Off Pred for 60 days : What Should I Expect?

[EnduranceEngine]

Hi all, just curious, for those who have transitioned off prednisone what should I expect in terms of pain. Should I be 100% pain free? A little sore? And for how long?

I've been off pred for 2 months but still have some shoulder and arm pain, and stiffness in the hamstrings. I'm also seeing some new pain areas, such as elbows (never had that on PRM). In the shoulders it's sometimes sharp, sometimes dull. And sometimes worse on the left and sometimes worse on the right.

My doctor had me taper aggressively (I'm 56 and a very fit long distance runner) given my constitution, so I was only on meds for 64 days, tapering from 20 mg. I never had side effects, and the pred was working well. I could even run and lift weights, split and stack wood, on pred. But we didn't want me on it for any longer than necessary.

But now that I'm off the symptoms are still there, but manageable most days. Some days are good some are bad (like the last few days since we went into a cold spell). Is this normal? Should I experience some pain as I transition off? And will it be like this for months? Years?

I can't seem to find much on the nuances of stopping pred. It's manageable, but I'm not able to do what I use to do.

[PMRpro Ambassador]

If what you had was the PMR we talk about here, then I think it is very unlikely that after 64 days of pred it has gone away altogether. The alternative is of course that it was never PMR in the first place.

Constitution has little to do with how you recover from PMR - otherwise Skinnyjonny wouldn't have been on pred for long either and we do have quite a few current and past members who have been very fit and in some cases competitive standard athletes who have taken more usual times, years not months, to reduce and get off pred.

healthunlocked.com/user/Ski...

PMR isn't a disease in itself - it is the name given to a set of symptoms that can occur as the result of an underlying disorder and there are several, which must be ruled out first. You haven't told us anything about your history - like how long you had the symptoms before starting pred. Some people start their PMR by having episodes that come and go, eventually manifesting in the seizing up that some doctors take as typical. Some are able to get to a very low dose and stop - and are free of symptoms for a few months before they reappear. It isn't unheard of for 1mg, or even less, to keep the inflammation that causes the symptoms under wraps, but none is not enough for them and, like a dripping tap, the bucket of inflammation fills again until it overflows and causes symptoms again which then increase over time without pred.

All you can do is wait and see what happens.

[EnduranceEngine in reply to PMRpro]

Thanks PMRpro for the quick response and the link to skinning jonny. I may have phrased the constitution part a little poorly. I think my Dr. felt I could tolerate some discomfort/pain, and that everyone responds differently, so let's go aggressive and see what happens.

I am finding out that Pred does not cure PMR, just controls the inflammation, so my big question was coming off early, can expect some level of pain for 2 + years? And, what others have found coming off it. Are they pain free? Or have minor pain for a time? I'm confused on what to expect.

[SnazzyD in reply to EnduranceEngine]

I think the pain often becomes too much of a focus. There is no shortage of those who will tough out horrendous levels of pain in order to avoid Pred but sadly it (your immune system attacking you) doesn’t care about willpower and resolve. The issue is, pain = inflammation, it is a signal and if there is inflammation the concern is, what is it doing? I would want to ask the doc if they feel the potential Pred side effects are worse than the risk of possible development of GCA (20% of PMR sufferers go on to develop it), large vessel vasculitis, stroke and aneurysms. Also, will they take responsibility for it? 64 days is a blip in the grand scheme of PMR/GCA and all the guidelines do not condone your Pred regime if PMR is really suspected. The idea is when one comes off Pred there is little or no pain because the inflammation is either resolved (unlikely at 64 days) or at a very low level because the Pred has been reduced over years at the same rate as the condition is burning out. Some people have waxing and waning inflammation for many years which has to be dealt with as and when. This is vasculitis not a gammy knee. I was 54 and very fit when GCA hit in 2017, when I got to PMR levels of Pred it felt like a holiday compared to 60mg and as a result have suffered severe muscle loss and tendon damage. So, see how it goes but don’t ignore what your body is telling you. Good luck!

[DorsetLady PMRGCAuk volunteer in reply to EnduranceEngine]

You are right, Pred does not cure PMR, and it can last anything between 2-6 years - despite what doctor may think.

So if your PMR is still active, as it sounds as if it might be, then you will have a return of symptoms - you will only be sure it has gone into remission when you are on zero Pred and no return of symptoms.

But you have to remember that if Pred was masking any other pain - that will resurface. Bit difficult to tell sometimes....but don’t let it increase too much or it will get out of hand.

[PMRpro Ambassador in reply to EnduranceEngine]

Perhaps your doctor should try it himself! And does he make similar suggestions to patients who develop RA? Pred is PMR's DMARD (disease modifying antirheumatic drug) - they never suggest RA patients stop their drugs and put up with the pain and potential joint damage. Snazzy has explained that link.

Pred doesn't cure - it is a management technique. Take it away and the autoimmune disorder creating the inflammation is still producing the inflammation as long as it is active and the inflammation is creating symptoms - and doing damage to the tissues that are inflamed.

[EnduranceEngine]

Thanks everyone for the responses. It's been very helpful and enlightening. I'll see how it progresses - or doesn't - and make a decision.