1961mom Posted November 8, 2013 Share Posted November 8, 2013 Methergine, the alternative to methysergide may be in the same boat? http://www.ashp.org/DrugShortages/Current/bulletin.aspx?id=906 This was going to be my next discussion with my neurologist. I recently learned these meds were brought into the market place prior to the current FDA rules & regs. Wondering how much that has played a role in all of this or if it's the newer abortives on the market with a much higher profit center? I know this, I've felt like a normal 52 year old for the entire year! Back pain when I garden, exhausted after keeping my granddaughters for a couple of days and cluster headache free (except during med holiday). I feel nervous, scared, sad and angered by all of this... and not just for myself. For everyone world wide losing this option. > Quote Link to comment Share on other sites More sharing options...
BostonHeadacheDoc Posted November 8, 2013 Share Posted November 8, 2013 Gavis Pharmaceutics is producing Methyergine- Dr Tom Ward, Editor in Chief of the journal Headache has had a conversation with them and all good. So if your phamacy is giving you dumb looks give them that info!! Luong from Abornpharmacy has been working hard to source a location for methysergide. It really is complicated. There are very cheap Chinease sources but he does not trust them at all. So as REALLY the last resort, buying from China (costs less than 3% of the cost from Spectrum) and then send for analysis locally here in US (to outrule powdered cow dung etc)- would be doing it myself if I relied on this med. Sounds like Spectrum MAY supply investigator/research organizations but NOT phamacies or individuals. Their product has the 'USP' standard that is needed for consumption by humans. Out of the box here, but if all else fails, interested parties could er hmm.. incorporate (how about Mushy Labs inc. ) and that corp could easily buy from Spectrum. I did talk to my admin (I am a BU employee) about BU buying some; and it would be a slow and suspicious move for me to do something like that. Not giving up, BostonHeadacheDoc > Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 9, 2013 Share Posted November 9, 2013 Your being involved In is beyond priceless Dr M. [smiley=engel017.gif] Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 10, 2013 Share Posted November 10, 2013 I HAVE FIGURED OUT WHY THEY CALL SANSERT A DIRTY DRUG, Use your imagination. Multiply times 10 Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 10, 2013 Share Posted November 10, 2013 Then double it Quote Link to comment Share on other sites More sharing options...
Brew Posted November 10, 2013 Share Posted November 10, 2013 Sorry. Not following. Quote Link to comment Share on other sites More sharing options...
Platypus Posted November 12, 2013 Author Share Posted November 12, 2013 Spectrum first told Aborn they would sell to them, then told them they would not sell to them because they are a pharmacy, and then told them they (Spectrum) don't have Methysergide after all. But they are advertising it on their website here: http://bit.ly/1bq7MJt So it is hard to tell what is going on with them. With the Chinese chemical suppliers, it's very suspicious, because Methysergide/Sansert/Deseril has never been available as a prescription medicine in the PRC. Speaking of Methergine, how many folks on this thread have tried it? The body metabolizes methysergide to methergine and methergine is thought to be the "active" agent that relieves headache. I tried it 11 years ago w/o success, immediately before trying methysergide. But I have no notes on the dose. Maybe I took too little. BostonHeadacheDoc -- any comments on safe max dose for Methergine or equivalents to Methysergide? Quote Link to comment Share on other sites More sharing options...
1961mom Posted November 12, 2013 Share Posted November 12, 2013 I've never tried the Methergine. I think I'd be willing to give that option a try before I went with either the Chinese or the "Mushy, Inc." option. lol. Knowing all of this was coming down the pipeline, I gave coming off of Sansert a real college try. On Oct. 28th, my new neuro, Dr. Miguel Estavez dx me with occipital neuralgia and gave me a shot of toradol/steroid in the occipital muscles. On day 2 after the shot, I discontinued my 1mg dosage. It worked like magic until last night. It's so weird how I can forget half the stuff my doctor is sharing with me during these appointments. I get so fixated on the single item of hope that's being offered. I do believe he mentioned methergine as an option during the visit, but now it's all a blur. I had such high hopes for the toradol/steroid injection. Especially when I was successfully pain free without the 1mg for 14 days. So the guy in Brazil didn't pan out either? So far, I haven't had a call or an email from Aborn Pharmacy. I did fax my prescription to them about 2 weeks ago. I'm always thrilled when a person takes an interest to the degree this man has for us. It's not that common and I think both he and BostonDoc are champions. Still hanging onto some hope here..... Quote Link to comment Share on other sites More sharing options...
