I recently went down from 11.5 Mgs of Prednisone to 11 in 7 days then to 10.5 mgs after another 7 or 8 days with only minor issues. 8 days after that I weaned another .5 mgs down to 10. Three days at 10 and I had a pretty bad shoulder flare with much pain, so I went back up to 10.5 Mgs. The pain went away almost immediately, and now I have been at 10.5 for 10 days. But while I am experiencing no pain, what I am getting is a stiff neck and upper shoulders, where I constantly have the urge to gyrate my neck back and forth, and when I do I feel mild sort of " cracking "... I think what some of you in the UK would call " niggles." Along with this I get sometimes get very short periods of tingling down my arm. I also get morning fatigue that usually doesn't last very long but today was worse than usual. I am undecided if the fatigue is a side effect of the Prednisone, or the sleeping pill that I take to combat the insomnia from the Prednisone, or PMR itself.
I have experienced many of the side effects from the Prednisone such as: anxiety, depression, insomnia, fatigue, and constipation coupled with frequent urination, so you see I want to get off the Prednisone as quickly as my body will allow. That being said my doctor says that it's hard to tell what may be a side effect of the Prednisone, or caused by the inflammation from the PMR. I really want to wean by .5 back down to the 10 mgs before the flare in the next few days but with the neck stiffness should I wait longer? Did anyone else experience this neck stiffness and cracking and is it a sign that it's too early to wean, considering that it's without any pain ? Any advice on this would be greatly appreciated.
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micpenn222
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By trying to rush down to zero it can often take longer than taking things slowly and can be a lot more painful. It is sensible to leave three to four weeks between reductions as otherwise you may go past the point where the PMR raises its ugly head without you realising it. As you reduce you will find that the side effects will subside.
You reduction is way too fast as are your expectations. But I know how you feel about getting off Pred. One thing this forum taught me was PATIENCE and that was a hard lesson for me. I had very few problems reducing from 50mgs in Aug 2021 to about 8mgs last September. At that point the problems started. But I learned that there is a rythm to Pred reductions when we start hitting the lower doses because we are then at the stage where our "lazy little adrenal glands" have gone to sleep and are proving very difficult to awaken. My rhythm goes like this and it's the same very time. But first let me say I've never had a pain flare when reducing. With me it's crushing, crippling fatigue and loss of motivation to even get out of the chair. But back to "the rhythm". Every time I drop at these lower levels around 6mgs, I spend a week to ten days feeling like the walking dead. The time of day when that fatigue hits me varies. Some times I just don't really wake up at all but I am upright. Even after 10 hours sleep, my wife can tell at the breakfast table what kind of day I'm gonna have. Other days I actually do manage a mornings work and then I'm dead and in bed after lunch. I may also get splitting headaches but not always. After a week to ten days, the crushing fatigues get less and less until they're almost totally gone. I then have to wait about 6 to 8 weeks to make the next downwards step and I feel bright enough, well enough and CONFIDENT enough to face the fatigue again. And when I do, sure enough it all starts again. Fatigue, headache, bed 18 hours a day, slowly improving for a few weeks and then hit it again! Rinse and repeat! But note - I'm never 100% functional during this. Its matter of degree of how "awake" I am. At lower pred rates we are right in the borderline of our body's ability to produce our own cortisone. That borderline is a razor's edge and its a different edge for all of us. Some get problems at 20mg or 10mg, some at 5mg and like me, I'm having probs at 2.0mg. I'm currently at 1.5 and I've felt really bad this last ten days. Frustratingly tired and weak etc. But yesterday was a good day and today is feeling that way too. The really bad days on this latest reduction are behind me, I know they are, that's how it works. But come the next Pred reduction, it will all start again. Once I'm off Pred, I will have cut out the many bad side effects that Pred creates but I know that my PMR has not left me, It's lurking there, like a dormant volcano. But at present, I have a lid on it. Motto? Slow down, right down, expect less than you'd expect with a normal illness and most of all rest, sleep, and get used to not being what you once were. You can't fight this monster in hand to hand combat. You have to creep up on it, trick it, but never try to show it you're the boss. Listen to the fellow sufferers on this forum. There are commonalites with all of us and you'll soon see them. This place is better than most doctors and I have a good one. Some aren't that lucky. Good luck.👍
Much too fast as others have said -you need to be a each dose at least 3-4 weeks to know each one is sufficient before you drop,
Rush it too quickly and you end by actually having to take more Pred and it takes longer to get off the steroids -rather negates your aim…
So back to 11.5mg and hope it will be enough to get things back under control…if not you may need more…when you have stabilised, ease your foot off the gas.
