davyg40 Posted March 29, 2011 Share Posted March 29, 2011 Just seen my neurolagist. He has prescribed me dexamethasone 2mg, 1 twice a day for 10 days. anyone know about this as WWW says its potent crap. Thanks to all here who gave their advice as it really helped me thru a difficult time. Having less jabs since having o2 but the o2 is up and down. Thanks again your saints Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted March 29, 2011 Share Posted March 29, 2011 It is a steroid, and in my cluster house, that is a bad, bad word. My son won't go near it. Quote Link to comment Share on other sites More sharing options...
davyg40 Posted March 30, 2011 Author Share Posted March 30, 2011 For what reasons please. Side effects or waste of time, as everyone seems to react differently. Thank you. Quote Link to comment Share on other sites More sharing options...
les genser Posted March 30, 2011 Share Posted March 30, 2011 It is a synthetic glucocorticoid steroid 30 times more powerful than cortisol. It is therefore an antiinflammatory and it has legitimate uses. It is extremely dangerous, can cause suppression of natural immune response, "roid rage", suppressed adrenal function and suppression of the pituitary/adrenal axis. I can find no literature supporting its use in cluster, which makes his prescription totally off label. It seriously messes with the HPA axis, and not in a good way. I'm sorry this response is short but I have no time this AM. Ask your doctor to justify prescribing this. In my opinion the potential dangers far outweigh any feasible benefit (which I don't see at all). It seems a real idiot move to me, and I wouldn't take it. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted March 30, 2011 Share Posted March 30, 2011 For what reasons please In my son's case, steroids cause him to get a steady migraine along with his clusters. The only way we found to get rid of it was DHE, which is administered as an in patient, and following the administration, rebounds. A nightmare he doesn't care to revisit. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 30, 2011 Share Posted March 30, 2011 Davy, another thing about steroids is that they are a known cause of a very unpleasant condition, called avascular necrosis, in which bone dies from lack of blood flow (often in the knees or hips, requiring replacement of those joints). It's not something you have to worry about, probably, from a few uses, but I believe there are people at this site who have experienced it and would attribute it to long-term use of steroids to treat CH. I had it in my knee. Not fun. Quote Link to comment Share on other sites More sharing options...
davyg40 Posted March 31, 2011 Author Share Posted March 31, 2011 Can't wait for that. Along with a buggered back and clusterheadachesbid say I've got some good luck comin . Thanks for the info pal. Quote Link to comment Share on other sites More sharing options...
midwestbeth Posted March 31, 2011 Share Posted March 31, 2011 I do have expereince with this med. I was perscribed twice to break a nasty cronic cycle. While the dexamethasone did break the cycle, the side effects I experienced were not worth the trade off. I will never take that med again! A few side effects I expereinced. * Gained 20 lbs within 30 days * Roid rage. Do not poke the bear who is on this med. * Mainia * I could not smoke or drink enough. Do not go on this med if you had stopped smoking just a month earlier. I started smoking again to prevent homicides. * Oddly enough, any depression I had disappeared completely. Very strange. When I told my Dr this, his response was to put me on a antidrepressant which did nothing. Note: I did not have this same experience the 2nd time I took dexamethasone. * If you are prone to infections, be very careful!! That's all I'm gonna say about that. The above was my experience. YMMV Quote Link to comment Share on other sites More sharing options...
davyg40 Posted April 6, 2011 Author Share Posted April 6, 2011 Thanks for the feedback. Have now come off these tabs as the side effects were horrible. Not good. Top up the verapamil I think. Thanx all. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted April 8, 2011 Share Posted April 8, 2011 Talk to your doctor about getting off of the steroid. That stuff is dangerous to come off of yourself, you need to taper off. It can cause all kinds of problems, including a steroid crisis...where your body STOPS making steroids... Guess what the treatment is? More steroids. Be careful. Mystina Quote Link to comment Share on other sites More sharing options...
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