I have PMR - an auto immune inflammatory arthritis disease?
It causes pain in the large muscles (inflammation)?
No cure, no known cause?
The steroids reduce the inflammation and hence the pain, but not the fatigue. So please could someone explain why I take them instead of anti inflammatories?
Many thanks
Hi,
Because anti-inflammatories or NSAIDs are not powerful enough to control the type of inflammation caused by the underlying PMR (enlarged rogue cells in the blood vessel walls causing a reduced flow of blood therefore starving the muscles of oxygen, food etc).
The only drug, at the moment at least, that can stop those cells continuing to grow is Pred. The underlying PMR, which is not cured as you rightly say, continues to make you fatigued. Unfortunately the Pred can also make some feel fatigued, so a double whammy!
Hope that helps a little.
Thank you! Great explanation of the cause of the fatigue too. So the steroid probably does have an effect on the fatigue, even if it's not as effective and instantaneous as the effect it has on the pain? My muscles feel fatigued as they're starving I think?
Yes your muscles do feel like that, because during the build up to diagnosis that's exactly what has been happening. Now even though you're on Pred, everything doesn't return to normal overnight - unfortunately!
Plus if you read the notes with Pred (if you can bear to, it's a bit doom and gloom) you will see that muscle weakness can be a side effect. The unfortunate thing with Pred, and most drugs I suppose, is that it gives with one hand but takes away with the other. Bit like life I guess. Hopefully to god side outweighs the bad!
Everyone on this forum has or has had PMR or GCA - and most of us are on pred.
Why are you on pred not antiinflammatories? Because pred works to combat the inflammation and NSAIDs don't for most patients. For some reason, pred obviously has some effect on the cause of the inflammation but it isn't known what or where it acts!
The fatigue is mostly due to the underlying autoimmune disorder - it is a typical symptom of autoimmune disease. In some people taking pred makes them hyper - like the Duracell bunny - and in that case they might feel that the pred is also combating the fatigue. But it isn't really.
And as DL says - muscle weakness CAN be a side effect of pred.
Thanks so much to you both. I want to be Duracell bunny....
Peggles, You don't want to be a Duracell bunny really! It causes insomnia and you find yourself climbing up the wall, so you are absolutely exhausted. I think I prefer the tiredness option.
I agree with piglette! PMR always bites back when you rush around. And your family may not be too enthusiastic either!
When I first started pred my husband said I was like the Energizer bunny (for fun look up Wikipedia to see the difference between the different pink battery bunnies). I was so thrilled to be able to do everything again because all my aches and pains went away, even the non-PMR ones. About two months later I learned from the forums that I hadn't been cured (why didn't my doctor tell me?) and that I should learn to rest more. Fatigue and muscle weakness didn't really hit me until about six months later when I was reducing my dose to the 7 mg level. That was over a year ago and the pink bunny days are long long over. But sometimes now I have a fleeting moment, perhaps half an hour or so, of feeling much like my old self, a memory of what it was like before the pain of PMR and the dulling effects of pred. There is hope. In the meantime I've learned not to feel too guilty when I don't rush around doing lots of stuff that I should do. The dust won't be going anywhere, there will be another day to do the shopping, even after fun times with a friend it's a good idea to put feet up afterwards and relax. PMR is the excuse we overachievers need to allow ourselves to sit and watch the clouds or waves, listen to the birds.... 🌷🦋
I know you're all right but it's so hard to do 50% or so of what I did in November / December. Mentally I haven't changed, what I have to do hasn't changed, I'm just not able to do it and the less I do the more I worry my muscles will atrophy.
Then go for a gentle walk 2 or 3 times a day - which will keep your leg muscles fairly good. Ask your GP for a referral to a physio if you are really concerned and ask for suitable GENTLE exercises to keep your other muscles in trim. It really doesn't take a lot. Tai Chi is recommended by several ladies on the forum and I found adapted Pilates worked for me. Even if I couldn't get up from the floor at the end...
