Suggestions for old-dude muscle atrophy?

floydd

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Apr 22, 2016
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I'm 60, with a disease called chronic inflammatory demyelinating polyneuropathy that's basically killed most/all of the nerves in my feet and legs, leading to (among other things) a ton of muscle atrophy. my calf muscles are kaput and my thighs are working their way to the vanishing point too. my feet are shrunken, curved-in messes. the doctors say this is the way the disease progresses and there's nothing to be done for it. yeah, well, that doesn't keep me from trying.

one thing i've done is take up surfing on a paddle board. been doing it for 7 years now and am obsessed. helps with my diminished balance and, i'd guess, with my muscle loss. but not a lot.

i've tried lifting weights but found it depleted strength more than built it. as it is, after surfing for 2 -3 hrs, i generally take to bed for the next five hours.
anyway, this brings me to pills and the stuff you all are talking about here, most of which is new to me. i already alternate adderall and nuvigil, to help with the exhaustion. but this is different, and i just thought i'd ask if there's anything, anything at all, that i should look into that might be of help. maybe stuff that a young guy shouldn't consider but that might work for an oldster. hgh? trt?

the neurologist gives me 4-5 years before even walking will be a problem. all i really care about, however, is surfing, and i'll do whatever it takes to be able to keep on doing that.

thoughts? suggestions?

btw / my regular doctor, knowing my situation, is pretty much happy to prescribe anything i ask for, within limits, of course .....
 
Hey floydd have you considered/talked to your physician about running cycles of plasmapheresis? Recently there was a study on an individual with severe neurologic and cognitive decline resulting from CIDP and after 10 cycles of plasmapheresis the patient (57 years old) showed a near complete recovery of symptoms.
 
CFC: thanks very much for that, i am definitely going to look into it. relatedly, my neurologist recently suggested i give the steroid prednisone a try, in a pulse dosage over six months. he suggested i read up on it, which i did and found very frightening. possible massive weight gain, mood swings, development of something called 'moon face', crumbling of hip bones and so forth. yetch. perhaps anabolic steroids are different. i will research it.
pharmbiak: actually, my doctor also talked to me about plasmapheresis. he kind of steered me away from it, saying that even if it did work, i'd have to keep it up for the rest of my days, with thrice weekly visits to the hospital for the treatment, etc etc. given what you say, i'm going to study it a little more on my own.

i asked him if testosterone replacement therapy or HGH might help. he was unsure and told me to perhaps find a 'men's health' doctor to talk to about it. never knew there was such a specialty. will look into that as well. anyone here know of such a doc on the east coast b/ NY and Boston?

Thanks again.
 
For microglial related demyelination minocycline could help. "A 2007 study reported the impact of the antibiotic minocycline on clinical and magnetic resonance imaging (MRI) outcomes and serum immune molecules in 40 MS patients over 24 months of open-label minocycline treatment. Despite a moderately high pretreatment relapse rate in the patient group prior to treatment (1.3/year pre-enrollment; 1.2/year during a three-month baseline period), no relapses occurred between months 6 and 24 on minocycline. Also, despite significant MRI disease-activity pretreatment (19/40 scans had gadolinium-enhancing activity during a three-month run-in), the only patient with gadolinium-enhancing lesions on MRI at 12 and 24 months was on half-dose minocycline. Levels of interleukin-12 (IL-12), which at high levels might antagonize the proinflammatory IL-12 receptor, were elevated over 18 months of treatment, as were levels of soluble vascular cell adhesion molecule-1 (VCAM-1). The activity of matrix metalloproteinase-9 was decreased by treatment. Clinical and MRI outcomes in this study were supported by systemic immunological changes and call for further investigation of minocycline in MS.[52][53][48][54]"

Sorry if your neuropathy has other pathology not related to microglial destruction of oligodendrocytes and myelination, in that case minocycline might not be as helpful. But it is a generally safe and well tolerated med, so worth trying in my opinion.

I'm really surprised you haven't had a couple rounds of prednisone yet, it is the archetypal immunosuppressant. It can be trialed for short periods, say 1 week or so, without too many side effects besides possibly insomnia and such. Long term is a different story. I wouldn't want to be on it for more than a month. You can pulse it though.

I would try a trial of human growth hormone secretatogues to increase IGF-1 levels and improve nerve function, MK-677 would be my suggestion. It can be found online. There is concern of insulin resistance long term, but one study used it in the elderly (investigating its utility for countering the natural growth hormone decline with aging if I recall correctly) every day for 6 months. Increased IGF-1 promotes growth of all sorts so there is risk of weight gain and cancer as well (though I'm not sure if the latter would be my concern if I were you, maybe if you were trying to live forever). The risk of insulin resistance would be increased should you be using both prednisone and growth hormone secretatogues around the same time, but if you are in good health weight wise and have good blood sugar levels you could probably tolerate a couple months of either prednisone or MK-677, and of course with your doctor in the loop you could monitor things.

