Discontinuation Of Deseril

I have been taking Methysergide (Deseril) for 14 years as a preventative for migraines. It is the ONLY drug which works for me and I am devastated by the news that it has been discontinued. I am keen to try to find a source for some even if it is only to get me over the next 8-9 months when I still have to have three weekly infusions of Herceptin for the treatment of breast cancer. Herceptin gives me more headaches as one of its side effects so I really need my Deserils! Can any one help or if not is anyone in the same boat? Maybe not the Herceptin bit!

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Hi Rufabug,

Sorry to hear about the headaches you've been experiencing lately. While it is true that the manufacturer Novartis withdrew it from the U.S. market after taking over Sandoz, I'm not sure what the case might be regarding it's current availability in other countries as well.

Apparently one of the reasons why it is no longer recommended, was due to an increased risk of retroperitoneal/retropulmonary fibrosis. From what I've read, "retroperitoneal fibrosis is considered to be a rare disorder that occurs when extra fibrous tissue forms in the area behind the stomach and intestines. The excess tissue forms a mass (or masses) that can block the tubes which carry urine from the kidney to the bladder. Doctors don't know why these masses form, but it's most common in people aged 40 - 60, and men are twice as likely to develop the condition as women." Based on that information, I get the sense that Methysergide creates an environment that heavily influences the onset of this otherwise rare condition.

Have you already asking your doctor about any other treatment options that can be used alongside Herceptin?

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Thanks, David, for your message re my comment on the discontinuation od Deseril (Methysergide). I am trying to get to see my neurologist who first prescibed these for me. I have tried on the internet to see if they are available in other countries for sale. But so far ,once you get to the shop bit they all say"Out of stock" or "presently unavailable". I have just enough in stock myself to be able to wean myself off them slowly. I'm due for a break anyway so I'm telling myself this might be permanent! not a good thought. Thanks for explaining about the serious possible side effects.

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I have been taking Sansert / Deseril for more than twenty years. Before that, I was prescribed every other treatment including Immitrex drugs, but nothing worked for my complex confusional migraines. When Sansert was discontinued several years ago in the US, I found Deseril in the UK and was able to get it through Canada with no break in treatment. I am incredibly concerned about being without this daily prophylactic for my severe migraines.

Does anyone know if any other companies in any other countries produce Methysergide or if compounding pharmacies can/will produce it in the US or Canada?

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Hi, I'm in the US and I've been using Methysergide for my migraines for 11 years and it is the only thing that works, I've tried all the other preventatives. The last remaining source was Alliance Pharmaceuticals in the UK (makers of Deseril) and they have discontinued the product. The good news is you can have Methysergide capsules made for you in the dose you take by a compounding pharmacist. The bad news is it is more expensive than Deseril was. Hopefully someone will pick up manufacturing of a brand or better yet a generic version so we can save on cost.

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My husband's nephew, a doctor from Australia, has recently been over here and says that Methysergide is still widely available over there. He has sourced some for me and will mail them to me. No doubt they are expensive but at least I know I can get some to help me over the next few months. Maybe others could try getting hold of some from Australia.

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Hi, I live in Australia and my husband suffers from chronic migraines due to a car accident he had that shattered his eye socket and caused a lot of nerve damage behind his eye. He was taking deseril for about 3 years when he was suddenly struck down with a lung illness. It's called sarcoidosis. It's when immune system cells cluster to form lumps called granulomas and this was happening in his lungs making it hard for him to even breathe. He was taken off deseril and the sarcoidosis was addressed with a year and a half worth of steroids... Anyway so as he wasn't able to take deseril he was taking topomax instead. This was the drug that he used when taking a month break from deseril every 6 months. He never thought it did much especially compared to deseril but now that he's been taking the topomax for the last 2 years he believes it is doing very little to nothing at all. Which is what has brought me here as he now wants to go back on deseril so can somewhat live a life with some normalcy but has been advised not to by lung specialist as the sarcoidosis can return and may not go into remission again but actually get worse. Deseril is available in Australia at the moment but my husbands neurologist believes its a matter of time before it is taken off the market. So my question is are there any other drugs out there of the same calibre that can help. Surely there has to be some sort of replacement drug for deseril. Is there anything else that you have taken before that has helped. I'm pregnant with our first and scared for what is ahead for my husband. I want him to be able to enjoy our child but don't know how he will cope with his migraines :(

