slightly lower, and i am "weepy" at times. Also seem to have alternating
times of exhaustion and higher energy.

I am taking omega 3, my gyn, who is a "functiona physician" is testing for
vit D deficiency - how many live in dark climates? This dr uses these
supplements because she says the pred stops body from producing its
own cortisone - hence the prblems getting off it. She says omega 3, vit D,
SLEEP and avoiding inflammatory foods help rebuild natural levels.

I also do acupuncture which takes away the sharpness of the pain-

I have a cousin who takes recovery for other things and swears by it - it is
homeopathic.

Anyone else using any "alternative" therapies? Any luck?pgr555,

I have been off meds for a good while, and didn't try any of the alternative therapies while I was on prescription med. However, now I am taking the Omega 3 also, calcium with vit. D, and about 3000+mg of MSM a day. I do think the MSM has helped my aches. Our part of Oregon tends to be one of those dark climates, in the fall and winter at least, so I'm sure the Vit. D supplement is imperative. I've read that a higher percentage of people in the Pacific Northwest have multiple sclerosis, and they are implicating that to a lack of Vit. D (and maybe some of the other inflammatory illnesses, too). Getting enough restorative sleep is so important, but that part still eludes me.

Reni
What is MSM? Yes Maine has a dispproportionalte number of people with MS
also. I know 5 women who hav it and I know them all independently. Before
moving to Maine I onl knew 1 person who had it and that was when I lived in
Montana - another dark, gray place. Maybe I need to move! Well, New Zealand also has very high rates of MS, and this is a sunny country where people spend a lot of time outdoors all year round. So we also have high rates of malignant melanoma and other skin cancers.

555, I'm sorry to hear you are not having good relief. I wonder why you were started on 10mg? My doc started me on 20, but went back after 3 days and said I wanted a lower dose. So I've been on 10 with total relief of pain and stiffness. So 10mg is clearly enough to control my symptoms. You obviously have a worse case of PMR than I do, maybe a higher dose of pred would have been more appropriate? I'm just thinking out loud here, I don't really know much about this, except that I thought the dose of pred related to the severity of symptoms. Maybe you would do better on a higher initial dose, like 20, and then taper down to find your optimum dose? When are you seeing the doc/rheumy again?
So much for the darkness theory!! Oh well!

I will see the rhuemy for the 1st time Auust 3rd. That was because I was
really assertive when they gave me an August 29th appt! I was diagnosed
and given my meds by my primary care doc. I think he gave me 10 mg
because i am very med sensitive and was really skeptical about taking any
prednisone. Now I have so much relief (can sleep, get in & out of cars,
and pain level has dropped in 1/2 - there are some short times when
there is no pain every day and much time where it is stiffness or aching
rather than real pain) that I am ready to try a higher dose. Should i be
waiting to go to the rheumy or call the pcp an ask him to up dose in the
meantime? Also, have ben trying to lower tylenol. I only took 2700 mg
yesterday and none yet today, but an about to cause this morning pain is
getting me.

Everyone fel well!You're like me, "med sensitive". 20mg of pred made me shakey and weird, and was not happy to carry on taking it. I am more or less fine on 10. But just because 20mg did that to ME, don't you be scared off if your rheumy want to up the dose for a while, we all have such a different reaction to the stuff. Good that you see the rheumy soon, my appointment is for 16 Aug, but he's supposed to be one of the top 3 in the country, so I guess I can wait, lol!. I don't know enough about all this to know whether or not you should expect total or almost total relief from pred or not. At least you are able to sleepand are more comfortable than befre, and that's something. It's the 23rd today, so that's 10 days to wait. If you are at all worried about it, just go talk to your doc (if you can get in to see him/her before then, my doc has 3 weeks wait for routine stuff!). I know that my hurry to see the specialist is all about getting the treatment sorted and talk pred!  I know I worry more about being a "pred head" than actually having PMR! Chico,
I think we would be good buds (or twins) if we were in the same place... I
can't believe how similar we are! Thanks for the words of encouragement. I
have exactly the same reasons for wanting to see the doc. My primary s
willing to talk to me, but i want the "expert" Tried to skip tylenol today, but
that doesn't work... as you said, at least i am sleeping! and drinking water
and eating air...lol I'll let you know what the rheumy says - thanks for
counting days for me. Its sooner than I thought!hey, my appointment is now 2nd August, so we even have co-ordinated first rheumy visits! We can post our "reports" up here. I am planning on writing a list of questions, but am sure to forget some. Would be great if we could compare question lists before we go.Just wondering, what is tylenol, is it a NSAID? You have different names for things to us. The only other drug I take is paracetamol which I find helpful. Hi, Chico!