I'm most interested in selective androgen receptor modulators for muscle gain - not sure if they'd have similar beneficial effects upon nerve function that AAS might have. LGD-4033 would be my choice. I think with a short period of use like 1-2 weeks there is minimal risk of endogenous testosterone shutdown after the trial. Once again with your doctor in the loop you could measure baseline testosterone and see if there is some degree of shutdown after a 2 week trial. I would keep a selective estrogen receptor modulator on hand for post cycle therapy just in case, it will help kickstart your testosterone production again if you somehow get shutdown after 2 weeks. You could try Armistane but suggestions by others more knowledgeable about post cycle therapy will probably prove more useful.

It's very important to eat a lot of protein throughout the day and plenty of carbs before your workout by way. If you don't eat, your body will eat itself.

I'm of the opinion that when it comes to auto immune disease we just have to find the right immunosuppressants, stacking them if necessary. Minocycline and prednisone would be my choices, I would start the minocycline first and see how it goes, then add in the prednisone after a couple weeks. But I'll have to read about the pathology of CIDP and see if microglia are involved.

Take care, any questions are welcome.
 
CFC: thanks very much for that, i am definitely going to look into it. relatedly, my neurologist recently suggested i give the steroid prednisone a try, in a pulse dosage over six months. he suggested i read up on it, which i did and found very frightening. possible massive weight gain, mood swings, development of something called 'moon face', crumbling of hip bones and so forth. yetch. perhaps anabolic steroids are different. i will research it.

i asked him if testosterone replacement therapy or HGH might help. he was unsure and told me to perhaps find a 'men's health' doctor to talk to about it. never knew there was such a specialty. will look into that as well. anyone here know of such a doc on the east coast b/ NY and Boston?

Thanks again.

Yes, anabolic steroids are very different to glucocorticoids like prednisone - essentially they are sort of 'polar opposites' in their functional outcome on physiology. He was almost certainly suggesting the prednisone to calm inflammation, as Cotcha Yankinov points out above.

Anabolic steroids work in a different way, with none of those classic catabolic side-effects, though they can also modulate the immune system and immune function in sometimes very beneficial ways, but sometimes not, and often dependent on the person. This would all need to be explored with a specialist and may not have relevance for your situation, but they're worth investigating at least.
 
CFC: thanks for the additional info. puts my mind at ease, a little.

Cotcha Y: you write: "I'm really surprised you haven't had a couple rounds of prednisone yet, it is the archetypal immunosuppressant. It can be trialed for short periods, say 1 week or so, without too many side effects besides possibly insomnia and such. Long term is a different story. I wouldn't want to be on it for more than a month. You can pulse it though. "

i think what my doctor would say is that a week-long trial wouldn't be long enough to prove anything. do you disagree?
i read an old post of yours wherein you said to had/have neuropathy. before getting the CIDP diagnosis, peripheral neuropathy was my diagnosis, too. i can't remember what caused the switch. in any event, i think our things are closely enough related that i can learn from your experience, so thanks for your suggestions. do you have thoughts as to dosage and length of trial and what i should be looking for in terms of results?
i'd much prefer to do this stuff under supervision of a doctor but dr's around me, in the tiny state of RI, don't seem to know all that much and, like most doctors, don't often think outside the box. so, i'm going to have to do research on my own.
that said, if a week long trial of predisone isn't going to tell me much, i'm inclined to not even try it. the (possible) side effects sound just too awful.
if you have a good online source for mk-677, feel free to PM me the info.
thanks a bunch.
 
Yes, anabolic steroids are very different to glucocorticoids like prednisone - essentially they are sort of 'polar opposites' in their functional outcome on physiology. He was almost certainly suggesting the prednisone to calm inflammation, as Cotcha Yankinov points out above.

Anabolic steroids work in a different way, with none of those classic catabolic side-effects, though they can also modulate the immune system and immune function in sometimes very beneficial ways, but sometimes not, and often dependent on the person. This would all need to be explored with a specialist and may not have relevance for your situation, but they're worth investigating at least.

I'm very curious about the immunomodulatory effects of AAS (as well as SARMs), is there any literature on this or anecdotal reports of worsening/improvement of auto immune disease or skin conditions like dermatitis?
 
I'm very curious about the immunomodulatory effects of AAS (as well as SARMs), is there any literature on this or anecdotal reports of worsening/improvement of auto immune disease or skin conditions like dermatitis?

There's lots of literature, mostly related to the way androgens modulate cellular vs humoral immunity in HIV patients. That would be a good place to start if you're interested in reading more.

Anecdotally among bodybuilders you hear of both attenuation and antagonisation of immune conditions like psoriasis, probably because of the complex and unique interactions between immunity and gyrating hormonal levels and microbiota.
 
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