Discontinuation Of Deseril (Page 6)

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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The current info available on the MHRA website says that methysergide is authorised for use in the UK, but that it has been discontinued due to manufacturing problems , so people import unlicensed methysergide. I think that info is out of date because the website of the manufacturer indicate that they are open for business. In Australia methysergide is registered with the TGA, so it is clearly approved for use. But because there is no supplier here its availability is the same as an unapproved (for marketing) medication. The process to obtain it is to apply to the TGA through the Special Access Scheme. But you need to include the supplier on the application form. Individuals or companies can apply to the TGA to become a supplier. That way you obtain the medication directly from the manufacturer. At this stage I think we can safely assume there are similar mechanisms in the UK. I'm in the process of researching how to supply myself and others. I'm doing that in between almost daily migraines. I'm also the sole carer of my young child with Type 1 diabetes, and so requires a high level of care. The use of candersartan provides me with some relief with the severity and occurrence of migraines. I've tried every other recommended preventative without success. Before Deseril was discontinued I used it in conjunction with the candersartan and was migraine free for 2 months. Think of it like this. If a person in a wheelchair could take a pill and become functional it is only natural that they would try to obtain access to it. I seriously doubt that they would come up against the obstacles that I have. I think I would be treated with more respect and less suspicion if I were trying to import H. All of this fuss because one user in approximately 3000 will suffer the nasty side affect of fibrosis. The development of which can now be monitored with ultrasound. What a thoroughly bizarre situation.

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Sometimes this forum posts my message immediately. Other times it's delayed, while it's being moderated. Sorry Robert, there's more on the way.

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Deseril, from my experience since approximately 1985, was a brand name drug called Deseryl, of which the generic came out called Trazadone. A friend takes it for migraines, but it also helps depression and helps you sleep. I know that because I have taken it since 1986, and Trazadone certainly is still on the market and not being discontinued. I got this month's script last week. Maybe Methesergide is another generic of Deseril/Deseryl, however you spell it. I haven't heard it called by the brand name for at least 10 years. Please talk to your doctor or pharmacist and see what he/she says. The best to you. I hope all works out well for you!

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Deseril and Deseryl are 2 completely different drugs. Deseril (the brand name for methysergide) is a unique chemical; there is no alternative to it. It is the only drug ever released to prevent migraines. That is why often it is the only drug that works to prevent migraines. Sometimes other classes of medication are prescribed 'off-label' to prevent migraines. For example; antidepressants, anticonvulsants and various drugs to lower blood pressure. But thanks anyway Candy for taking the time to reply and try to help.

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I stand corrected, Jules. I wish I wasn't wrong for Rufabug's sake. I hope Rufabug's situation turns out well, and thank you Jules for teaching me the something new that I learned today!

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I was on it till the end of 2012, I noticed my boxes getting dusty, then eventually the pharmacy said they could no longer get it, it was made by Sandoz which funnily enough was 2 miles from me, till the building was pulled down for houses...

I had only 4 mg a day but some people on the books with my doc were,on massive doses, I know the drug it's self is kinda like LSD but only if taken in big doses. Weird maybe I should just look for some acid LOL.

Anyway the first six month of taking it I had 1 mild headache, I then had the normal month break then started again, the second lot didn't work as well...

It maddens me that people like us have such a crap,life with headache migraine, something works and Sod's law they don't make it because it's not profitable... My only cure is imigran but I can't use that as a preventative.. Although I have thought about it..

I'm due into surgeon 16th and Botox on 23rd I'll report back once I've spoken to him...Leeds general infirmary in the UK....

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I took the Déseril for several years; thanks to this forum and my neurologist myself; I now take the Gabapentin.
It's been 10 days and I tolerates this new treatment against migraine with 3 hand day (100mg) I return in a month to the neurologist to make a first assessment.

I also tried the beginning of 2014 a beta blocker Lodixal; drug intended for the heart and effective against migraines for some people. But the treatment did not work for me. Also if you take one or two glasses of wine; you are good to a migraine attack; not with Gabapentin.

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This 3months that I take Gabapentin 500 mg per day, and the result is 80% success rate.
I hope that this year they will start making Déseril, because the only drug effective against chronic migraines! If you hear a laboratory that manufactures, be nice to let us inquire.

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I'm very pleased to report that I've been taking Lyrica as a migraine preventive since early December and have now been migraine free for four months, for the first time in 25+ years. Dosage is 2 per day (1 in am, 1 at night) at 75mg each.
Lyrica (pregabalin) is made by Pfizer. It's used to treat neuropathic pain caused by an abnormality of or damage to the nerves. Also used to control epilepsy… it belongs to a group of anti convulsants and has analgesic effects – hence relieves pain.

Like many others I was devastated by the removal of Deseril from the market as I had been mostly migraine free for nine months. However Lyrica has proved even more effective and I feel generally better as a result. I'm even able to enjoy 2-3 glasses of wine with a meal without a migraine. Whereas pre Lyrica 1 -1 1/2 glasses would mean an almost certain migraine. One thing that has helped is only having to remember to take Lyrica in the morning and night. Whereas with Deseril it was three times per day, so easier to forget a dose.

It has taken three years with my neurologist to trial seven (7) migraine preventatives to finally find an effective 'cure' - and well worth the effort.

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

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

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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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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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