A pred reaction I haven't heard before | Arthritis Information

I've been reading all the posts and haven't found one that matches my situation. I'd sure like to know if anyone else has experienced the same thing, and maybe even how they solved it.

I was first diagnosed with PMR 10/07. I started with 20mg pred and the pain was gone in 24 hours. When I got down to 10mg and the pain returned. I went back to 20mg and all was fine. When I got down to 9mg the pain returned. I'm not sure why, but this time by rheumatologist told me to go to 40mg. Of course, all was fine. Then when I got down to 8mg the pain returned. HERE'S THE WEIRD PART: Then I went back to 20mg and the pain persisted. Then I went gradually over 6 days up to 60mg and the pain still persisted. At his point I actually started wondering if I had been slipped placebos. Well, my rheumatologist told me the pain must be from a different, unknown source and I had to gradually work my way off pred. There was some talk of RA, but that was discounted because pred should have taken care of that pain too. I'm now down to 20mg and have worse pain than anytime since this all started. By the way, the pain is worse in the left hip (I had an MRI yesterday and they're talking about avascular necrosis!), right upper arm, right shin and shoulders.

Any thoughts would be greatly appreciated.Then I went back to 20mg and the pain persisted. Then I went gradually over 6 days up to 60mg and the pain still persisted.hi dorny
so sorry to hear you are in so much pain, i had a flare of my pmr a few weeks ago, dr told me to increase to20 mg. at that time i was down to 8mg. the 20 mg made me feel worse, i toke it for three days, maybe i did not give it a chance but i want off of this drug so bad i did not want to have to start all over with the decrease so i am still on the 8 and i do not feel well by no means. hopr you are feeling better soon georgiana
Dear Dorny,

I am so sorry that you are in so much pain. My suggestion would be to get a second opinion. My rheumy is very conservative and would rather decrease me very slowly she is very opposed to the yo yoing ..so i would really consult with more than one rheumatologist and study research and study as much as you can..

also try the anti inflamitory diet..that does help some

do take care and let us know how you are

cathi

This is how my Rheumy does it - so far I have dropped from 60mg to 6mg - had flare up - back up to 60mg - but within two weeks down to 30mg (I have GCA - not PMR).

The trick with steroids is to come down slowly - prepare for the week you are going to drop down and make sure that first week you do as little as possible.

Say you start the drop from 20mg to 15mg - wait four weeks, then drop 12.5mg wait four weeks, 10mg wait four weeks. Now this is the hardest part - drop by 1mg every four weeks till you reach 5mg then every three months drop by 1mg.

Its a long slow process, but it gives your body time to adjust and all your glands, especially the adrenal one to kick in and get back to whatever is normal for you. OK I know that sometimes you have to go back up because of flare-ups - but if you are having a blood test every month and the ESR is stable for you (the norm for you depends on age etc) then you can re-start again.

Also remember that even after stopping the steroids, for at least one year after you must advise any medic that you have been taking them and for how long.

Can I also say - steroids are really not the problem - the damn disease is - without steroids - me I could be blind and I just do not want to think about that at all.

Thanks for your thoughts.

Maybe I should have mentioned that my ESR has always been around 11-12, from the beginning of my PMR episode. My CRP started at 55 and dropped to 15 after a few months, where it now stands. There seems to be no correlation between the level of Pred I'm taking or the level of pain, and the lab results. Dorny,
I don't know what to tell you, or have anything to say really about what you ahve been gong through, except - I hope you feel better soon! I agree a 2nd opinion is in order!

In the mean time, take are of yourself!Not only MUST you come down very slowly as suggested but I have been told that you may require more prednisone each time you come off and then go back up or on, to help with the problem.
RA does not always show up in bloodwork but hot, red and painful joints I often hear people talk about. Do you have any of this?

If your CRP is up then you have inflammation.

Over a long period, corticosteroids may cause such side effects as:

weight gain
thinning of the bones (osteoporosis)
depression and mood swings
increased risk of infection
cataracts
glaucoma
worsening of diabetes or new diabetes in someone who has never had it
thinning of the skin and easy bruising
rounding of the face
difficulty sleeping
high blood pressure (hypertension)
avascular necrosis, an arthritis like condition that most commonly affects the hips or shoulders, and can be treated with total hip replacement or total shoulder replacement

I am still off nsaids as of april and continue to improve....(thank goodness i only took pred for about three months last year) ...had some issues with RLS but after googling said cause could be from mineral deficiency and particularly iron (and low grade anemia is common in pmr) i checked my multi vitamin and it had no iron. I switched to one with iron and have not had any issues since. Hips still sore but I swim in a warm therapy pool almost daily and have massages and go to "yoga for people like me" classes.