Side effects of predsisone

[smiley67]

What are the side effects of predsisone withdrawal ? Am now on 6mgs from 7mgs and in my second week. What is normal am having stiffness in my hands and off and on pain in my shoulders but all are bearable so far.

[PMRpro Ambassador]

Steroid withdrawal pain usually starts quite quickly - as soon as the dose changes - and then tends to improve over the next couple of weeks. If the new dose is not enough to control the PMR inflammation the pain may take a few days or even more to start and then gets worse over time.

If you dropped the 1mg overnight from one day to the next that is quite a big drop - more than the recommended 10% which was what was originally recommended to minimise the withdrawal problems. It is why we suggest spreading a reduction over more than just one day and to make that reduction as small as possible.

[smiley67 in reply to PMRpro]

Thank You

[Angela123]

Hi Smiley67. I am at the same stage as you. Down to 6mgs from 7 and into my 4th week. I have wrist pain and aching fingers. I had shoulder pain for the first 3 weeks and dreading a flare but that's gone for now. Feeling very tired. I am to reduce to 5mgs next week so I expect it will all start again. I am taking methotrexate which is for my RA and should help with the reduction of pred, but as PMRpro keeps telling us, slowly slowly is best and is proved to work well. I'm just doing what I'm told at the moment and keeping my fingers crossed. I understand the withdrawal symptoms are much less if you reduce in small amounts. Good luck. Angela

[smiley67 in reply to Angela123]

Thank You

[PMRpro Ambassador in reply to Angela123]

How quickly have you come down from 9mg? You say you are very tired - that could be a sign that your body is not catching up with producing its own corticosteroid, cortisol, which is made by the adrenal glands. We naturally produce the equivalent of about 7-8mg pred every day and once you get below this sort of level you need to watch out for this problem. It isn't so much the adrenal glands have stopped working as many people think but that the whole feedback system that governs it takes time to settle down again to do its job properly.

Personally, whatever doctors say, at this level I feel it is better to wait a week or two to get stable before starting on another reduction, especially if you have been in pain for the last few weeks. It may not be a flare but constant pain is exhausting on its own so a couple of weeks with no pain would give you a bit of respite. And many doctors like to keep patients at 5mg for a few months, sometimes longer. It seems to make the later reduction easier.

[jolaine75 in reply to Angela123]

Yes, I have similar problems I started on 20mg July 2013, and told to reduce, I am on 6mg with another reduction to 5mg next week, Like you, shoulder, wrist,finger,arm pains and fatigue seem to get the bundle all together,problem for me is being lethargic also,and everything seems a effort.Because on the outside I look great, it is hard for others ie: family

to understand what is occurring within.

My husband has gout and you can see his wrist is swollen...and this seem to draw attention to others,because mine is within I am sure others do think it is in my imagination...do you also go along with this

[Angela123 in reply to jolaine75]

Yes. I am constantly being told how well I look when I feel like death warmed up! The extreme tiredness comes and goes. I have pain which comes and goes mornings and evenings mostly but no swelling. Seeing my Rheumy in 2 weeks so will discuss then. I don't want the pain to be RA related in case he increases my Methotrexate and I want to keep reducing the pred if I can. The pain etc is bearable. The fatigue is a bit harder. My boss lets me cut short my afternoon which helps. I'm reducing from 6 to 5mgs tomorrow. Angela. PS. I understand gout is VERY painful. Glad I don't have that too.

[Angela123]

Hi. Yes that makes sense. I've reduced from 15mgs in January to 10 in February and 7.5 until early April. Was then advised to alternate 7.5 one day and 5 the next but I felt terrible so went back to 7.5 until my next appointment in June. Went down to 7mgs then for 2 weeks and 6mgs for the last 4 weeks. Then I am to drop to 5. I have another appointment soon. Perhaps a half mg drop might be better or none at all depending on how I feel?

[rory61]

Hi All, now you guys have me worried. I have had PMR for about 4 months now and after being prescribed 5mg without success, I am on 26mg (for 3 mths) and have no symptoms that bother me. My GP has explained the long term affects of pred and wants me to taper off to 12.5 in one more week. Am I right to say this is a too big drop in dosage? Does anyone have a successful plan?

I am hoping that my lower than normal dose is due to getting diagnosed early?

Rory

[polkadotcom]

You are supposed to be more than halving the dose of 26mg next week, having taken it for 3 months? Do I have that right? And you were started on 5mg? I'm asking because that has to be one of the oddest treatment plans I've come across.

If that is the case, then I do feel that you should check with your doctor. It is an enormous reduction and to me spells disaster.

Most patients are started with either 15mg or 20mg (they are now beginning to take weight and body build into account and it seems that men do better on the higher dose) and should be kept on that until it is clear that the inflammation is well under control. If you have sensitive blood markers then that is one way of telling (not always the best way as it is retrospective) and the reductions can begin.

Generally, getting down to 10mg can be achieved relatively quickly - either in 5mg drops or 2.5 but once there it is better to go very slowly the rest of the way down and I mean slowly.

There are still doctors attempting to treat PMR as a short term condition and it isn't. It's long term and the most conservative estimates accept that a minimum of 2 years on steroids is necessary.

Going back to 'treatment plans' there is no real cut and dried accepted general method of reduction because it isn't possible. Everyone has PMR as an individual and your responses both to that and to the steroids is going to be as individual as you are. But cheer up - the very fact that you are male is in your favour, men do seem to have a much easier time of it.

[rory61]

Thanks polkadotcom, you make a lot of sense, i had to tell him what i found out from this forum and thats when we changed the dose up. I take 12.5 morning and 13.5 at night. Along with the vit d/calcium iron magnesium, I am also taking amino acid "BCAA with L-Glutamine & Arginine but not sure how this works but I have not had any pain relief medication for 3 weeks now. fingers crossed.....

Thanks for your replies.

Rory