Thanks for reading it all if you have gotten this far

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@Worried - Is your husband's neurologist a headache specialist? Not all neurologists are. If he isn't, he should find one who is, preferably the top dog in your area. To answer your question, yes, there are many other headache preventatives besides Deseril and Topamax. Probably the two most effective are Propranolol (and other similar blood pressure medications) and Depakote, but there are lots of others as well. It is a trial and error process of finding what works or at least what helps. Nothing is guaranteed of course. Best of luck.

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@Chance - I'm not sure whether he is a headache specialist... Possibly not..he is however a top dog neurologist in Sydney area but we now live on the Gold Coast and can't just pop in to his office anymore so we confer over emails..I'll look at finding a headache specialist up this way.. Thanks for the information.. I think because the deseril worked so well my husband thinks that nothing else will be as good. He does have high blood pressure and we're sure he will have to go on medication for that as well in the near future so maybe we'll have some luck with those medications. Thank you again you were very helpful :)

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Hi Worried, So sorry to hear about your husband's health problems. As if chronic migraines are not enough to cope with! My understanding is that unfortunately there is no other drug than can compare with Deseril. I used to be given Topomax to take during my month's break but found that they didn't help one jot. So now I just leave those months blank in my calendar and ride it out. But the thought of not being able to go back on them again after going through that time is horrible. I know now that day will come in the near future. I am sure that Australia will follow the rest of the world in stopping them. I'm sorry I can't help in recommending an alternative. It's just a matter of trial and error with the other prophylactic drugs until he finds one that works for him. Maybe the hypertension drugs will do the trick. I do hope so. Rufabug.

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Hi everyone,

This may be helpful to those in the US, particularly in the west.

Compounded Methysergide is available from Aborn Compound Pharmacy in San Jose, CA. A prescription from a California state licensed physician is required to order, and they can ship anywhere in the world.

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Aborn Pharmacy can now accept prescriptions from any licensed physician in the U.S., not just California. This is great news for American Sansert users!

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Will they accept scripts from Australia? They have just out of the blue told us on 1st Nov that they have discontinued Deseril, so sorry can't have it anymore, just like that.
Where does that leave people who CAN NOT function without it. My husband has taken Deseril for over 20 years with no side effects. He is horrified to know in 30 days when his tablets run out his life ends. We are not being dramatic about this, unless you have lived it people do not understand what it is like to suffer constantly with cluster migraines. He can not function normally due to the constant pain, cannot eat due to taking so many painkillers to dull the pain to something like bearable, cannot drive, go anywhere, go in the sun, smells will set him off. WHO wants to live like that? He will not go back to being like that. I read the copy of the letter from the Australian supplier notifying of the discontinuation of Deseril, and their reasoning is: Link Healthcare has worked vigorously with the current manufacturer (AMCo –Amdipharm Mercury Company Limited) to establish a sustainable supply of this important medicinal product. This program has been unsuccessful and Link Healthcare has no alternative but to cease supply of this product. This is not acceptable surely!! They offer H addicts methadone (at least they get offered an alternative), Deseril users get nothing, not impressed. I want my husband to have quality of life and all of the other sufferers as well.

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Hi, I do have more news but most of it is bad. First, apparently earlier posts from Australians predicting that Australia would follow the rest of the world in discontinuing Deseril have proven correct. Some in the US were actually looking to Oz as a source, but the Canadian website I found claiming to source it from Oz told me by phone it was originating in India, and they could no longer fulfill orders.

One country has stood up to Novartis, the pharmaceutical giant that owns the patent on Deseril/Sansert and all other branded versions of Methysergide: Brazil. The Brazilian health ministry demanded that Novartis continue to make Deserila (their branded version of the product) available. Two of the largest cities in the world are in Brazil, and the government purchases a lot of drugs from Novartis. So Novartis agreed to continue to provide Deserila for the Brazilian market. SO if anyone reading this has any insight into importing pharmaceuticals from Brazil, please step in.

