I'm in my third year of PMR. For the last six months I've got down to 4 mg of pred with very few symptoms. However each I time I try and reduce to 3 1/2 mg I begin to get some symptoms. Either because of this reduction or over doing it in the gym, for a week now I've been having problems with my shoulders at night which are painful enough to keep me awake. I tried going back up to 7 mg but it didn't seem to help very much. The pain from my shoulders gradually goes away during the day and I don't seem to have any other symptoms. I'm not sure what to do. It feels like tendonitis which I have had before. I have had several Cortizone injections in my shoulder which have been effective in the past. Not sure whether to increase my Dose to try and control the pain and then how quickly I should reduce back down to where I was or do I go back and have another injection in my shoulders, particularly the right one which is the most painful at night. I'm disappointed that after things have been going well for a long time I've got this setback and I'm not just not sure what to do: how much to increase, how quickly to decrease again or whether to go for injection?
First of all - when you get to a dose where you try repeatedly to go lower and it fails it is usually your body telling you that you have got to your goal: the lowest dose that manages the symptoms as well as the starting dose did. Then it makes sense to just rest there for a few months before trying a small reduction again - preferably using the DSNS approach if you weren't already. By this stage the percentage change you are asking your body to accept is much higher and whatever some doctors will try to say, it does make a difference for a lot of people.
However, your should problems could be muscular and due to something called myofascial pain syndrome which is often found alongside PMR and is improved at higher doses of pred but returns at lower doses. It is caused by the same cytokines (inflammatory substances) that cause PMR but instead of being all through the body they are concentrated in the fascia (the transparent skin you see enclosing muscles) and also in trigger points which can be felt as hard knots of muscle fibres in pairs on either side of the spine in the shoulder muscles, about waist level and in the lower back. They respond well to local steroid injections - but massage therapy can also mobilise and disperse them if it is done properly.
Or you may be developing busitis in the shoulder - same applies as for MPS: often found in PMR, also inflammatory and responds to pred...
C'est un rappel intéressant de voir que lorsque vous réduisez à 4 ou à 3, il vous reste encore du chemin à parcourir et que vous devez utiliser la méthode DSNS. Il semble difficile de différencier entre la PMR, la prednisone et toute arthrite existante, etc.
Peut-on supposer que la prise de prednisone a effectivement aidé à soulager certaines de nos douleurs et courbatures normales... et a peut-être masqué des blessures ? J'essaie de désigner ma douleur liée à la PMR comme une douleur liée à la PMR uniquement lorsqu'elle se situe dans mes « points clés » de la PMR... c'est-à-dire les biceps (pas l'épaule elle-même), l'aine (face interne de la cuisse), etc. mais la douleur ressentie derrière les points de la PMR peut-elle être une douleur myofasciale liée à la PMR ? Merci..
I know a few people have found that once they are below about 5mg they see a return of aches and pains that are far more likely to be aging or OA than to be PMR. I don't know if it is true - but what I do find is that sometimes I try a reduction and get aches that are difficult to explain - and I wouldn't have thought were steroid withdrawal as I reduce so very slowly. By going back to the last dose, waiting and then trying again I find that by the 3rd or 4th attempt it works. Is that just slowing the speed of the reduction down even more - or is it coincidence?
This discussion speaks to me. I'd been trying to do as the doctor said when she found I was at 1.5mg: use up my remaining pills, then stop and "see what happens". Although I knew better I thought it wouldn't hurt to at least give it a try and started a new taper sooner than I normally would have. Today I abandoned the attempt to get to 1 using DSNS, and actually took 2mg, will wait to see how I am tomorrow. Really, why would she encourage me to risk losing all my really good progress for the sake of getting off pred a few months earlier? And, as I said, I knew better! Thank goodness for DSNS.
It took a year for me to get from 15 to 3, another year to get to 1.5. I think it's fair to suggest that if PMR is gone and all I now have is pred withdrawal, I could still expect to take up to another year to get to zero.
What I found was happening wasn't just the aches in fingers, back playing up, etc, which must be OA related, but yesterday I struggled to get off the floor after exercising. Believe me, my heart sank.
I'm presently slowly reducing from 3/4mg to 1/2 mg. (diagnosis of PMR in July 2013) and cutting the tiny 1mg.tablets into quarters is a pretty crude effort - lots of dust and big quarters and little quarters . . Apart from that, even using the DSNS method, you DO feel the results of a reduction pretty quickly, especially at the start of a reduction - for me it's upper arm discomfort which mostly disappears as the day goes on. When I sluggishly get to the end of the 'new' dose, I keep it at that for a couple of weeks before I try another 'new' dose. It's really difficult at this low stage since any reduction is way in excess of the 10% advised one. . . .but, so far, I'm doing ok.
Continued good luck with your own efforts - there may well be a pred.-free life out there at least for a while!!
The 2mg really worked well today. I started out headachy and in pain all over. Took a few hours to improve. Took tablets about 8:00 am, now after 6:30 pm and have felt better for several hours. This kind of confirms it's either pred withdrawal or PMR, not OA, which I needed to know. And the headache went away without any other painkiller. The past couple of tapers had gone well, especially when I realized I could push through increased pain at midpoint of DSNS. But this time the pain started kicking in at the beginning (it really was too soon to start this taper) and today was the mid point and I said, no way, this is the worst I've felt for over two years.
Thanks Eileen. I will go back to trusting my instincts. I think I wanted to believe the doctor's optimism bu I've learned my lesson! thanks for your support.
Cela a vraiment du sens, comme vous le décrivez. C'est pourquoi il n'y a pas d'arrêt "cold turkey" avec la plupart des médicaments... même 1m est quelque chose ;)
Un ami m'a mentionné aujourd'hui que son médecin pense qu'elle pourrait avoir une tendinite à l'épaule/au bras car cela lui fait mal la nuit et le matin, puis cela s'améliore au cours de la journée. Il est difficile de ne pas prendre plus de prednisone puisque nous ne pouvons pas prendre d'AINS, mais abandonner à 4 mois n'est pas une option ! J'ai été tellement "entraîné" à compter sur la prednisone, surtout quand on ne sait pas si c'est lié à la PMR.
Exactly, Kathy. This morning I woke up feeling ever so much better, and took 2mg again. Tomorrow, if still feeling okay, I'll go back to 1.5 and will wait a while before attempting next taper, as I should have in the first place!