Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Last year the popular health press was buzzing with research that high testosterone levels weaken the immune system (and vice versa -- low testosterone increases the immune system activity).
An example of this:
http://med.stanford.edu/news/all-news/2013/12/in-men-high-testosterone-can-mean-weakened-immune-response-study-finds.html
I got ACHR + MG in May of 2012 and had a year of prednisone treatment for it. Along the way, I was tested and found to have hypogonadism (very low testosterone levels) and started low dosage testosterone gel treatment along the prednisone which was controlling my MG at about 40 mg/day.
I was at the tapering prednisone stage when I started the testosterone replacement. I ended up tapering until I was completely off of prednisone and mestinon and no MG symptoms returned. Now 18 months later I still remain in remission. So I keep speculating as to any relationship of testosterone levels and MG.
I am still on testosterone replacement. I really don't know if my hypogonadism was a cause of MG, related to MG or totally unrelated. I have read as much as I can find in the literature about MG and don't find other cases of bringing testosterone levels into average connected with MG remission. However, I do find many research accounts of autoimmunity and testosterone being related -- low levels encourage immune system activity.
We normally hear that MG is more common in younger women and older men -- with older meaning late 60s and on. Since these are peak estrogen years for women and declining testosterone years for men hormones could be connected with MG.
So, if you are a male, I suggest you have a testosterone level test. Raising the testosterone level should suppress your immune system, which for MG is actually what we want.
18 months of remission feels to me like maybe I am out of the disease. I continue with testosterone replacement and don't plan to test my hunch that MG would return if I quit. My endocrinologist says that testosterone replacement is the accepted treatment for hypogonadism--so no problems with the prescription being renewed with regular psa and prostate exams.
Having apparently lived many years with low testosterone (something I can tell by my quality of life then and now), and now only at the low end of normal with supplements, I find life is much better -- ambition, strength, etc have returned quite wonderfully. I am 68 and would rather have a few more good years like the last one than a dozen like those 2012 and earlier -- so any warnings about prostate cancer are wasted on me (and those appear to be pointed towards using testosterone in cases where one is not clinically hypogonadic)
Good Luck (we probably should say "May your immune system be suppressed.")
An example of this:
http://med.stanford.edu/news/all-news/2013/12/in-men-high-testosterone-can-mean-weakened-immune-response-study-finds.html
I got ACHR + MG in May of 2012 and had a year of prednisone treatment for it. Along the way, I was tested and found to have hypogonadism (very low testosterone levels) and started low dosage testosterone gel treatment along the prednisone which was controlling my MG at about 40 mg/day.
I was at the tapering prednisone stage when I started the testosterone replacement. I ended up tapering until I was completely off of prednisone and mestinon and no MG symptoms returned. Now 18 months later I still remain in remission. So I keep speculating as to any relationship of testosterone levels and MG.
I am still on testosterone replacement. I really don't know if my hypogonadism was a cause of MG, related to MG or totally unrelated. I have read as much as I can find in the literature about MG and don't find other cases of bringing testosterone levels into average connected with MG remission. However, I do find many research accounts of autoimmunity and testosterone being related -- low levels encourage immune system activity.
We normally hear that MG is more common in younger women and older men -- with older meaning late 60s and on. Since these are peak estrogen years for women and declining testosterone years for men hormones could be connected with MG.
So, if you are a male, I suggest you have a testosterone level test. Raising the testosterone level should suppress your immune system, which for MG is actually what we want.
18 months of remission feels to me like maybe I am out of the disease. I continue with testosterone replacement and don't plan to test my hunch that MG would return if I quit. My endocrinologist says that testosterone replacement is the accepted treatment for hypogonadism--so no problems with the prescription being renewed with regular psa and prostate exams.
Having apparently lived many years with low testosterone (something I can tell by my quality of life then and now), and now only at the low end of normal with supplements, I find life is much better -- ambition, strength, etc have returned quite wonderfully. I am 68 and would rather have a few more good years like the last one than a dozen like those 2012 and earlier -- so any warnings about prostate cancer are wasted on me (and those appear to be pointed towards using testosterone in cases where one is not clinically hypogonadic)
Good Luck (we probably should say "May your immune system be suppressed.")
As we get older (over 30) we start to lose like two percent of testosterone every year afterwards.
The fact that you had hypogonadism as described sounds congenital. Especially If it had been happening for many years. Combine that then with the natural aging process and it kicks in to set it on overdrive.
I haven't seen anything to suggest a true correlation between low testosterone and MG.
However, I have read in a few places that DHEA does help with MG. It needs to be looked into if it hasn't already:
http://www.ncbi.nlm.nih.gov/pubmed/12757262
http://jaha.ahajournals.org/content/2/6/e000272.full (2013)
It appears to me that hypogonadism is much more fraught with health issues than testosterone replacement therapy
some statements from the article:
"A growing body of evidence suggests that men with lower levels of endogenous testosterone are more prone to develop Coronary Artery Disease during their lifetimes"
"There is growing evidence supporting an inverse relationship between the degree of testosterone deficiency and the severity of coronary artery disease." (low testosterone = more severe CAD)
"Existing evidence seems to suggest that lower levels of endogenous testosterone are associated with higher rates of allcause mortality and cardiovascular mortality."
"clinical data from 1031 male veterans in a retrospective observational study. The authors showed that treatment with testosterone in middleaged men with low levels of endogenous testosterone was associated with decreased mortality compared with that in hypogonadal men who did not receive testosterone supplementation."
There are many more correlations with low testosterone and diabetes, obesity, cholesterol, inflammation...
The article continues with adverse effects of testosterone replacement
"This included cases of prostate cancer, which showed no significant difference between the testosterone group and the placebo group."
"Existing evidence seems to suggest that the most commonly encountered adverse event associated with testosterone replacement therapy is an increase in hematocrit, which is considered a known physiologic function of testosterone" (increase in red blood cell numbers).
The article carefully looks at a few studies that showed more heart problems in the testosterone replacement groups. The evaluations list the limitations that question the results.
There is a large study TEAAM going on to find out more about the issue. But in the mean time, the AHA article is reassuring that testosterone replacement in men with hypogonadism is likely better for us than not doing it.