Discontinuation Of Deseril (Page 2)
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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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REPORT

I go to see my neurologist next week I,ll ask him for you, I remember he bought a pallet a year ago from Aus but it was all out of date and the hospital destroyed it.
If you have info regarding the UK share please, more fuel I have more I can possibly find out..

Thanks

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Thanks Robert. That conflicts with other info I've obtained recently. I'm glad somebody told me before I booked a flight. The CHMP issued the final legally binding decision regarding the review of methysergide last year. Their opinion was that the use of the medicine should be restricted. Whether the drug is licensed or unlicensed, its use is authorised in both the UK and Australia. My understanding is that situation isn't going to change. Although it's being manufactured in Australia, it is not being supplied here. Therefore it would need to be imported back into Australia from an overseas supplier. It is, or was, being imported for use in the UK. That's the supplier I was looking for. That is the info I was given by a pharmacist from the TGA (equivalent to your MHRA). I have a feeling the MHRA will give me similar info if I contact them. The government provides various mechanisms to access the drug, but they don't provide info regarding the suppliers. Doctors and pharmacists are suppose to do that.

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Julie Uk doesn't have it im UK

Only Australia has production, my doctor cant get it at the hospital it caused a real issue to 100s of people

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I posted above as Migraine Sufferer, then noticed someone else had used that name earlier, so I changed mine. I can't find a supplier for Deseril, so I can only think of 2 other ways to get it. Go to the UK. Armed with an English prescription I'm good to go. Alternatively, I can incorporate myself, then buy the medication directly from the manufacturer. I'll let you know if I'm successful with that venture.

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Thanks for this ive sent it to my guy in the UK, as I do know they tried to ship some years ago when it was first discontinued but it was all out of date.

see if we cant get more now

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When I posted the above message I included a link to the web page of the manufacturer. The link was removed by the moderator before the message was posted, possibly due to copyright? The company manufacturing methysergide is Sigma-Aldrich, but I haven't found a supplier yet.

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Methysergide is already being manufactured in NSW.

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Some possible good news re Deseril: I saw my neurologist for a review last week. He informed me there is a formal group of headache Doctors (can't remember group name) who are endeavouring to get Deseril made by a different manufacturer. No timeframe or details but good to know something might happen. Note 'might' is the operative word.

Per post #74 I tried Epilem for 3 months, however no effect so stopped. Tried 1/2 strength TCE as a preventive however no material benefit so stopped also. Neurologist recommended against Botox for me. Now trying Lyrica for a 2 month trial, If no benefit will next try Feverfew (no script required) for 2 months.

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Hi. I had my first Botox on 5th December, at last, but no real improvement yet. Maybe migs are not as intense but they are just as frequent. So am going back on 5HTP to get me over Christmas but they are expensive and I need a high dose to be effective (500-600 mg a day). Hey ho!

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Hi it back, well I'm on my second application of botox, and it doesn't seem to work for me this time, first lot seemed to help a little but hard to say really, my view is most of these tend to try stem the pain centres, I think my migraines or headaches are chemical related this methysurgide was the best.

I'm going to see my doctor in January for an update so I,lol report back. I've started taking vitamins in this format
Cod live oil
Vit E
Folate
B12 liquid.

When I was young as always I liked drinking and this may have damaged me in some kind of way, with stripping my body's natural goodness, so I thought why not give it a whirl,

I'll report back soon. I may ask for gabapentin again didn't seem to work for me, but maybe another shot

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I had taken Deseril for 40 years and my father had taken them for nearly 20 years too. We both had atypical migraines. My doctor put me on Gabapentin and it has been the perfect solution. I started on 100 three times daily then worked up to 300 three times daily and that has been my life saver. I had previously been the tryptins route with no success. I hope this helps someone.

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Hi again all. After 2 plus years another series started for me. I am keeping my supply of Deseril (enough for one cycle in the fridge) just in case, but I can report that Varaprimil at 360MG (one 120 in am and 2 120) have greatly minimized the pain. I have had many "starts" but do not experience the building / swelling pain sensation of a true cluster (you all know what I mean..). I have employed O2 at 8 liters per min for 5-10 min at each sensation (some overnight, and some when I awake in the am) and all headaches are gone. I am about 4-5 weeks into this cycle so if history is a good indication, I think I am winding down. My pattern is that weeks 1 and 2 are mild, then weeks 3-5 are when the bombs go off. Weeks 6-7 find decrease in pain and frequency then the beast goes dormant for 12-24 months. If I can get through with Varaprimil only at 360 (am going to ask my Neurologist if I can go to 480 if needed next cycle with one more added at mid day) I will be relieved about future cluster bouts without my trusted Deseril. Hope this gives someone else direction and good luck all.

