Has anyone experienced extreme muscle weakness whilst taking predisolone? My overall symptoms have really improved but my muscle weakness is still very much there, some days worse than others, just walking down the stairs makes my legs weak and shaky and I can't walk further than 20/30 metres without the same effect. The same happens as soon as I start using my hands, my hands get very shaky and ache. My consultant has suggested it may be a side effect of predisolone instead of the vasculitis as I thought it was and I am interested if anyone else has experience of this.
Many Thanks
Jenny
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Galaxy2
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I suffered from restless legs and muscle spasms when taking prednisolone. The recommendation was always to take it first thing in the morning to mimic the body's own cortico-steroid production. Taking it later in the day is also commonly known to cause insomnia. Healthy wishes.
Its more weakness although I still do get the muscle spasms and twitches, I have been offered rituximab now but have been told to consider that this symptom could be the result of medication and/or fibromyalgia has been mentioned so to take that into consideration in to my decision on rituximab.
Yes Jenny, I also have muscle weakness in my legs, so much so that for a long time I could hardly get out of bed or up out of the chair. Now I can walk, not too far and on the flat, but I have to use a stick. I think I have a double wammy in that the WG affects my trachea so my breathing is compromised and, therefore, I am easily out of breath. The muscle weakness has always been put down to the effects of the Pred. Can't say about the hands though, thankfully I haven't had that problem.
I can say yes to this, too, but it has crept up on me gradually over a year or so. Sometimes my leg muscles (no trouble with arms or hands) just won't work as they usually do. They feel much weaker and I also find it harder to walk in a straight line, turn etc. This usually lasts a few weeks, then returns to almost normal before starting again days or weeks later. I was wondering if it was the MPA.
Thanks for raising this, Jenny. Perhaps by sharing experiences we will have something to report to our consultants eventually. What dose of pred is everyone with this difficulty on? I take 9mg a day at the moment.
I have Churg Strauss Syndrome and have had muscle weakness in both my arms and legs since diagnosis nearly 4 years ago. I have been completely off steroids for nearly 3 months and I still have the weakness. I, personally, think I will have this permanently but I am trying to rectify it through exercise (when I can manage it!).
John believes that it is the Vasculitis that causes the muscle weakness more than the prednisolone. I will get him to talk about this tomorrow, we have had the granchildren today and he is absolutely jiggered and has gone to bed.. but will remind him in the morning.. He has talked about this at length with his consultant.
I have had muscle weakness had it before being diagnosed with WG had 3 months were I could barely walk and could not do much at all for myself had been on a high dose of steroids. Have had it when back up to 20 mg steroids and again after the first two doses of Ritximab. Improving now down to 5mg steroids but was helped after the first doses of Rituximab by going to the gym to increase muscle strenth. I had muscle weakness in my arms and legs and after the first two doses of Rituximab could barely walk or hold anything as both my arms and legs shook so much..
Thank you everyone, some really interesting feedback. As I had muscle weakness before I was on steroids which came hand in hand with numbness I have always thought the two were connected, but now I am feeling so much better am not sure what is causing my symptoms the pred or still the vasculitis. It wasn't long ago I was crawling on my hands and knees at home because I was so weak so have really made progress but just want to be able to get out and about without being so limited. Thank you
Thank you so much for your post. I am 6 months into treatment and my legs are so weak I have real problems getting up the stairs and I can't get up off the floor unless there is something to grab onto. You have given me some hope. When your strength started to come back were you off the steroids r just on a lower dose?
I still take steroids but have been on 5mg for a long time. I do remember how bad my legs were, shaky weakness that would affect my confidence as I was so scared of falling all the time. My legs are so much better but I don't think in my case it was all prednisolone but also the nerve damage that just took time to heal. However I do think prednisolone added to the symptoms.
What type of vasculitis do you have? Have you been diagnosed with any form of nerve damage?
I know its a scary time, all these symptoms and no real explanation from doctors at times.
I have had WG for 5 years and found both my arms and my legs were affected by muscle weakness. It was an effort to do anything, especially if it involved lifting my arms above my head (like hair washing for instance). My consultant said it was a side effect of the steroids. (I was on 10mg a day for a long time then gradually reduced to 5mg then none.) I came off steroids over a year ago and found my muscles were slightly stronger after a time. Earlier this year I had a mild flare and was put back on steroids for a few weeks. The muscle weakness returned, and though off the prednisolone 3 months now, I am still feeling weak and a bit shaky at times. Maybe it is something you can't fully get over.
I have had muscle weakness since I first became ill over 7 years ago and it started before I was put on any medication it got a lot worse a couple of years ago when my Vit D was very low it was imroved slightly with a VCit D injection but I still have problems my legs don't work properly to the extent that I can not walk very far and have to use a wheelchair to go any distance I have the same problem with my arms and hands as well so I am restricted to what I can do. Stairs are one of the worse things and once down in a morning I don't go up again until bedtime. I only realised how much the stairs affected me when we had a weeks stay in a place all on one level it was wonderful. My Consultant is not sure what is causing the muscle weakness and spasms and says it might be like the extreme fatigue and is something may not go away. I am on 8mg pred (doubling up when ill) and 2gms MMF
I have muscle weakness, especially in my legs but some days it it worse than others - I live in devon so there are hills everywhere, one day I will manage to walk up a hill without too much discomfort, the next I will have to stop 2 or 3 times due to the weakness and pain in my muscles. Walking on the flat I can manage a bit further. I've always put it down to the pred (currently on 10mg which is the lowest I've been for about 5 years)
i agree with all comment too..have had WG since July 2010.
