muscle break down due to pred.

[stephwest]

I've so far suffered two bulging discs in my spine which my physiotherapist has managed to sort out for me. That was all going fine 'till yesterday morning my latisimus dorsi (sp!!) ripped. My physio tells me that this is the result of the steroids and I'd like to know what kind of doses are most people on. I'm taking 10mg a day at the moment and thinking of reducing this to 7.5. I'm in agony at the moment and am only comfortable when lying down on hot water bottles. I have read that this and many other horrors are the side effects of pred. Personally I wish that I'd never touched them. That might be the pain talking.
Thanks,
Steph

[Pete]

Hi Steph,

I'm down to 50 mg pred/day now. I've experienced a bit of muscle loss since disease onset. Also, my skin has thinned, and I bruise very easily. My legs and back are pretty good (I get a chiropractic adjustment once every 3 - 4 months), but my arms and shoulders aren't what they used to be. I weigh about the same now as before I got sick. At disease onset, I lost 20 -25 pounds. Once I was on high dose pred, the appetite kicked in and I regained the lost weight and about 20 extra pounds. I've managed to lose the extra weight, but am still carrying an awful lot of belly fat. I hope that once I get down to 10 - 15 mg pred/day, that I can control my appetite better and build some muscle in my core and upper body.

Best advice I can give is to exercise moderately once your lat has healed. I walk about 3 miles 4 - 5 times a week. It takes me about 55 minutes - a brisk, but not uncomfortable pace for me. Our new Medicare Supplement also will pay for a gym membership. One of my selection criteria is to have a trainer available who has worked with older folks. I want some tips on using weights and upper body exercises to lose a few inches around my middle and regain some degree of upper body strength. I don't want to be ripped like I was in my 20s and 30s. I just want the clothes I wore in my early 60s to fit again!!

Good luck!!

[Geoff]

Hi Steph,

Sorry to hear about your back damage. How long have you been on pred and what kind of doseage? Also did you have a tendancy to any disc issues before you started pred or are you just plain suspicous of the darn stuff!! You are right it can come with many side effects, muscle wastage and ligament damage to name but 2. I have been on the stuff for 5 years and just recently found issues with my fingers, wrists and legs. It hasnt been confirmed its down to the pred but like you I think it is involved.
I have suffered with a bad back for 30 odd years, well before the WG and luckily have a very good physio who can put me back together again. I hope you get some answers soon but from the little bit of info you have posted I am not sure its the pred. All the very best and keep us posted.

[stephwest]

Hi Pete and Geoff. Pete did you say 50mg a day seems awful high how long have you been on it. Geoff I am on 10mg Pred a day for 4 months I started in hospital the 1st week of July on 80mg day after 1 week down to 40mg, then to 20mg after 2 months, then to 10mg 4 weeks ago, how much are you on over 5 years has it been reduced. I was also prescribed Methotrexate 15mg once a week up'ed to 20mg when Pred went down to 20mg from 40mg, I also take daily 5mg folic acid, 75mg asprin and Zoton. when do we get off them for ever, has anybody stopped taking Pred and lasted OK.

[annekat]

Sorry about your back problems, Steph. I'm on about the same amount of pred as you are. I do get some back issues from time to time, just some badly knotted muscles and such, which come and go, but nothing as serious as what you are going through. Others can maybe answer better about the pred, but I do know that you and I are at a point, 10mg. or so, where it would be good to start tapering to 5mg. if we can. I haven't been able to yet, as symptoms increase if I even go down to 8 or 9mg. I'm not sure that fall and winter are a good time to do it, for me, anyway. Most of all, I hope you can soon get some pain relief and healing from the ripped muscle, or I'm assuming it's a muscle, being terminologically challenged. Best wishes for getting through this.

[stephwest]

Hi Anna.
You say symptoms increase if you even go down to 8 or 9mg, what are the exact symptoms?
all best
Stephen

[Pete]

Hi Steph,

I started a flare about three months ago and went back to 60 mg pred from zero. I started tapering 5 mg/wk two weeks ago. Hope to be able to either get off altogether or get to a low (<5 mg) maintenance dose eventually.

[annekat]

Hi Anna.
You say symptoms increase if you even go down to 8 or 9mg, what are the exact symptoms?
all best
Stephen

Oh, nothing out of the ordinary and could be different for different people. For me, it is increased mucus and coughing from that, more blood in mucus, watery eyes, ears maybe a bit more plugged, more fatigue, slight headaches, and a sort of feverish feeling even though my temp does not read high. Another distinct symptom is small red dots on my forearms that come and go and are a sign of disease activity, but can happen just from getting extra run down. Joint pain could creep in, but really hasn't yet. I'm not in bad shape, just not as good as I was during the summer, and some of this may have started before trying to taper the pred. I'm feeling maybe it just wasn't a good time to taper. I had a minor flare last winter, and this is nothing like that, but am thinking it could lead up to that if I try to taper pred too fast. So I'm going slower than my doc suggested, and he gave me permission to set my own pace.

[Savva]

my latisimus dorsi (sp!!) ripped

Sorry to hear that. But maybe I do not quite understand what you mean by "ripped". I am on 12,5 mg pred daily and I think (because no one can tell me, even my doc) I have nerve damage. My legs are hurting when I usually perform some exact moves like standing up from a chair when sitting for a long time. As for side effects - there are hardly any on that dose. At least for me. "Nerve damage" or whatever that is, started this summer for me and I still have it, sometimes more pain, sometimes no pain at all. The only "breakdown" pred does is soften and thinning my skin - I have stretching marks like scars on my hips. As for muscle breakdown - I managed to gain muscle being even on higher dose of pred. Pred is good for exercises, it gives you energy. Reducing it is not a good idea unless you are in a very stable-no-symptoms state.

[annekat]

Savva, I don't know which muscle that is but assume that he means it tore from too much strain, which would cause pain and damage I'd think would heal eventually. I'm not convinced it would have to be the steroids that caused it, but then, I don't know much. Good for you, managing to increase your muscle mass by working out while taking pred. Sorry about the nerve issues, though. Pred can affect different people in different ways. Some are like you, they get lots of energy from it, though I don't imagine many actually gain muscle. I don't feel many side effects, either, at that dosage; I'm now at 10mg. I agree about not reducing it unless you are feeling good and symptom free. I was that way earlier in the year, but now, not so much, so think I'll delay the tapering. I haven't experienced the stretch marks, which surprises me, because I think I have thin skin to begin with. But I know some others on here have had those.