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Anyone on Methysergide? (Deseril)

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Post  Catface Fri Feb 01, 2013 3:03 am

I'm 23 years old and I've been on Deseril (Methysergide) Sansert in the US for the last 6 months. I understand this mediation is generally not used commonly as it can cause fibrosis in long-term use but was used on me as a last resort. My neuro-othomogist has just put me on my first months break and I'm really worried about what to expect? I'm wondering if anyone else is on this medication and has passed their 1 month break without needing to return to this medication? Did migraines return, did you go through a withdrawal and how did you feel in general?

I'm also on topamax, 150mg a day and diamox (Acetazolamide) for intracranial hypertension maintainence/ neuro-sarcoidosis stuff.

Catface

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Post  Platypus Thu Apr 04, 2013 4:23 pm

Hi, I've been on Sansert since 2002 when it was available in the US. I now obtain it from the UK via Canada, which is what I assume you are doing.

Sansert's fibrotic side effects are rare -- about 1 in 5000. They do not result from long term use, in fact the newest research indicates that if you are at risk for the effects they will appear early in screenings. These days doctors give MRI's only for the first few years of use, although this will vary from doctor to doctor. (Incidentally, insist on MRI, not catscan for your screenings. Exposure to radiation is a major health risk. And the potential fibrotic side effects are BETTER detected by MRI than catscan, although the old school protocol is catscan and some doctors may order catscan by convention.)

Due to my late reply you've already taken your "drug holiday"; I hope it went ok for you. I can't tolerate them so I don't take them. You can tell your neuro there is support in the literature for skipping drug holidays if not tolerated. See James Lance "Migraines and Other Headaches".

I'm on Topamax as well. I can only tolerate 75mg/day. It turns my brain to oatmeal. tongue

-Platy

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