Discontinuation Of Deseril (Page 4) (Top voted first)

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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Where or from who can I find Methylergonovine. I can't seem to find a supplier in Australia. My specialist not helpful, just said it is not useful with Migraine, forget it!

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Already asked about this with my husbands doctor here in Australia, you are right it is only used in obstetrics and only available as an injection. Doctor said NO.
Still researching.

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After finishing my supply of Deserils I was having migraines every day and took to the Internet to try to find something to help. I read about 5HTP which works on Serotonin levels in your brain. It is a herbal supplement usually taken for depression but can be helpful for migraines too as a prophylactic. At first I was sceptical because I have tried all the herbal remedies in the past to no avail. However very good reports were being written online including one by Stephen Fry. So I bought some and started to take them. I started on 400 milligrams a day and found that to be enough. I've not had a migraine since , a week ago! It seems too good to be true and I am so happy about it that wanted to share it with you. I was nervous of trying it because you can't take any of the Triptan drugs while on it. But my desperation was such that I tried it anyway and haven't neede to take a Zomig. I have had a few minor headaches which respond to painkillers and I suppose it is early days to claim a real success. But perhaps if I tried 500 or even 600 mg a day I wouldn't even have any headaches. I would love others on this thread to give them arty and report back. I will let you know if they are still working in a few week's
time . For now they are my miracle giving me life back after the misery of no Deserils.

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Rufabug.. I hope it works out. Please keep us informed as I am approaching my 18-24 month window to enter into a Cluster cycle.

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My partner suffers from migraine which he was taking deralin (propanalol) which helped him control the migraines until he was diagnosed with diabetes. Common side effect of the deralin was to mask the symptoms of hypoglycemia (low blood sugar) than was prescribed deseril which seemed to prevent the migraines but not the vertigo since now it's been discontinued he now on topamax (drug name toprimate) which is classed as an anticonvulsant medication for epilitics but it works better than any other meds. Also you will find anti depressants such as tofranil can also be used for migrane

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Even though I only started taking Deseril a year ago in January 2013, I was and am devastated by its withdrawal from the market in Australia last October. I've suffered from migraines for some 25 years.... typically 15-20 per month. Desiril worked brilliantly and was literally life changing for me as, after starting to take it, I experienced typically 0-2 migraines per month, and then only because I missed taking one. Now I am back to 15-20 migraines per month.

My neurologist has had me trial several other preventatives (Sandomigran, Inderal, Dothiepin and Vitamin B2 (latter in the month off Deseril)) but none had any effect. I am now trying Epilim.... an epilepsy medication.

My understanding for Novartis' withdrawal of Deseril from manufacture is as stated several times - the chance of retroperitineal fibrosis occurring. My neurologist states that he has not seen one case of it in 40 years of prescribing Deseril. So that appears to be a piece of nonsense as justification for removal. The other obvious one is that it is no longer economic to make - not enough profit in it. Well I would gladly pay three times the price for Deseril.

Back in 1997 my neurologist originally prescribed Ergodryl (1mg Ergotamine, 100mg Caffeine, 25mg antihistamine) for treatment of my migraines and that proved highly effective in getting rid of my migraines within 30-60 minutes.... 95% success rate. It was inexpensive at about $23 for 50. Then it was discontinued - probably as no profit in it. So I changed to Cafergot (1mg Ergotamine, 100mg Caffeine) which was equally effective, but more expensive about $35 for 40.... and it too was discontinued! Fortunately I was able to have it compounded, with cost increasing to $75 for 60. Finally my neurologist prescribed an Ergodryl variation with only 15mg antihistamine - called TCE - Tri-Component Ergotamine. Costing $55 for 100 to compound, It too is highly effective in getting rid of my migraines.

BUT Deseril as a preventative works wonders. Bring it back please!

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Bruce, I know someone who is getting Cafergot from the UK by post regularly and it works for her, not as a preventative unfortunately, and she has to take it daily. Could give you the details if interested. Who makes TEC, I might try it after 5HPT. Please keep posted so we can all get better

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Another ergot you can try is DHE. That's what I've been taking since Methysergide went away. I take it as a preventative. You can take the Migranal nasal spray -- 3 sprays every 8 hours, or the IV of DHE45 -- 1mg every 8 hours. It's working pretty well.

