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Platypus

Methysergide / Sansert / Deseril availability

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As you may know, this medicine has become virtually impossible to acquire since the UK manufacturer Alliance Pharmaceuticals discontinued the Deseril branded product in March of this year.

An alternative is to have Methysergide compounded by a compounding pharmacy. But compounding pharmacies are confronted by a world-wide shortage of Methysergide.

Aborn Compound Pharmacy (http://abornpharmacy.com) in San Jose, CA is interested in allying with the user community in finding a source for Methysergide. If a source can be found, Aborn will purchase the chemical in bulk (on the order of 50g) and will offer it by prescription from any licensed US physician. They can ship anywhere in the world.

This thread will serve to monitor progress in obtaining a source for Methysergide.

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What is the cost?  From my research Methysergide is very sensitive to air and once the vial is open you have only about 24 hours before it begins to deteriorate.  Is it a liquid or powder?  I located a source in Boston, MA but the cost is too high (4mg for about $80; delivered overnight).  They are not a compounding pharmacy though, they are a chemical supplier for bio research.  They have about 20 different substances that hit up the necessary receptors (but I wouldn't recommend anyone mess with the research chemicals). 

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Hi Platypus,

Thank you for the post. I just spoke to one of the owners of Abornpharmacy, Luong, and indeed they do have methysergide, and a lot of it. Even if there are problems restocking from manufacturers, he had a delivery of 50g, which will go a long way, as the typical dose is just 1-2mg daily or a little more. Again, not 100% certain he would be able to eventually restock, but that is my opinion. He told me that part of the problem with compounding pharmacies is they are not willing to buy the required size from the raw manufacturers- at a cost of $22K or thereabouts.

I did ask him about honoring an out-of-state physician and he is going to check on that. Note methysergide is not a Schedule 2,3,4,or 5, making it easier. I await his return call. I asked for a ROUGH (would not hold him to it) cost for 100X 1mg pills and he said about $100.  :D

BostonHeadacheDoc  :)

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Thanks for the heads up on this thread BostonDoc!

I sure hope the pharmacy will honor out of state prescriptions.  Anxiously awaiting your follow up phone call results and post. 

Thank you big time!  The day before yesterday felt as though I was given an "expiration date" :( 

I made an appointment with my neurologist for Oct. 28th.  Part of my discussion plan with him was to get his opinion on my options.  Like Platypus, in the past (during the days before it was a compounded medication only) my experience was I could abort a cycle within 30-45 days on 8mg per day. 

This cycle (chronic since May 08) Sansert wasn't an option given to me by my new Neurologist until my 4th year (2012) of being chronic.  I emphatically stood my ground when I found out it could be compounded by saying "You let me know when you think I've suffered enough, k?  You know best.  I know Sansert works.  I know it can be compounded.  You just let me know when you believe I've suffered enough."  I made my point!

I was unable to find a compounder in Oregon, so I ended up having it made in California (different compounder).  The experience was traumatic.  Not kidding!  I ordered as much as I could and decided to take the minimum dosage to achieve being pain free which was 1mg or sometimes 2mgs during higher cycles.   

With the current supply I have :

181 days at 1mg

23 days at 8mgs

That's how I look at it!   :o

Keeping my fingers crossed for a "yes"!!!! 

Thanks again BostonDoc!

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I was given sansert by an angel.... Thank you Cindy

I was totally PF after the very first 1mg capsule. I take 2mg per day.

Just so folks know it works. I KNOW, everything works differently for different people, but I've never had the instant relief from anything. Even mushrooms took 5 doses.

One pill and no more headaches for me. So far anyway. It's been two weeks...

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I KNOW, everything works differently for different people

That is the most 100% true thing that's ever been uttered here.  :D

Case in point: Sansert never helped me at all.

REALLY GLAD to hear how well it's working for y'all right now though, as you continue to seek out long term, non toxic solutions.

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I hate to see that the sansert quit working for you Brew.

How long did you get relief?

Matt, idk about the toxicity but it can't be as bad as verapimil and lithium?..

I will enjoy every minute for now  :)

Dan

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One of the things about Sansert that scared the shit out of me is the fibrosis issue. You have to take a one-month holiday from it every six months or you risk having your kidneys and heart valves turn to gristle.

