Tapering from 1.5 to 1 with DSNS method and still having pain. Could it be something else?
Posted , 16 users are following.
I am in year 4, started at 20 mg which I staying on for 5 months before starting to reduce. I have had a few flares along the way, but I am finally down to 1.5 but it has taken three months to get there from 2 mg and I am still experiencing pain in my thighs and shoulders especially after any amount of sitting. My doctor thinks I have developed some type of atrophy in my legs and its not PMR any longer. (SED went from 64 on diagnoses to 20 now). I am doing yoga and curling 3-4 days a week, with walks when the weather allows. Every time I try and exercise I find myself in more pain. Activity makes it worse, yet I am determined to get back in shape and lose the 40 pounds I have gained while on pred. My doctor wants me off pred (two months ago) as my blood sugars are creeping up and my blood pressure and heart issues are finally under control (with medication). My gut tells me the prednisone is hurting my body more than it is helping, so I would like to safely make the next reduction. My question is about the muscle atrophy. Has anyone experienced this and worked their way back to muscle strength?
0 likes, 7 replies
bob73443 Nancy_O
Posted
my story duplicates yours almost exactly. I'm also going from 1.5 to 1.0. I walk 10000 steps a day and am active with a chainsaw and splitting wood with log splitter but cannot use weights without a lot of residual pain. yes my muscles have atrophied but not extremely. I'm 71 and am stiff whenI stand up but attribute that to my age. all in all I have no complaints especially in comparison to some.
wish you the best
carol_ann35477 Nancy_O
Posted
Hi Nancy,
I do not have the problem with thigh pain. I am just wondering if you have seen a physiotherapist? If you have muscle atrophy a physio assessment might be helpful as you may need more specific exercises to increase the muscle strength which in turn could hopefully decrease the pain. I am thinking this because in August I had a hip replacement. Following it I could literally not lift my leg off the bed or floor. It was different as with this surgery the hip muscle is very abused. It was amazing though at the prescribed exercises how quickly the muscle strength did return.
I was interested in your post as you state you are now in year 4 starting with 20mg of prednisone. I am starting year 3 and have only been able to reduce to 15, whenever I go lower I seem to have flare-ups. Te pain is not as much of a problem as the fatigue which is for me exceptionally bad. It is such a frustrating disease, and trying to reduce the prednisone is also very frustrating. I almost want to give up and just stay on the prednisone as at least then I am able to function in a reasonably normal way. Has a lot of you reduction been in the past year, or has it just been a gradual thing. It is a bit of a vicious circle as loosing weight can often help reduce blood sugar, but it is difficult to do that while on the prednisone. I have been reading some articles recently on intermittent fasting as a good way to loose weight. Not sure if it will work while on prednisone but am thinking about it as I have also gained weight due to prednisone and inactivity. Good luck with getting off the prednisone and getting rid of your thigh pain.
Carol Ann
amkoffee Nancy_O
Posted
I think it sounds like your over doing for someone with PMR. This disease can cause a lot fatigue. And I don't mean sleep but muscle fatigue. I am not suggesting that you stop exercising all together but I think you need to slow down by quite a bit and gradually taper up in intensity. just like you would taper off your Prednisone you want to taper up your exercising. You may even need to find a different method to do your cardio that will not stress certain muscles that plague you the most. If you continue at this rate you're more likely to injure yourself permanently and have permanent long-term pain.
anne28129 Nancy_O
Posted
i go to yoga and pilates which helps with my muscle strength. I ALSO SEE THE PHYSIO EVERY TWO WEEKS TO GO THROYGH EXERCISES AND HAVE HEAT TREATMENT ON MY NECK. Due to the pain i was getting last year, before being diagnosed with PMR and GCA I have fallen into bad habits and my posture is dreadful! The phsio has helped enormously but it hasnt been without pain
Hope you are soon better
EileenH Nancy_O
Posted
I think it is far more likely that you have gone to too low a dose to manage the PMR inflammation. Don't be in denial - pain and stiffness after sitting is a typical symptom of PMR. It doesn't matter how slowly you reduce to remove the complications of steroid withdrawal and body adjustment to a new dose - you will not be able to manage without the amount of pred required to wipe up each day's new dose of inflammation. That continues, irrespective of pred, as long as the underlying cause, an autoimmune disorder, is active.
You are never reducing relentlessly to zero, you are looking for the lowest dose that manages the inflammation - PMR requires pred for an average of 5.9 years, some less, some more. Go too low and the PMR symptoms will come back as the inflammation builds up like a dripping tap will fill a bucket eventually, however slowly it is dripping.
I had severe myopathy when I was on methyl prednisolone. I was switched to a different form of corticosteroid and started walking as much as I could - I was on crutches at the time for another problem - and my muscles returned to normal. All of us should really be given appropriate exercises to reduce the risk of steroid myopathy right from the start, especially if we are on high doses of pred for GCA. And there are ways of managing steroid induced diabetes - not least cutting processed white carbs from your diet. Both cutting carbs and keeping walking as much as you can even if you can't do other exercise is something we bang on about on the PMRGCA forums all the time - for good reason 😉
noosat EileenH
Posted
Thanks Eileen,
Your input helps. Makes me realize that I must be patient.
missmagwumps Nancy_O
Posted
Hi Nancy - I have muscle weakness in my thighs and doc has put i down to side effects of Prednisolone......
I had a knee replacement this last year and my leg muscles were very well looked after by the physio after that...so I know it is a side effect of the steroids...in fact I fell back out of a London cab a while back as my leg suddenly gave way and that was my good leg...lol...x
We can never be sure if our problems are the same but we can only tell our finding for you to check out if you could be suffering the same problem.....if is just a guide or suggestion.....
I wish you luck x