On week four after my second ever dose of rituximab i am feel awful, weather not helping. went to addenbrookes yesterday Dr said people don't seam to notice any improvement for 6 weeks so 2 to go.. however i must say that i have had no nose bleeds since my last dose four weeks ago which is fantastic as i was having nose bleeds three times a week before..even (jonny said it looked better) I i must add the leg weakness is the thing that gets me down the most..but is it much better than the weeks before i was diagnosed as i was unable to walk. Dr have also said leg weklness may be due to steriod myopathy, now on 5mg pred and as of yesterday azathioprine 175mg has been stopped..so will wait and see..if the weakness/ tremor's improve.
similar to most above. I put it down to the Wg and fibromyalgia. I shake a lot, my hands in particular. I have weak muscles.
Any of the following can happen:- I wake up and cannot move; my leg muscles can tremble/shake independently [every movement is a marvel!]; I know I'm walking but feel nothing but my feet; I try to sit /lie, get up or change position and nothing happens. I've found the shared replies have helped thankyou.
Thanks so much everyone for sharing your experiences. It helps so much to one get all the feedback from others who have the same problems rather than just the doctors opinions from a medical perspective, but also so good to know that we are not alone and there is so much support out there. Thank you
I have weak arms and legs, although in my circumstances it is nerve neuropathy and axon damage in motor nerves that has caused it. Like many others I'm sure I experience joint pain and limb pain.
I can't say that this has either got better or worse since being on prednisolone.
I have 'uncatagorised' vasculitis, have been on pred. for years. 'They' have scaned me, several times, for muscle weakness and bone thinning; so far no sign, which is good. I don't get much that is 'good'; I'm on dialysis, three times a week, for a start. Still I, like you, am still alive; beaten the 'odds' by a long way!
I don't know if this is any help, good luck anyway
I also suffer from muscleweakness when I was taking pred for my Cerebral Vasculitis and my neurologist referred me to i respiratory consultant as I suffered a lot of chest infections. The respiratory consultant, after many tests decided that the pred had caused my lungs to become 'squidgy' ( his words!!!) and that the weakness was probably permanent! (as BerkshireBird also says)It is harder for me to get sufficient oxygen due to lung weakness. He also said that I might be able to return to some former fitness but this would take many years!!
I found out earlier this year after months of being sick that i have systemic vasculitus. Dr put me on 60m of steroids a day and slowly tapered down to 5m and had a flair up and back to 20m daily. now having weak and achey legs and arms. Was wandering the same thing is it the vasculitus or steroid? I didn't have these issues at first even when I was on 60m a day. ??? Sometimes I think im I loosing it. Lol. Good luck though!!
I have gca pmr large vessel vasculitis ,type 1 diabetic ,and addisons disease,my consultant says the pred can cause muscle weakness ive been on them 6 mth down to 20 mg one day 15mg next for 1 mth then stick on 15mg til I see him in jan.Ive had and still have leg muscle weakness and fatigue.Ive had cyclo treatment infusions they cause weakness also been told ,I think with auto immune illness fatigue is part of the package I think.I asked wether it could be vasculitis or steroid they said it could be a bit of both.So much uncertainty with it I think aswell.I force myself for half hr to 40 mins walk and im done in by the end of the day,been off work for 6 mth ,hoping for strength and stamina to return so can do my job which is a manual one ,but that's another issue.All the best to all.
What is interesting is that I asked the question well over a year ago and now I can answer my own question, I am still on the same dose of pred but my muscle weakness is much much better. In my case I think a combination of nerve damage and muscle weakness was caused by the vasculitis and it all takes a long time to recover. I can walk for a good 20/30 mins now at a good pace, a little different from days when getting to the bathroom from my bed was a huge effort. Interesting to look back on an old question, sometimes only time can tell, I think drs are so quick to dismiss symptoms and blame side effects of medication. Good luck to you both, jenny
Hi Jenny im pleased that your feeling better.I agree they tend to blame side effects for muscle weakness amd fatigue.There sounds as tho there will be light at the end of the tunnel hopefully as far as less fatigue and weakness and stamina is concerned.Ive started reduction of steroid 15mg then 20mg on alternative days for a month,then 15 mg til I see consultant in jan,ive also started azathioprine builging up to maint dose of 150mg daily .
Yes I think it just all takes time and I found reducing the steroids gradually was key. I have been on 7mg for a long time now which I have found is the dose I need to be on to keep my symptoms under control, I take mycophenolate which took a good 6 months to work fully, Good luck with it all
I see you wrote this 4 years ago Jenny and I wondered how you were now. I am taking 15mg pred for PMR and have been for 6 weeks. Although the pain has eased of PMR my legs and hands are terrible and just as you describe. I am wondering if it could be a side effect of the pred as it seems to be getting worse and I have a terrible fear of falling over and have to have someone with me if I go out now.
I am still on prednisolone but only on 4mg now. I never really came to a conclusion whether it was the pred or my symptoms which were causing my weakness or a mixture of the two. I did have nerve damage and think my doctors were very quick at times to blame the prednisolone for my symptoms as they were so eager to get me off it. The weakness did get better over time so whether that was my body adjusting to pred or the nerve damage recovering Im not sure. One thing though is I am much better and the only time I notice really weak legs is when I am reducing the dose which I only do by 0.5mg.
I hope it gets better for you, I remember that horrible feeling of being afraid to go out and always needing the reassurance of walking by a wall to lean on etc as my legs were so weak.
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