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Deseril was the only preventative medication that ever worked for me. I had no beneficial effects from Botox.

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I am on the waiting list for Botox - possibly June/July- and will report afterwards. The specialist said that it CAN be a permanent cure after two sessions. They don't really know why this shoiuld be only that in SOME cases it seems to happen. wouldn't that be wondeful?!

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I started botox a few weeks ago, it's various IV site. It's pretty remarkable the difference it makes but is by no means a cure. Australia have made it easier for neurologists to treat with it. After 2 3 month cycles, if it is shown to reduce symptoms overall by 50%, you can keep getting it on Medicare. You have to have tried everything else first to be a candidate. There is no limit to how much can be IV'ed at one time now. Before you got minimum dose and it was increased as time and treatments went on. It's important to mention that it is much stronger a dose than when done cosmetically and it's every 3 months for headaches/migraine, you can hang on for longer but you'd feel it wearing off and have pain returning. Like anything there are side effects. It's chemically changed a lot in the
past few years...

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Hi Julie,

Botox is definitely worth a try. The success rate is not that high, but it's a miracle drug for some people. The treatments can be painful, but you only need to get them every 6 months. Plus -- no side effects.

Best Wishes,

Chance

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I was on Deseril for about 12 years, prior to going on to the medication I was having about 5+ low level migraine per day (not very bad but soul and life destroying non the less - for me anyway). Deseril changed my life - allowing me to have a life really. I have now been off Deseril for about 6 months and suffering like everyone else, my Neurologist put me on a combination of Sandomigran and Tapomax but I am now only on 75mg per day of Tapomax (Sandomigran made me dizzy and unfocussed). Unfortunately it is not working very well due to the fact that I am 41 years old and Tapomax is affecting the pill (that I had been on for 25 years). So now I am having break through bleeding and a lot of hormone mirgraines (the worst kind for me). I can not take Beta Blockers as I am a fainter (also I like exercice etc so don't want to). It sounds like my last course of action is Botox, which is now on the Australian PBS system. Has anyone on the forum had success with Botox migraines? I am interested in hearing anyone's feedback on Botox and whether I should give it a go - my feeling is I probably don't have any choice.

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Hi everyone, please be careful with using cafergot & the like type drugs on a daily basis as my mother in law got into this cycle of daily use & what happens is you end up with rebound headaches, This is when your body wants the medication as it becomes addictive & creates the headache for you to take the tablets/suppositories which ever method you use. My husband has now been without deseril since taken off market in Australia last November. As I have said previously he does take Endep 100mg (antidepressant used for chronic pain) at night prior to bed, and this is working well with only occasional mild headaches controlled with just normal painkillers (ibuprofen). When he first went off the Deseril he suffered terribly but over time that subsided so we are of the opinion it was a withdrawal from Deseril (upon researching - Deseril was LSD based - just a molecule difference). If all else is failing do try the Endep as it is used for many ailments with great effect

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O litio é vendido como Carbonato de Litio(Carbolitiun) e é usado como estabilisador do humor. Encontra-se em comprimidos de 300 mg e 450 mg de liberação prolongada. È a segunda droga de escolha (primeira Verapamil), pela Associação Americana de Cefaleia, para tratamento de Cluster Headache. Seus efeitos colaterais são minimos ; deve ser monitorizada função renal. Junto com o Verapamil,para mim ajuda a diminuir o numero de ataques de dor e sua intensidade. Mas com a Metisergida, na dose de 1,0 mg/dia, a eficiencia era bem melhor. Cheguei a ficar dois anos em remissão; agora tenho crises diretas nos meses de abril a setembro, que corresponde as estações de outono e inverno no Brasil. Abraços.

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Gracias, yo, intentaré tipo en español usando traductor, ¿Cómo se encuentra el litio, que es una especie de antidepressent creo, sí me molestan que interrumpen debido a los beneficios, pero yo también había escuchado esto también. Mi doctor me dijo que cree que pueden empezar de nuevo, pero no tendrán que ser un gran impulso desde el Reino Unido NHS. deja todos mantienen fuera los dedos cruzados. Me pregunto por qué no pueden hacer nada al mismo, mi doctor dijo en realidad no sabían mucho de cómo methysurgide trabajaban, sólo que lo hizo. Buena suerte con la suya. Espero que esto se lee bien a usted

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