No matter that it no longer works, Dan - I've been pain free for over a year now thanks to the D3 regimen.

Edited to add: It worked for about two years.

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Sansert was one of the first meds I was given way back in the late 70's... I described it as constantly feeling like the first few minutes of coming on to psychedelics, all the anxiety and uneasiness... but then never the level out and trip. It never did zip for the CH.

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Dan, I've been pf for 1 year.  I did the 30 med holiday in July and had my innards scanned for any signs of fibrosis.  Clean and clear at the moment.  CH returned within 2 days of my med holiday.  I busted and used 02 all month.  I didn't have more than a 2 day run of pain free time during the sansert holiday/bust replacement therapy month.  :(

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As mentioned, I've been on Sansert since 2002. I don't take the drug holidays as I can't tolerate them. I get daily level 10 headaches once I taper down to < 5mg. For 11 years I've been asking my doctors why I'm supposed to take the drug holidays, and I've never gotten a good answer. I was finally vindicated just recently in a consult w/ Dr. Neil Raskin (one of the top HA specialists in the world). He told me, "I don't make my Sansert patients take the drug holidays. There's no scientific evidence supporting them."

The side effect that Brew mentioned is Retroperitoneal fibrosis (RP). It is rare -- I believe the stat is 1 in 3000 Sansert patients contract RP. When you start the medicine your doctor will order annual MRI's to scan for the disorder. If discovered, you must discontinue Sansert. You are considered "safe" after ~3 negative scans, but doctors differ somewhat on this.

I don't get any side effects. Nothing psychedelic. You do need to taper up.

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The latest news, as I think most of you know by now, is that Aborn's source for Methysergide fell through. The supplier was Spectrum Chemicals. Apparently they didn't know upon Aborn's initial inquiry that they were a pharmacy. When they found out, they refused to sell to them. Reason being Spectrum had previously sold the medical side of their business to Letco, and that included a non-compete agreement that prohibits Spectrum from selling to pharmacies, doctors offices or individuals.

Luong, the pharmacist at Aborn has been searching world over for an alternative supplier of Methysergide without success.

In other news, the Australian government just informed its citizens who use Deseril, that it will be discontinued in 30 days. Users are expressing shock and panic.

And in other news, the Brazilian government called Novartis, the patent holder, on the carpet as to shortages of Deserila -- their branded version. Novartis agreed to continue to make Deserila available in Brazil. It is possible Brazil is the last market in the world it can be obtained, so if anyone has any insight into importing pharmaceuticals from Brazil, please step in.

A question: Does CH qualify as a rare disease? If so Novartis could be forced to manufacture a version of Sansert in the US under the 1983 Orphan Drug Law.

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O Crumbs!  :(

I emailed well known research neurologist Marcelo Bigal, who is from Brazil, working in the US, who put me in touch with well known headache neurologist in Brazil Abouch Krymchantowski (I have read his work). He states that although the manufacturers state that the med was not discontinued there is a current problem and not available:- "for a long time we can't find them (other meds as well) and it is probable it will remain like this". That is bad news.

Thank you to Platypus for keeping us informed.

BostonHeadacheDoc >:(

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The supplier was Spectrum Chemicals. Apparently they didn't know upon Aborn's initial inquiry that they were a pharmacy. When they found out, they refused to sell to them. Reason being Spectrum had previously sold the medical side of their business to Letco, and that included a non-compete agreement that prohibits Spectrum from selling to pharmacies, doctors offices or individuals.

So Spectrum Chemicals has it but won't sell it to us.  My question is this--what situation/person/company would make it so they WOULD be able to sell it? 

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Actually, I guess that last question doesn't matter much...Looks like the smallest amount that you can get really is going to cost around $22,000...

I guess it's back to that "tracking down hard to find illegal drugs so that I can have some sort of semblance of a functioning life" thing. 

It's been a rough couple of weeks....

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So Spectrum Chemicals has it but won't sell it to us.  My question is this--what situation/person/company would make it so they WOULD be able to sell it?  

We're exploring that angle. But more recently Spectrum has said they don't have Methysergide at all.

Thanks BostonHeadacheDoc for the Brazil information. That's very disappointing as that was one ray of hope.  :-[

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