And stop worrying - the human body is quite resilient really!
I know what you mean. I have found it very hard indeed as I had been a multi tasker and always doing something or another. One thing I have had to learn is acceptance. I have learnt that things I felt I could only do myself - or someone else would not do as well as I can - can actually be done by others and it really doesnt matter if they are not done as well as I could do them. I have learnt to make each task into a bite size one - especially things like cooking - peel veg, have a rest, make the sauce, have a rest and if too ill to finish cooking it ask others to finish it off!! Also I found that one task a day is probably enough. Sorry it isnt much help. Hang on in there - it does go into remission eventually I am told.
Most of us were multi-taskers (something to do with being female possibly?)
I couldn't even cook a meal properly - and if a recipe needs more than 4 ingredients forget it now even if it is the only thing I cook! This from what you would have called a hobby cook. But I'm back to multi-tasking at other things. Not worth it with cooking for two...
Hello everyone. This is my first post. Brand new to PMR and already putting on weight having just struggled to lose 2 stone....... I have been put on 15 pred and had my first good day after 10 days of medication. My question is I have a power plate machine and although I definitely wouldn't use it on a bad day I wonder if it might be good for muscle exercise if it is a good day? I'm also experiencing quite a few feverish outbreaks and out of the blue can't cope with any stress .... very odd.
Hi
I've been visiting this forum for quite a while now and have gained loads of valuable information (especially from Dorset Lady). I became ill in April 2016 and was finally diagnosed with PMR in July. Pred relieved all symptoms overnight ! I felt great !! Then over time I felt that I was getting weak, being an avid walker , it was quite depressing . Then out of the blue I met a lady who had recovered from PMR and she told me she bought a Vibration Plate , is this the same as a Power Plate ? so, I went ahead and bought one 10 days ago and have used it daily , I can certainly say that my legs are feeling much stronger .
Being on pred means your adrenal glands can't respond to stress with a burst of cortisol - hence the inability to cope well with stress of many sorts.
Cut your carbs drastically and that should at least help with the weight gain - it has worked for a lot of us.
I used to use the PowerPlate at the gym I belonged to in the UK. Can't find one here or I would be using it now! They have been shown in proper scientific studies to be a useful thing for relatively immobile people to keep muscles in good trim and may help bone density too so have been recommended for use in care homes.
There are different sorts - some vibrate in a different direction and aren't as good. But with either sort you are having to use your muscles to keep your balance.
Yes it's the same thing. We love our machine but I would worry about using it if you are having a flair up. Same as with some other arthritis conditions I think it could aggravate things. However it's very good for muscles and general aches and pains. I also find it brings down my diabetic blood sugars. We need some more advice I think!
Thanks for your reply, no, I wouldn't use it if I felt 'out of sorts' , I'm not sure how to recognise a flare up , what is the difference between steroid withdrawal & flare up? Yes, we do need more advice about our machines .
Steroid withdrawal starts on the first day you take the new lower dose and is your body's response to the change in dose. You can help avoid it by keeping dose reductions to less than 10% of the current dose, at low doses even that may be too much.
A flare happens because the dose is not enough to clear out all the inflammation and can happen either because you overshoot the right dose or because the disease activity increases for some reason and the dose you had been OK at is no longer enough.
So, if steroid withdrawal occurs, how long is it before the reduction is accepted and symptoms disappear ( if at all)
It depends - some people can reduce and notice nothing out of the ordinary, others can reduce the same amount and feel "different" for a few days - or even a few weeks. Usually the withdrawal discomfort will improve slowly with time - so if they don't it may be more realistic to decide they are due to a minor flare of the PMR. And withdrawal is more likely with larger changes in dose than small ones.
When should I start to reduce pred
Balancing symptoms and pred dosage?
Does pred cure or simply suppress symptoms?
advice please 
Next pred step to control pain - your advice please 
