Discontinuation Of Deseril (Page 2)

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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I take the generic form of Deseryl, which is Trazadone as an anti-depressant and to help my sleep problem. Ask your pharmacy if they carry that. There is no news that Trazadone is going to be discontinued. It is the same medication, because I used to take Deseryl before the generic Trazadone came out.

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Deseril has been discontinued, not Deseryl. Completely different medicine. Deseril is for migraine and cluster headache.

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bonjour, je souffre de migraine et je prend du déseryl depuis 15 ans .je suis belge et sans deseryl je ne vis plus.Pouvez-vous me donner des renseignements au sujet de ce que vous prenez et quel sont les résultats au niveau de la douleur

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Trazadone in high dosages is also used to treat migranes. I friend of mine from a while back used to take high doses of it. I am sorry. Since Deseryl was a brand name of Trazadone, I thought it was possible you spelled it wrong. That was really wrong of me, because it is your medication and of course you know how to spell it. I am sorry. If you are left in the lurch, however, ask your Doctor if Trazadone at a high dose is an alternative, please. It just may be. I wish you the very best!

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I first posted back in June. I've been managing since then on a low dose from a stockpile that I fortunately had accumulated . However it is now coming to an end. My neurologist has put me on a waiting list for Botox IV's. He was sceptical about this form of treatment for migraines to start with but has come round because the trials were very successful. This has now been accepted by the N.H.S. in the U.K. but there is a shortage of practitioners hence the waiting list. It may be the Spring of next year before I can get it done and then no guarantee that it will work for me. The future's looking grim for so many of us but at least there is a glimmer of hope for me and for others in the U.K. anyway. Is it available in any other countries? I can't see from these posts which country you are in - just have to guess from what you write!

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@Chance, I apologize for my delay in posting again. I am researching extensively into this debilitating condition, as I am watching my husband's suffering increasing daily. As my husband is unable to work I have work commitments also. I am building quite a folder of info & contacts in my bookmarks. His doctor has prescribed Topomax as an alternative, but the results so far are proving to be negligible, and actually are having negative effects. I have come across a website 'Brisbane Headache Centre' this is an Australian site which has some very interesting info in regards to causes of migraine (upper neck related). I will be contacting them in regards to this as many years ago (a part of the merry go round of countless tests looking for answers), my husband had a neck scan which showed his 2nd & 3rd vertebrae were fused together from birth. He has suffered this debilitating condition since early childhood, although his then doctor dismissed this as a root cause to his migraines. 'Watson Headache Clinic & Institute' are the original practitioners of this treatment, there is a link to there website as well on this page, & it appears there are clinics worldwide. I am continuing searching & am preparing to contact World Health Organization, World Headache Alliance, International Headache Society and European Headache Federation, looking for answers to the discontinuing of Deseril in our countries, but the Pharmaceutical company still supplying to Brazil? Where did you source that info from as I would like to reference within a written request for explaination of the decision to withdraw this drug from people who are in need of it to function normally.

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Hi everyone,

Word from Brazil is they cannot get Methysergide and are not expecting that to change. It really is gone from the world.

Dr. Neil Raskin at UCSF is transitioning his Methysergide patients to
Methergine (generic Methylergometrine or Methylergonovine) which I posted about earlier. The body metabolizes Methysergide to Methergine, so if given in appropriate dosage, it should work as a substitute.

I believe from extensive research that you need to substitute pills 1:1 (i.e. 1mg Methysergide to .2mg Methergine).

So far so good. I've gone from 8mg/day Methysergide to 5mg Methysergide + .6mg Methergine. Next week I will go to 4 pills of each. From past history I should have crushing headaches on only 4mg Methysergide. I will report progress.

Talk to your pharmacist about availability. In addition to Novartis, Methergine is also manufactured by Gavis Pharmaceutics. Also ask about the generic names.

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I too am devastated that Deseril has been discontinued. I have been on it for about 10 years now and like many of you, it is THE ONLY thing that works for me. The injections I take, Dihydergot, have also been discontinued. This means I have no prevention meds and now no meds for attacks. I have placed called to my consultant neurologist and haven't had a return call as yet. I am also in Australia. I hope one of us can find ou about an alternative. If so, can you please post here?

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Hi, I am a Chronic Cluster Headache sufferer, have been for 30 years - I have tried everything, Deseril is/was the only thing that gave me some relieve from 'The Beast', so I am shattered about it being discontinued ! Have been prescribed Sandomigran as a replacement,not helping one bit. My other security blanket is medical oxygen, works about 60% of the time to stop them! or ease the pain.
Going to try a compounding Chemist to see if they can reproduce a Deseril type of substitute, will keep it posted with the results.
I am an Aussie as well.

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I visited my GP about it this week. He said I actually know more about it thatn he does. So he sat there trying to research alternatives and came up with nothing. n the end I asked for a new referral to the neurologist. He charged me $98! for his efforts!