In the US we were able to get Methysergide compounded for a while, but world-wide sources for the chemical have dried up, including the one I posted about earlier. So we are just as panicked as you. It is a world health crisis in miniature. We are doing what we can,
even if you don't have cluster headache (I have chronic migraine). Hopefully we will come up with something.....

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@Desperate wife -- Could you possibly see if there is an organization in Oz that represents cluster headache patients, or if there isn't one, that represents headache patients in general and post their details here? We would like to ally with them as well as a similar organization in the UK we have already contacted, and see if we can get the World Health Organization to take some action. Thank you.

-Chance

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I went to have my prescription for Deseril filled today (in Australia) and had no idea it was discontinued. I have been on Deseril for about 14 years and am in shock now. Before Deseril I was taking around 50 painkillers a week and basically had no life. I used pain killers just to get to work and be able to cope with the day but that was about it. I met my husband whilst on Deseril and don't know what to tell him - the woman you married may be gone and replaced by a shell that can't do anything fun ever. I really hope there is some positive development because I'm contemplating worst case scenario. Are there suggestions for who to email to voice our concerns?

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I have been on Deseril for nearly 40 years without any side effects. I have always taken my regular breaks and was due for one before Christmas, looks like it will be a permanent thing. I have just counted my remaining tablets and will use these to wean myself off very, very slowly. I count myself very lucky as I have had the advantage of this drug during the early years of my child rearing and working life as I am now 67 and retired. I feel deeply for younger sufferers.

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I've also been on Deseril for several years and like a lot of others nothing else works. I have been regularly tested for fibroids and so far no problems. If anyone has any success with getting supplies from Aborn would love to hear about it. I also live on the Gold Coast Australia, and my Neurologist is Dr Ether at Southport. I am seeing him shortly but don't have much hope that he can find an alternative. I guess all we sufferers can do is to keep in touch like this and post any positive news or replacement therapys.

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Have any of you tried Methylergometrine (brand name Methergine)? It is still available and is very similar to Methysergide, in fact the body metabolizes Methysergide to Methylergometrine. I tried it w/o success 11 years ago, but don't remember the dose, and it may have been too low. If what I took was equivalent to less than 6mg of Methysergide that's like taking nothing for me. I'm going to try Methergine again and hope for a miracle.

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I too am dependent on Deseril to function and am devastated by the news. I suggest we do all we can to have the decision reversed. Write to your drug company. Write to sites like DR oz to highlight the issue or to your current affairs program even approach your local member of government to complain. We need to be heard not just suffer in silence.

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Thanks for suggestion. Can't find a supplier of Methergine . Novartis Australia doesn't seem to know the product although they seem to be listed as such. Will keep trying and discuss with my specialist.

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Darn - you got me. I thought you where talking about the antidepressant known as trazadone ( Desyrel ).

but as a semisynthetic ergot alkaloid; I would recommend no other replacement :)

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Re: Rab (# 117)

the best replacement for deseril is remeron. The generics for trazadone are all terrible. The closest thing is brand name remeron. it will cause wait gain though.

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Hi, I'm interested in hearing if anyone has found a good replacement for deseril?

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Hi Nickila,
Dealing with TGA made the headaches worse. No luck getting Deseril yet.

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I started a petition regarding this issue. Sign it, it may help:

change.org/p/novartis-world-health-organization-alliance-pharmaceuticals-continue-the-production-of-methysergide-sansert-deseril-for-migraine-sufferers

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I first posted on this thread in June '13. I have struggled ever since to find a suitable alternative to Deserils which was the only thing to work for me. I am still on hormone tablets for the breast cancer in 2012 and they exacerbate my headaches and migraines. I have tried Botox which only reduced them by about 20%. Now my neurologist headache specialist at The Royal Free in London has given me two injections in my scalp called Occipital Nerve Block. This was three weeks ago and so far I haven't had one migraine and only a couple of headaches which responded to OVC painkillers! This I amazing and I wanted to pass on the good news to others. I am told they don't work for all migraine sufferers but they seem to be working for me. They were not at all, painful to have done either but must be done by a specially trained doctor. Hope this helps others.

