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stephwest
11-06-2013, 06:19 AM
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
11-06-2013, 07:13 AM
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
11-06-2013, 07:14 AM
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
11-06-2013, 07:54 AM
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
11-06-2013, 07:58 AM
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
11-06-2013, 08:19 AM
Hi Anna.
You say symptoms increase if you even go down to 8 or 9mg, what are the exact symptoms?
all best
Stephen

Pete
11-06-2013, 09:31 AM
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
11-06-2013, 10:26 AM
Hi Anna.
You say symptoms increase if you even go down to 8 or 9mg, what are the exact symptoms?
all best
StephenOh, 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
11-06-2013, 05:10 PM
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
11-06-2013, 05:42 PM
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.

Wegetarian
11-06-2013, 07:23 PM
I'm currently on 25mg pred (daily) and 25mg of MTX (weekly). I was at the spa for two weeks and did some aerobic exercises of about two hours per day for those two weeks. I did loose weight and feel I'm in much better shape now. I've been going swimming, which seems nice even though I get exhausted way quicker than when I was healthy (can't remember getting exhausted from swimming before, but now my technique is better so it might be more straining).

About pred, at my highest I was taking 80mg / day and man it made me feel horrible. It did get the disease down though. Even though I gained about 10kg in two months I don't really think there are options for being on pred. When I tapered down to 40mg most of the side-effects disappeared. I still have my buffalo-hump and the weight, but hopefully they will disappear too. The weakened eye-sight sucks though.

stephwest
11-06-2013, 07:28 PM
It was an injury from bending over to pick up the dogs water bowl, and the muscles ripped, the pain was incredible. Saw sports injury Prof same day he worked on it with massage, nitrogen spray and ultrasound, that was Monday and I can hardly walk seeing him again today. The point is before GPA I could have picked up light objects from the floor but nowI am scarred to do anything. Googling Pred and muscle weakness brings many pages of info about it. Does anybody else have muscle weakness?
Anna, I got red spots on toes went away after 3 days do you know what it is caused by.
My skin is thin slightest knock brings out big red bruses under the skin I submitted image on earlier post.
Does anybody get off all meds and stay fit?

stephwest
11-06-2013, 07:51 PM
It was an injury from bending over to pick up the dogs water bowl, and the muscles ripped, the pain was incredible. Saw sports injury Prof same day he worked on it with massage, nitrogen spray and ultrasound, that was Monday and I can hardly walk seeing him again today. The point is before GPA I could have picked up light objects from the floor but nowI am scarred to do anything. Googling Pred and muscle weakness brings many pages of info about it. Does anybody else have muscle weakness?
Anna, I got red spots on toes went away after 3 days do you know what it is caused by.
My skin is thin slightest knock brings out big red bruses under the skin I submitted image on earlier post.
Does anybody get off all meds and stay fit?

Savva
11-06-2013, 07:57 PM
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.
Lats are the broadest muscle on the back. It is very unlikely that pred caused pain. I think it is just a strain. It may also be caused by potassium (or magnesium) deficiency caused by pred. Btw do not try to take any supplements containing potassium, magnesium and zinc - they boost your immune system. Just eat healthy.

stephwest
11-06-2013, 07:59 PM
It was an injury from bending over to pick up the dogs water bowl, and the muscles ripped, the pain was incredible. Saw sports injury Prof same day he worked on it with massage, nitrogen spray and ultrasound, that was Monday and I can hardly walk seeing him again today. The point is before GPA I could have picked up light objects from the floor but nowI am scarred to do anything. Googling Pred and muscle weakness brings many pages of info about it. Does anybody else have muscle weakness?
Anna, I got red spots on toes went away after 3 days do you know what it is caused by.
My skin is thin slightest knock brings out big red bruses under the skin I submitted image on earlier post.
Does anybody get off all meds and stay fit?

mishb
11-06-2013, 10:34 PM
My dad used to say - if you want something open, give it to muscles (meaning me).

Now I can't even open doors. I can't turn taps on. I can't open lids on drink bottles. I can't carry shopping bags.
No hand or arm muscles whatsoever.

For me it is more likely a mixture of RA, OA and I think - pred.

However, the bruises on the skin, were also prior to taking pred.

I'm sorry your back is so bad Steph.
I hope the sports injury guy can do something for it - to relieve you from the pain.

annekat
11-07-2013, 04:42 AM
The red dots are something I've heard of from other people, but it's mainly on the forearms and they are very small and disappear after a few days. On the toes sounds unusual, if these are the same red dots, but everyone is different. I can't say what causes them, but it seems to be unusual stress, overdoing it, or a slight increase in disease activity, whether from tapering pred or whatever. I was just communicating with our friend Sangye about these on Twitter and she says they are the same for her, they come and go at odd times and usually when she has been overdoing things a bit. As for the physical mechanism of what causes them, I'm assuming it's something happening in the blood vessels near the surface of the skin, something Wegs related, like the blood not moving through the vessel walls as it should and collecting there briefly. This is not like the purpura rashes that we've seen pics of, and some of us have had, though not I..... this seems much more mild and transitory. For me, there can be as few as two or three dots on a forearm, and it is often just one forearm at a time. I just see it as a little warning to take things easier, eat better, exercise if possible, and avoid stress. For me, exercise usually involves working on my pottery or doing yardwork. That sudden pain of your muscle tearing sounds really awful, and I hope it is able to heal soon so the pain can subside. It does serve to warn me to be careful when bending over or doing other various physical activities.