Tylenol is nothing more than acetaminophen (sp?), a non0aspirin over-the-counter pain reliever. I remember when I was first given a trial dose of 10 mg pred. It took about 4 days to kick in, but then I felt normal for the first time in ages, so I think pred is supposed to totally relieve symptoms. Don't know about initial dosing - some docs prescribe 20 and some prescribe 10, though it is much higher if there are signs of GCA.  I have read that the doctors try to get the dose lowered just to the point of patients having "tolerable" symptoms. I suppose that would be an individual thing, as not everyone's perception of pain is the same, nor is everyone's tolerance of long-term pain the same. Hope you all get good results from your rheumatologist visits. Coming soon. Yes I understan what tylenol is. My point was just that I still needed it with
the pred to keep the pain in the lowest levels.
NEWS: Primary care doc told me today to cut the pred even though I am still
having symptoms. He says when I go to the rheumy next week we can
readjust. Since I don't have any side effects yet and am not pain free, I don't
understand. My husband who is a drug rep says he probably wants to see if I
get equal relief with a lower dose.

I'm stumped, I hav only been low level pain for less that 2 weeks, so I am
feeling worried about chancing being in such bad pain again.

Not sure what to do. Any experience?Hi, pgr555!

Chico was the one asking what tylenol was. Glad it helps you. I don't know why your pcp would tell you to reduce the pred. When I saw my pcp (actually was a nurse practitioner who suggested PMR and recommended the 2 week trial dose of pred), I was only on 10 mg. the first week and then every other day for the second week (which didn't work), and then nothing until I got in to see a rheumatologist, which was months down the road. Maybe the pcp's are reluctant to have a patient continue until they can be seen by a specialist? Aug. 3 is coming soon. Hang in there. I hope you won't have really bad pain again before you can see the rheumatologist.

Reni
OOps, missed the ? about tylenol, sorry

My pcp called this morning - directly rather than through his nurse - after
conversation he suggested upping to 15 mg until I see the rheumy end of
next week. Gonna try that tomorrow ~ wish me luck!Wow! What a nice pcp you have, and to call you personally!!! That's a rarity these days. I'm glad you won't have to worry about being in pain. Thinking about you, and ,yes, wishing you luck. Keep us posted. Take care.

Reni
Good luck with the 15 mg. - that was the magic number for me.  Was at that for 6 wks or so, then started gradual reduction.  Yes, that was me wondering what tylenol was. Thanks nitwit. The pred dose I am on does control all my PMR symptoms, apart from the occasional twinge in my upper arms when I have been using those muscles. If I was still having what I know to be PMR pain, I would expect my dose to be upped, so 555, I think you are doing the right thing being concerned about that. 555, I saw my GP (pcp) today to see what to do now that the 3 week course of 10mg pred was finished today. he suggested I STOP taking pred to "see what happens". I protested that I knew what would happen, ie the pain comes back after 48 hours, but he said that sometimes PMR clears up after a flare-up and 3 weeks of treatment. When I didn't show much enthusiasm for that idea, he said to take 5mg instead of 10. He said it was not necessary to step down the dose slowly, as I've only been taking it for 3 weeks. So the current plan is to start on 5mg tomorrow. Seeing the rheumy on Thursday. So you have gone up 5 to 15 and I have gone down 5 to 5! Guess we'll both soon know how we'll get on! Here's hoping you get some relief. Wish you luck on the 5mg chico! See below for my reaction today to the
15... yes I am very lucky to have a GREAT pcp! The best thing is he really
LISTENS to me. Usually I go through the nurse, but I know I can ask him
to call me directly if I need. This time I didn't ask, he just called!