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Thanks so much Bruce for your response. I have to say not only was I surprised when I discovered my neurologist had prescribed me a medication that had been withdrawn 2 years previously, but I was also incredibly disillusioned. I could understand if the medication had only just been withdrawn, but 2 years later? I have not even bothered to go back to him - obviously he's not a specialist in the area of migraine - once Botox didn't work he suggested the Deseril, and when I relayed the message back to him that it was discontinued he did not even follow up. He made no alternative suggestions, and he certainly had not at any stage made up a list of all the options we could try (we'd only tried 4 different meds prior to Botox, Deseril was to be the 5th). You are fortunate to have a neurologist skilled in migraine prevention. Actually when I think about it, being disillusioned with my neurologist really doesn't cover how I feel, but I don't want to be rude.

Thanks for your advice on Lyrica. My utter disappointment with conventional modern medicine has started me searching for alternatives - I recently had testing through Irlen [aaic.org.au] and found I had a sensitivity to certain colours on the spectrum which aggravate the migraines. This isn't something they tell you, during testing you just try on different lenses and see for yourself if there's any difference - they're not trying to sell you glasses if you don't need them. Anyway, for me there was actually a huge response to two particular colours. So I now have a pair of glasses with coloured lenses which filter out those specific colours that impact on me and surprisingly (to someone like me who has become very cynical lately), they actually do help a lot. I can only describe wearing the glasses as akin to having a cold compress applied inside my skull and directly on to my brain. It's almost like 'calming and cooling' my 'overactive and overheated' brain. Certainly they don't stop all the migraines or headaches, but they have taken away the almost constant nature of them and the pain when I do get a migraine has certainly reduced - and no, they're not even rose-coloured glasses. Anyway, the Irlen glasses have given me some breathing space to consider next steps, which may or may not include trying to find another neurologist. Thanks again.

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Nickila, I'm surprised (to say the least) that an Australian neurologist would prescribe Deseril/methysergide when its withdrawal from the market has been well publicized and should be known to him/her. When I had a migraine review with my neurologist starting in 2012 he said there were some 17 migraine preventatives available. He then put me on a systematic program to try those he considered most likely to work. Deseril was No 3 on the list and worked brilliantly for 10 months until withdrawn. Finally in Dec 2014 on try No 8 Lyrica prescribed and has worked brilliantly - better than Deseril. See my Post 109 for more detail. Good luck.

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Message for Jules (esp ref posts 100 and 101): Did you have any success? I am in Australia and have just (last week in Oct 2015) been given a prescription for Methysergide from my Neurologist and in the process of trying to find a way to get hold of it have started to do what I now see you have already been doing...if that made sense...am I flogging a dead horse???

I've just been on to the TGA and no luck there other than to say it's still legal and not looking to be withdrawn. I contacted Amdipharm (new owners of Link Pharmaceuticals) and was told they have no intention of bringing it back in. So, it's legal but no one sells it or makes it here. I tried asking Headache Australia for their advice but haven't heard back. My Neurologist just shrugged and said, I knew it would be hard to find - he gave me the prescription, should I be expecting him to help me with finding it or not? I feel like he's given me this false hope - he told me that he was 90% sure Deseril would work - been through so many other meds including Botox with no response. I don't know what's worse, being told Deseril will most likely work and then trying it and finding it doesn't work; or being told Deseril will most likely work but then not being able to even find it.....

So, I'm happy to join in with something to try and bring this medication back to Australia if I only knew where to start or go or who to talk to. So much of the info on the internet is old, from 2013, makes it all very confusing... Thanks :-/

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I am delighted to report that my migraines have suddenly stopped. I still have some of my medication left, out of date of course, but having been in the fridge all the time still work perfectly. I understand only too well how wonderful they can be! I was supplementing my supply for the last year by alternating monthly with Cafergot which my local compounding chemist made up in Tugan (Aust) and these worked well.

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