stephwest
11-07-2013, 06:02 AM
Just got back from Physiotherapist/sports injury guy 2 discs are bulging and a lower back muscle is torn it is agony to move spent last night on upright chair only position to get relief - he said another person at my size (slight) and age 66 should be recovered by now the only other factor is Pred which has he thinks weakened the ligaments and the muscles so the slightest effort is prone to injury which will take weeks/months to recover assuming I don't tear another one. I have got to get rid of Pred only 10mg a day - what will happen if I stop taking them or taper to 5mg then stop. Google Pred, the side effects are a horror story - what is your (all the members) advise. at the moment I can't put my socks on. 6 moths ago I was using a chainsaw to cut lumber I am afraid to pick it up now.

annekat
11-07-2013, 06:46 AM
Your physiotherapy guy could be right about the pred, but looking back in the thread, it looks like you are on the immunosuppressant MTX, too, which could also cause you to heal slower from any injury. Pred is an insidious drug, for sure, though, and though it doesn't seem to cause me a lot of problems, I have to take heed of your experience and be careful.

stephwest
11-07-2013, 05:46 PM
hi anna is the joint pain inflammation in wrists, knees, ankles, knuckles, that is swelling up by the reduction in pred?

annekat
11-08-2013, 02:15 AM
hi anna is the joint pain inflammation in wrists, knees, ankles, knuckles, that is swelling up by the reduction in pred? Yes, these joint pains were happening before I was dx'ed and I found that a small amount of pred would make them go away... I was on no other WG med at the time. They came back a little at the beginning of a flare and disappeared when the pred and MTX were raised. I've read of others on here having joint pains return when they taper pred. It's because the adrenal glands haven't had the chance to get working again after pred has been doing their job for them for a long time. Anyone may go through some return of symptoms while tapering pred, but it may be temporary, as the adrenal glands may start to kick back in. That is the ideal, anyway, and the goal of tapering pred, not only to get off it, but to kick-start the adrenals. Before my dx, my adrenals were probably working, but the joint pain from WG was too much for them to handle, and the steroids were needed in addition, to provide the cortisol that would control the inflammation and pain. At least that is my understanding of it, all of which was gleaned from reading this forum over the last 2.5 years.

stephwest
11-09-2013, 10:59 PM
I went to an acupuncture lady I have known for years yesterday to get relief for lower back pain due to bulging discs and torn muscle, and is trying to reduce inflammation but will take a while, told not to lift even a teapot.
Under medication - no doubt you all google info on pred has anybody seen Is There an Alternative to Prednisone? | Biomedic Labs Rx's Blog (http://biomediclabs.wordpress.com/2011/03/02/is-there-an-alternative-to-prednisone/)
and got any info on it - like do you take it in line with pred or stop pred and start the herbal stuff - does it work? are there any other plant based pred replacments you know of.
I think the pred is damaging my muscles and ligaments and need to replace it if possible. please tell me what you all think. many thanks Stephen.

annekat
11-10-2013, 01:44 AM
I just checked the link and see that the product contains turmeric. I believe I've read on here not to take turmeric because it stimulates the immune system, which may not be ideal for us with our wacky immune systems. I also read on the info sheet for one of my meds that turmeric should be avoided... I think it was CTX, but I'm not sure. However I fairly regularly use curry in cooking, which I believe contains turmeric, and don't worry about it, at the amounts I'm probably getting. And I admit I only looked at the page very briefly and can't give a reason why the product wouldn't do what it says.

I have an herbal blend from a local woman which is called Adrenal Support. The herbs listed on the label in alphabetical order are: Angelica, Basil, Chamomile, Cleavers, Ginger, Mullein, Nettle, and Sage. When I asked her which herb was the most effective in adrenal support, she said probably Cleavers, which is a weed also known as Bedstraw among other things, or a close cousin to it.... google it. I don't take this preparation all the time or expect it to take the place of pred by any means, but it does give me bit of a boost sometimes and I suppose could be beneficial during tapering. This supplier's website is Welcome to our Website (http://www.katesherbs.com), but she is VERY small-time, and last I looked on there, there wasn't much info or any way to order online.... could have changed, though. I imagine there are herbalists in your area who could supply similar things or offer suggestions. The important thing is to avoid things that would stimulate our immune systems; an example of an herb that would do that is echinacea.

stephwest
11-10-2013, 03:55 AM
Hi Anna, Has your Doctor told you not to take turmeric? My Medical Team (ha ha) never warned me off anything food wise.
The crowd that make the herbal stuff claim it to be an alternative to pred and has Curcumin in which is from turmeric. So would you take it alongside pred or instead of it. I have emailed the Lab for more detailed instructions!.
All best
Stephwest

pberggren1
11-10-2013, 05:12 AM
I am pretty sure that turmeric cannot replace pred. Pred is a corticosteroid meaning that it replaces the natural cortisone that your adrenals make.