lbh Posted November 12, 2013 Share Posted November 12, 2013 It's my (non medical and non expert) understanding that methysergide metabolizes into methergine in your body. That said, the molecules are different. I believe that methergine works on the same but fewer serotonin receptors than methysergide. Search Wikipedia for both - it has a pretty good description. Methergine was given for migraines I think and is primarily a drug used for vasoconstriction. I'd be interested in knowing if it's effective for clusters. If anybody gives it a try - please post your results. Thanks and good luck to all. Quote Link to comment Share on other sites More sharing options...
Brew Posted November 12, 2013 Share Posted November 12, 2013 Methergine never worked for me. Gave it two months. Nothing. Don't remember the dosage. Quote Link to comment Share on other sites More sharing options...
Platypus Posted November 12, 2013 Author Share Posted November 12, 2013 @1961Mom - BostonHeadacheDoc posted an update on Brazil on page 1 of this thread. Quote Link to comment Share on other sites More sharing options...
Platypus Posted November 17, 2013 Author Share Posted November 17, 2013 Well I have a bottle of Methergine in my hot little hands. Will be crossing over from Sansert over the next few weeks. I would love nothing more in the world than for this to work... -Platy Quote Link to comment Share on other sites More sharing options...
1961mom Posted November 27, 2013 Share Posted November 27, 2013 I do too! Hope it works for you Platy!!!! Quote Link to comment Share on other sites More sharing options...
Platypus Posted November 30, 2013 Author Share Posted November 30, 2013 Methergine not working here. The last two weeks have been hell. I'm down to 4mg/day Sansert which is a sub-therapeutic dose for me. I bumped back up to 6mg yesterday because I am down to one vial of Demerol. I'm hoping my neuro will write me a refill, even though I have blown through a month's supply in two weeks. Today, my 2nd day back at 6mg is the first day I haven't had head-crushing pain in two weeks. But I'll pay when I drop back down to 4mg tomorrow, and then 3mg next week. I'm doing acupuncture w/ this old Chinese acupuncturist, much loved in the bay area and he worked a miracle for my friend's headache's. But no miracle so far for me... Hope you have better luck w/ Methergine #mom. Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 2, 2013 Share Posted December 2, 2013 Makes me sad to read your report Platy. I'm sending my neuro a note to get the methergine and give it a whirl. Is it also a compounded med? I'm burying my head in this enormous sand dune. Feeling very emotional about all of this. Tonight, I'm having a spot of tea as a treatment. I'll give you a shout tomorrow or the next day. Hoping your acupuncturist helps. It's like grasping at straws and spiraling at the same time. Sorry, I usually stick with hopeful. Arggghhhh..... Quote Link to comment Share on other sites More sharing options...
Platypus Posted December 2, 2013 Author Share Posted December 2, 2013 No, Methergine doesn't need to be compounded, it's available in .2mg tablets as is the generic Methylergometrine. 1mg Sansert = .2mg Methergine. You should theoretically be able to swap them pill for pill. Hope it works for you!! Here is one random place on the internet where people are gathered, freaking out over the discontinuation of Methysergide: http://bit.ly/Iz6wsS Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 5, 2013 Share Posted December 5, 2013 Thank you! Quote Link to comment Share on other sites More sharing options...
Brew Posted December 5, 2013 Share Posted December 5, 2013 Methergine is generally given to post-partum mothers to control bleeding. It is a powerful vasoconstrictor. Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 5, 2013 Share Posted December 5, 2013 Well I'm post-partum....even if it's been 23 years! lol How are you managing Platy? Quote Link to comment Share on other sites More sharing options...
Platypus Posted December 5, 2013 Author Share Posted December 5, 2013 Shitty. Hardly leaving the house. In bed most of the time. Quote Link to comment Share on other sites More sharing options...
Jazz Posted December 5, 2013 Share Posted December 5, 2013 Sorry to hear Plat, hang in there (((Hugs))) Quote Link to comment Share on other sites More sharing options...
Platypus Posted December 8, 2013 Author Share Posted December 8, 2013 Thanks Jazz. Quote Link to comment Share on other sites More sharing options...
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