Hello, firstly I think your rush to get to the finishing line has been too much for your body. I’d say 0.5mg per 2-4 weeks not 1 week. A two week rest on the new dose allows you to see if the PMR is ready or not too. Going at a weekly drop gives no time for getting used to your new dose and seeing if it is sufficient. You risk ending up on even more Pred overall if you keep flaring or reacting badly. I was quite affected by Pred but on the flip side this also seemed to mean that my body was also super sensitive when it was removed and hate it all I liked, I had to be measured.
Your neck - This could easily be muscular tension from weakness and/or poor posture and overuse in a repeated way eg. Looking down a lot. The clicking and arm tingle could be nerve pressure from tense muscles or spine related. I’m not a clinician and can’t see you, but while all this is going on it is a good idea to keep your shoulder neck ‘house keeping’ in order. I had all sorts of issue with that area just from the Pred effect on my muscles, long term being less active and increased susceptibility to muscle injury. I thought I was getting a flare of GCA a few times but it turned out to be stiff sternokleidomastoid muscles. Whatever the cause of your issues do keep an eye on this
Once under 10mg you will be needing to go slow anyway, due to adrenal glands needing to start to work. You really do have to slow down for this part or feel mich worse than you do now. Please do read the section on adrenal glands in the FAQ section on the right here. Being knowledgeable and prepared will save you further problems and disappointment.
I've noticed the use of the word wean a lot recently and I'm not sure it is helpful. You are never reducing the dose relentlessly heading for zero and to be of that mindset will almost always end up in tears.
You start with a dose that is higher than you are expected to need longer term. Having cleared out the existing accumulated inflammation, you then start to reduce the dose very slowly in a process called titration to identify the lowest effective dose - the lowest dose that gives the same relief as the starting dose did. That will be higher early in the journey than it will be later - usually at least.
What that will be is never apparent at the start - there is nothing that predicts that and the only way to find out is to proceed slowly and carefully. I responded in less than 6 hours to my starting dose of 15mg - some would expect that to mean an easy journey. In fact it was over 4 years before I managed to reliably get below 10mg and it turns out I have a long, resistant version of PMR.
The aim on the way is to be as comfortable as possible and able to function. The underlying cause of the symptoms we call PMR remains active for an indefinite period of time, the pred is to allow you to have a better quality of life until it burns out and goes into remission. You can't force the tapering, you will need what you need, At first the PMR is in charge, once you get below 10mg it starts to share the role with adrenal function - but the bottom line is that neither you nor your doctor can do anything to influence that except by exercising patience.
Thank you so much to all that replied to my post. I guess I will have to exercise more patience , and maybe consider that some of what I am attributing to side effects of the prednisone are actually from trying to reduce to fast. The odd thing is that my rheumatologist had me on a reducing schedule of 2.5 mgs every 20 days, all the while ordering monthly blood tests in which the inflammation markers ( ESR, CRP ) through all this remained quite high. She ordered these test but looks like she paid them no heed. Anyway I have since left her and am now being treated by my GP. Only in my last blood test which was at the beginning of Dec has my CRP went back to normal, while my ESR still remains high, but not as high as it was before. Once again thank you to all on this wonderful site.
In general it sounds a bit rushed to me. From 10mg I reduced 1mg per month sometimes longer. At 8mg I’ve come down in 0.5mg per month -ish. Getting off pred is important but stress a bit less about it. You need a life in between! You’re doing well keep up the good work just maybe slow down a touch. X
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