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My migraines started after intracranial hypertension at 19, I'm 24 now and having migraines roughly 5 out of 7 days my quality of life has been poor, with days spent in agony and in a darkened room until my neuro-ophthalmologist prescribed me Deseril - finally I was able to live life but now it's been discontinued I'm devastated!

I've been prescribed Sandomigran as an replacement like John T but will have to wait until 3 - 4 weeks until it's effective to know if it work.

My doctor seems to think a drug company in Australia will pick it up but it won't probably be until sometime.. I'm praying it happens soon!

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Hi everyone, my mother in law is also a sufferer so I asked her to ask the doctor about Methergine when she was there the other day and he told her that Methergine is not available in Australia in tablet form only as an injection. You may like to check with your own doctors. My husband & mother in law have both tried Sandomigran previous to Deseril and it had no effect at all. My husbands doctor put him on Topomax with the Deseril to try to get off the Deseril because his remaining tablets are fast running out. This was a disaster as the Deseril constricts the blood vessels & Topomax widens them, needless to say he was in extreme pain after introducing Topomax for a week and a half, so he has stopped taking those. John I too have approached a compounding chemist here on the Sunshine Coast, Qld only to be told there is no Methylsergide in Aus and IF he could get it overseas it would cost $1000 per gram, then he would need to add more $$ to that cost for the manufacturing & profit, therefore he was reluctant to even purchase it in as the cost of the making of the tablets would be extremely expensive, another dead end. I am keeping on researching, as I said in previous post will be contacting Brisbane Headache Clinic to look at the root cause for the migraines as hubby has had MRI's, CAT scans, allergy tests etc to no avail previously. We need to keep in contact through this & we all may need to start to contact World Health Organisation etc. I am hopeful together we may find a solution for all the sufferers out there.

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I've also been on Deseril for several years. I take my regular breaks from the drug. I went into my pharmacy in Australia today and was informed it is longer available. Without the Deseril I take strong pain killers every three hours and instead of the recommended dosage of two tablets I take 3 or four tablets. I go to bed with a headache and wake up with headache. I have been contact with my Neurologist he is trying to find a good alternative but because I have had a brain injury. He is not sure what drug to try because we went through the trail and error first time when they decided to put my on a prevent medication. Like everyone else I need the medication to function like a normal person.

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Further to my earlier post, my neurologist said don't worry someone else will manufacture it soon if it is needed!. Big help. Had no alternative to offer. Brisbane Migraine centre uses Watson Headache Approach (can look it up on the net), and is only viable if migraine is neck related. They charge like a wounded bull, and you need to visit Brisbane often. There may be alternative therapists.
The drug is off patent years ago, so can't be worth thousands anymore. One of the generic pharmaceutical manufacturers may surely be interested. I am also reliably informed that Link Pharmaceuticals Australia destroyed all their stock (even though I offered to turn up on their door with a suitcase full of money). I will try ringing manufacturers.

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I agree with migraine sufferers post. We can't suffer in silence - If this drug could drum up some publicity and how desperately in need people are for it.. perhaps we can make a difference and help it get picked up quicker!

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I just wanted to let everyone know that the drug was originally banned in the UK due to the serious side effects that can arise from using the drug which involves hardening or fibrosis of major organs. The arguement that it is suggested that if you have a break for a month every six months that these things not happen when on deseril. The decision has now been made in America and Austraila with all other countries to follow. This has obviously been decided by idiots that don't have headaches all day everyday for many reasons. It should be our decision whether we are ok with the risks. We wouldn't be on them if we didn't have a terrible quality life without. Good luck all fellow suffering individuals.

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I went and saw my Neurologist tonight. He said there is no replacement for these drugs which is terrible news. He did suggest I email John Evans through Slade Compounding Pharmacy who is exploring making the medications for people such as us. Both Deseril AND DHE.

We need to ALL email him and ask them to develop this medication. I hope I have all of your support?

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Hi Christine, is slade compounding chemist in Australia? Could you advise email address hope someone helps soon as my husband has started the downward spiral already as he tries to decrease dosage as his tablets are running out.

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Hi, they edited my post so I can't put the email directly on here or the web site address. Just google Slade Compounding Chemist and there is a contact us form. Try addressing it to John Evans. If you are in Melbourne or can get here, get an appointment to see Dr Jacques Joubert. He can come up with a plan while Slade explore if they can make this drug or not. He changed my management plan last night and I think it will work til Deseril and DHE come back at least.

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Hi again everyone,

Don't feel too bad about not being able to get Methergine in Australia. It's not working at all for me as a replacement. I've been having vicious headaches as I taper down on Deseril. I'm now down to 3mg/day.

I also don't think Slade Compounding will have luck finding a source for Methysergide. Aborn Compounding here in the states has already made an exhaustive search, and the chemical is not to be found anywhere in the world. But do keep us informed.

Thanks for the info on Sandomigran. I guess I won't bother with that one.

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