Some of you may have seen my post about the connection with gluten
intolerance - and my prayer that that is NOT my problem! Well, very
interesting... Last night I had the most discomfort and hardest time
sleeping I have had since I started the pred, This morning was the worst
pain, lasting farthest into the morning since I started the pred... Looked
back: No overdoing, etc yesterday... ok, what did I eat? Had meat
substitute for dinner - you know the crumbly stuff for us veggies... It is
PURE texturized wheat gluten with added flavoring! PLEASE say it ain't so!

The good news is I did take the 15 mg pred today and by pm was feeling
much better. Not pain free, but MUCH better and almost pain free.

Guess I am off gluten for the short term anyway!

Thanks to all of you for the support as I sort through this - may we all be
pain free soon!
hi All!
So today was day 3 on 15 mg and I only took 1 dose of tylenol all day! I have
been stiff and had some intermittent shoulder arm pain that got bad at
times... but really now what are we comparing it too? I must say that this
was the best day i have had in over a year! So the question when i get to the
rheumy next friday is: Is it worth going up to 20 mg and trying to really be
pain free and off tylenol, or am I thankful for this and not go any higher, get
ready to cut back? No side effects yet, except it is 1 am and I am up! Gonna
take some tylenol (getting achy and stiff) and go to bed.
What do y'all think?Oh great news 555, so good for you to have a break from the pain. Surely 15mg is reasonable, I know my doc started me on 20. I've just completed day 3 on 5, down from 10, and still feel good, so I am pleased too. Thursday is rheumy day (Friday for you, isn't it?) will report back after that! Hope you continue to feel better this week. So glad you ar feeling good on 5 mg, Chico! When did you start taking the
20 mg? How long have you been tapering? Here's to being the lucky ones... I
feel so badly for those who are not getting the relief!
Yes I am going friday... will be thinking of you o WEDWell folks, 5 days on 20 mg and I seem to be doing much better. I seem to
be having those migrating phantom pains that I can't figure out that all of
you talked about... you know, why do my feet hurt for a few minutes now
when they never did before - or upper back? I would say i am pain free
about 40% of the time WOW!!! and when I do have pain, it is nothing in
comparison to before.
Yesterday was my 30th anniversary and we went on a 40 mile bikeride ( in
my worst pain, I only felt good on the bike, but with lots of meds and
stretching) I had to take a little, tylenol and my shoulders hurt, but nothing
terrible. The good news is that today I feel ok! Before the day after a ride I
hurt. Maybe this is my "magc dose" as Chico said.
Wishing you all a great painfrre day!
pgrWow, that's a great achievement, a 40 mile bike ride, that's fantastic, well done! So glad you are doing better on the 20mg. I think the extra pains are part of the parcel. I was pain-free on the first 3 weeks of 10mg, and even did OK on 3 days of 5mg. But them I was off pred for 6 days and when I went back on, starting at 10, it took longer to take effect than last time, and now, on my 5th day I am free of stiffness and feel well in myself and mostly pain free, but not completely. Still having nagging little muscle pains in my upper arms, that comes and goes. I really think that PMR and prednisone BOTH change the rules whenever they like! Just when you think one thing is going on, they throw something else into the pot. So I have taken paracetamol tonight. But I guess that 90% pain free is pretty good, Anyhow, I am inspired to get onto my bike tomorrow, I won't go 40 miles, but I'll go down the road at least!
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