SpaceflightAddict
11-10-2013, 10:34 AM
Hi Anna, Has your Doctor told you not to take turmeric? My Medical Team (ha ha) never warned me off anything food wise.
The crowd that make the herbal stuff claim it to be an alternative to pred and has Curcumin in which is from turmeric. So would you take it alongside pred or instead of it. I have emailed the Lab for more detailed instructions!.
All best
Stephwest

My doctors told me to never ever ever drink Grapefruit Juice while taking CTX. They also said it interacts with the pain killers and anti-anxiety medications that I was on just after diagnosis. Other than that, I was not warned about any other foods or supplements.

annekat
11-10-2013, 04:52 PM
No, Steph, and Andy, my doc never told me not to take turmeric, or drink grapefruit juice, or anything of a dietary nature whatsoever. The turmeric thing I think I read on here and on the CTX info sheet (2 separate issues, one a unwanted stimulation of the immune system, the other a possible drug interaction). My doc never even told me not to drink alcohol while on MTX, although it says so on the bottle of pills. Actually, I do drink it occasionally, in small amounts, and that has been discussed on here, too. I've never heard of the the grapefruit juice thing with CTX and don't think it says it on the info sheet.

In any case, I agree with Phil and would not consider this turmeric remedy to be any sort of replacement for pred whatsoever. The company that makes it might tell you otherwise, but they have the motive of wanting to sell it. I'm not saying it's all bad, I really don't know. But it would be dangerous to stop your pred and start taking that instead. I'm sorry about your torn muscle and can see why it added to your worry about pred. But I don't think that sort of thing happens very often, and I don't know if you can be sure it was the pred that caused it, or not entirely, anyway. I would just be more careful about how you move, and work with the pred and try to taper it down and get off it in a reasonable amount of time.

mishb
11-10-2013, 06:38 PM
My rheumy told me to never drink Green Tea and also told me to never use a skin cream that also contains Vitamin E.
I have posted these on here, somewhere, before

- nothing about turmeric

stephwest
11-10-2013, 07:28 PM
Hi Anna
I will post any reply I get from Biomedic Labs

Alysia
11-11-2013, 02:01 AM
turmeric can be nice, with chicken and rice :wink1:
not much more then that.

annekat
11-11-2013, 02:10 AM
My rheumy told me to never drink Green Tea and also told me to never use a skin cream that also contains Vitamin E.
I have posted these on here, somewhere, before

- nothing about turmeric Oh, that is weird, and I think I do remember you posting it. I hear so much about the benefits of green tea, including in the book by Susan Blum, MD, mentioned above, which is geared toward anti-inflammatory diet and recovery from AI diseases. I know of a forum member here who told me he drinks a lot of green tea. I'm not saying your rheumy is wrong. I just get confused reading so many conflicting things from different places. It may have been Sangye who warned against turmeric, but I'd have to do some searching to find out.

Barbara N
11-11-2013, 05:20 AM
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!!

I just to reduce my prednisone from 30mg and was feeling pretty good but when I went to get on my horse: my husband has to give me a leg up because my horse is so big. Ususally it is easy, just a little push from him and <i am up. This time I found I had no upper body strength and couldn't even help to pull my self up. I do a lot of exercise and it seems to be getting a bit better every day. My skin is like paper, it rips if you just touch it and it bleeds or leaves a hole and I bruise very easily.My belly is bloated, not like a beer belly but sort of square. I guess I am starting to get the round face fat, moon shape everywhere. I can't wait to stop pred.

TommyG
11-13-2013, 05:22 PM
Ive been on pred for 4 years and was on a high dose for 6 months (40-100mg). My initial weight gain hid my muscle loss. it was a year after diagnosis when RTX finally knocked out my active disease. I was able to shift from just trying to survive to focus on rejuvenation. I joined a gym and found a gentle yoga class.
I was amazed how weak I had become. I saw first hand what pred can do to your muscles. I started slow and still injured myself a couple times. Mostly pulled muscle. I learned to do high reps with lighter weights. 3 years later my muscle tone is back and my strength is up. Most importantly I'm back to enjoying an active life. I'm even back skiing and mountain biking again. Pred does make you much more susceptible to injuries, so start any new exercise program slow.

stephwest
11-13-2013, 06:21 PM
Ive been on pred for 4 years and was on a high dose for 6 months (40-100mg). My initial weight gain hid my muscle loss. it was a year after diagnosis when RTX finally knocked out my active disease. I was able to shift from just trying to survive to focus on rejuvenation. I joined a gym and found a gentle yoga class.
I was amazed how weak I had become. I saw first hand what pred can do to your muscles. I started slow and still injured myself a couple times. Mostly pulled muscle. I learned to do high reps with lighter weights. 3 years later my muscle tone is back and my strength is up. Most importantly I'm back to enjoying an active life. I'm even back skiing and mountain biking again. Pred does make you much more susceptible to injuries, so start any new exercise program slow.

Hi Tommy. thanks for that, what dose of pred are you on now?

TommyG
11-14-2013, 02:06 AM
I'm on 5 mg of pred.