Bio: Christopher Grunseich, MD is a clinical research fellow who is working in Dr. Fischbeck’s lab at the NIH (NINDS) on basic science and clinical studies in SBMA. Chris completed his medical school training at SUNY Stony Brook and neurology residency at Georgetown University. He and Angela Kokkinis are completing an exercise study in SBMA and anticipate starting other clinical studies soon.Dr. Grunseich brought us up to date on the Exercise trial as well as two proposed trials that could be started within the next six to twelve months. He also answered several questions related to Kennedy’s Disease,
Something the doctor mentioned was very interesting to me. I have been taking B-100 vitamins for some time. I have also been experiencing increased neuropathy the last few years.
Dr. Grunseich said that those of us living with Kennedy’s Disease should avoid high doses of B-6 because it worsens the neuropathy systems. The normal dosage in a multi-vitamin should be fine.
He also said that we should consider taking additional supplements of B-12 because it is good for the nervous system.
Reference the exercise trial, Dr. Grunseich said, “The exercise study has been going well. They need a few more participants to finish the study. so far the exercises have been tolerated well by all of the participants. we are looking at two different types of exercises. Both types of exercises so far appear to cause no significant harm, and we have not had to stop the study for any participants because they became too weak.” Anyone interested in participating in the trial should contact Angela Kokkinis at this email address: akokkinis@cc.nih.gov .
Also of interest to me was the comment about the liver. “The liver function is something we are exploring since patients have reported to have elevated liver function tests, and this is thought to come mostly from muscle. however, some patients have had liver ultrasounds which show liver fat. It is interesting to us that there may be liver involvement, since the androgen receptor is expressed in the liver and IGF-1 is synthesized in the liver. We do not yet know whether or not the liver changes are harmful or if they are benign.” I will be following this study closely.
I have a question about IGF1. I have chronic hep b long time, and my doctor will start treatment for it. I hold the treatment because i want a have kids but I cannot. I am starting the med soon now that I because I might be diagnosis with KD? Does having Hep B increase the KD effects? If start the hep b treatment, can it slow the HD? I know IGF1 research is done well in mice, when will IGF1 clinical trials for humans starts?
ReplyDeleteYou are asking specific medical questions that need to be directed to a professional. Ref. Hep B and KD, there might not even be an answer to that if no one has been treated for Hep B and KD at the same time.
ReplyDeleteIf you cannot receive answers to your questions on Hep B and KD, let me know and I will ask our Scientific Review Board to see if they have any thoughts. Since they are not treating you, they can only speak on the subject from a clinical level.
Ref. IGF-1 trials, there is no definitive date yet, but we are hoping within the next 6-12 months.