Has anyone utilized steroids to slow the atrophy process? I've seen only one article recommending Deca-durobolin in muscle-wasting diseases. Human Growth Hormone and some forms of testosterone have also come to my attention as possibilities to work with.

I would love to hear from anyone with experience in this area. Unfortunately I got hold of this information too late to help my father, who died in June from a variation of ALS. He got a lot of applicable information from this site, so I'm hoping that I can develop a database of modalities and information that may be more useful than what was available to him.

Thank you for your input.
Monte Arnold.

Hello Monte,

I am not a physician and therefore I am not really qualified to comment on your question; however, I will give you some pointers to some articles I have read. (All these articles can be found by typing into Google search the titles I will give you below.) I encourage you to discuss those medications with your general physician or neurologist.

Concerning testosterone, everything I have read indicates that increasing testosterone would be very counterproductive for an SBMA patient. In fact, the medication leuprolin, which REDUCES testosterone, has been found to be helpful for SBMA in Japanese studies. See for example: "Pathogenesis-targeting therapeutics for Spinal and Bulbal Muscular Atrophy", Suzuki 2008. This same article also discusses butyrate.

Concerning steroids, there have been many accounts in the newspapers of athletes having horrible side effects after taking them. That's enough to put me off steroids.

You might consider reading up on IGF-1. See for example:
"Overexpression of IGF-1 in Muscle Attenuates Disease in a Mouse Model of Spinal and Bulbar Muscular Atrophy", Palazzolo, 2009; and
"IGF-1 for Kennedy Disease: Treat the Muscle, Help the Neuron" by Richard Robinson.

Good luck, and if you try IGF-1 or anything else, please post your results so we can all learn from you.

This message has been edited. Last edited by: Dan B,

Hello Monte,

I just noticed there is a post on "Steroids" in the "Medications" section of this forum, so you might want to check that.

Correction: I need to correct my earlier posting (two posts above in this thread) where I mentioned the Suzuki 2008 paper and implied that testosterone wasn't helpful.

There is a new paper: "Clinical features of spinal and bulbar muscular atrophy", by Rhodes, Fishbeck, et al., 2009. (As above, this article can be found by typing the title and authors into Google).

The doctors found a positive correlation between total testosterone and strength, walking ability, and performance on the activities of daily living (ADLs) in people with SBMA.

This result is based on naturally-occurring testosterone, not supplements. So I wouldn't consider it an indication that everyone with SBMA should start using supplements.

The 1999 Trial at Ohio State proved that testosterone or steroid injections were harmful. Since the processing of testosterone is the problem with our mutation, more testosterone is bad. Reference the study Dan mentioned, I believe it reflects that the higher the level of testosterone in the patient being studied, the greater the strength. It is in no way a suggestion that we should run out and start having injections. Several members of our SRB have confirmed that when they were guests on our chats.

Is this 1GF-1 as you mention above

Leon, there are several different forms of IGF-1. The one that is being tested in the NIH labs is for muscles. Dosage and frequency have to be determined along with any harmful side effects. Please do not take any medication unless you are under the supervision of a doctor who is familiar with Kennedy's Disease and with any trials that are currently being conducted.

thanks bruce,

Thank you all so much for your responses.
There was one steroid in particular that I had read of that had some positive results, but haven't been able to confirm it. (there are thousands of types of steroids...lots of work to sort that out).
Decadurabolin is the one that was mentioned. It's design is to rebuild in cases of muscle-wasting diseases. I've tried contacting the companies that made it, but no-one knew much there.

I'm doing my best to keep looking for answers, in spite of having lost the person I was doing the research for, although I have to admit I've slowed down a bit. Mostly because it keeps reminding us of our loss.

Getting back on the horse, now, thank you all for your input.

So true, God is the greatest physician.

Monte, I am sorry to hear of your loss. Thank you for your investigation of this. You just never know what might be beneficial.

I receive 1cc of Testosterone Enathate every two weeks. I suggest that you ask your doctor to check your testosterone level when you have your next blood test.

I reached this post referenced from another. And I find it quite interesting.

A few minutes of presentation adds a post in the forum section. In the same said that until now had not developed any neurological symptoms even if Endocrine.

Interestingly, due to having developed endocrine symptoms before neurological, I have several analytical reveal about certain values ​​(testosterone, SHBG ...) and in addition, also growth hormone levels. These analytical in my case used to have peculiarities, testosterone high-normal range and high SHBG and estradiol (which to my knowledge is fairly typical of those affected by SBMA) and even more curious is that my basal levels of growth hormone (without stimulation) always used to be in the upper range of normal.

However, after developing neurological symptoms, my basal growth hormone has plummeted. This house also has provided studies on IGF-1, since most of the IGF-1 circulating in the blood is the product of the stimulation of growth hormone has on the liver.

Has anyone tried the treatment with growth hormone? perhaps it might be interesting for the above, by the favorable studies on IGF-1 and by more than demonstrated neuroprotective role exerted by growth hormone.

Also, it is known that the lack of growth hormone increases expression of 5-alpha-reductase, which as you know, is the enzyme that converts testosterone into DHT, a more potent androgen which binds with greater affinity to very well known androgen receptor.

I do not know what you think, but to contribute ideas that do not stay. Perhaps at some point and if it is finally in my genetic test confirms all suspicions that I actually suffer SBMA, decides to try a treatment of this type.

A hug,

Fer, the initial testing on IGF-1 (for muscles) was positive. NIH is conducting additional tests on animals now. Since potency and the right IGF-1 is important, I would wait on any experimentation until more is known.