Question:
I take the drug Ultram for pain associated with my KD. I have told different people at the past KDA conferences that when I take the medicine I fall less and seem to be able to do more. I notice that when I fall and my legs give out without notice is when I forget to take my Ultram. Also I seem to fall when it wear off at the end of the day. This may seem strange but I am wondering if anyone else has taken this and noticed this.


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Choices:
Yes I take Ultram and I notice the same thing
I take Ultram but no change in falling
I do not take Ultram
I have tried Ultram but it did nothing for me
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I have tried Ultram for pain. I consider Ultram to be a very mild pain medication. I require stronger pain medication in order to relieve the muscle pain, joint pain, and cramps. I alternate between Talwin, and Percocet. I find tha Quinine sulfate, two 325 mg capsules taken at bedtime, help with the cramping, without any side effects. I also receive an injection of Delatestryl (testosterone) 1cc every two weeks, improves strength.

Bob:

Are you still getting the Deltestryl injections and if so, are they still helping you with your strength? Do you know of any over-the-counter testosterone supplements that will do the same thing?

Thanks.

Dan

I think that it is now fairly well understood that testosterone accelerates the damage done by KD. Are not trials now underway that involve a testosterone blocking drug? I would not take it.

Cam:

So if testosterone is not good for you along with steroids, how does this factor in with Androgen sensitivities and their depleted levels? Is there a synthetic testosterone that would mimic without the nasty side effects?

Any ideas Cam...et al?

Dan

Hi Dan I am far from an authority on this; I think the choice is to figure out how to get along with natural or reduced testosterone levels, or take your chances with the effects of KD. I am not aware of a synthetic testosterone drug which will result in the benefits with none of the downside.

Yes, Cam is correct. Doctors/researchers now say that we should stay away from anything that would elevate testosterone levels. A defect in our gene does not allow for the proper cleaning of the garbage that is collected by our androgen receptors when the muscles are used (my terms and I am not a doctor). You can read more about this in several chat room transcripts including Dr. Paul Taylor's chat this fall.

My father refused to take anything, and would fall several times a month. (He didn't know that he had this disease). He lost strength in his legs and arms...but remained mobile (with great difficulty!) until his death.