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Hi everyone,
Deseril was taken off the market not because it was banned due to the side effects but because of increase risks most doctors weren't prescribing unless everything else failed. The lack of demand meant lack of profit. Unfortunately for all of us we are that minority that has no or minimal relief with other preventative treatment. Anyway, I have never tried Cafergot but I know that a compound chemist in Hamilton NSW called visionary health make it. It's not a preventative, it's for when you already have a migraine. The same compound chemist also contacted the UK, Switzerland, Singapore and others for the active ingredient methysergide with no luck.
I also wanted to say that while there have been no reports known or in public knowledge about fibrosis and other problems from deseril. I had superficial blood clots in my legs for a long as I was on deseril and since I ran out they have slowly gone. It could be a coincidence. My head hurts pretty much all day, sometimes it all seems like too much but I would reconsider going back on it if it became available.

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Hi Guys so after all these views, has anybody been to see their neurologist and been offered a likewise product. Im in the UK and its now discontinued I could tell, it was on its way out, when I was getting dusty boxes. It saddens me as this worked for me 1 migraine in 6 months, I then had a month break then started again, the 2nd time it wasn't as good, maybe duff tablets im unsure.

What alternatives are there ? anybody know

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Rafa this is good news, im going to try some. Its weird because by the looks they Increase the levels in your head, such as Citopram, the anti depressant. Wheer as when you get preventatives like Pizotifen its reduces serotonin.

Ill report back when I try them, did you go straight onto 400MG as I see there 100MG tablets
thanks

Rob

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Hi Rob. I did up my dosage to 500mg a day taking 200 morning and 300 at night. Mostly they are sold in 100mg tabs but I found some online 200 mg which seem good. I am really thrilled with how effective they are and would say they are working as well as the Deserils did for me. Perhaps this is because my migraines are slowly getting better due to my age , 68, and I was able to decrease my dosage of the Deserils to 2 a day from the 6 I was on at one time. That is the only advantage to ageing - migraines do tend to go as you get older. Also I have now finished my treatment for breast cancer so that may be helping too. But I would definitely recommend any sufferer of migraines, whether cluster or other, to give them a try. They are also supposed to raise your mood, help you sleep and help with weight loss! I must say I haven't noticed any of these advantages worse luck but the main reason for taking them is working. I do hope they help you and others too.

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Have you been successful? if so I would appreciate the suppliers details as I suffer migraines & the only relief I got was from Deseril.

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Hi Guys well update from me, 5HTP works WOW, I take 300MG on a night my tummy hurts for about 25mins then im fine, I wake in the morning with such a clear head its unreal. so far out of 12 days ive had 2 headaches but I do have a cold also.

This is the best ive been since desiril was stopped.

I went to see my neurologist and he confirmed that desiril is no-more he said it may come back if somebody decides to produce it, but even my local Hospital imported a pallet from Australia to find it was all out of date.

The alternative is Botox and Fluarazine, but nothing quite like desiril.

For all people who have not tried 5HTP go for it, I was never a believer in herbals after feverfew did nothing for me, but this is wonderful stuff.

Anybody know what the Medical alternative for 5HTP what can the doctor give you that's as good if not better ?

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I suffer from migraine said cluster for a long time; it's been 3 years since I took Déseril, but as the laboratory was taken over by another and decide to stop Déseril. This is difficult for me who had returned to a normal life.

Déseril before, I had the neurologist antidepressants that not suit me very well, at least one episode per week. Only solution for now is to take daily a preparation made by the pharmacy Ergotamine tartrate (0.7 mg) and Caffeine (100gr) suppository in the evening before going to sleep. In the medium term this is not a problem. But crisis is the same requirement except to Ergotamine (2mg)
With this treatment I do not have a crisis and I live a normal life.

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Just an update: Methylergonovine has now kept me completely migraine free for almost 8 months. Still on six pills a day, but cutting back to five to experiment. I can't ever remember going this long without a migraine in 25 years.

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Ean, I did submit a reply to your post soon after yours but somehow it didn't get posted. TCE - Tri component ergotamine - is simply my neurologist's adjustment of Ergodryl (discontinued around 2004). It is 1mg ergotamine, 100 mg Caffeine and 15mg anti-histamine (not 25mg). Like its forerunners Ergodryl and Cafergot, TCE is highly effective for me in treating my migraines immediately each eposide occurs. It is VIP to take 1 immediately with 1 Panadeine, if that doesn't work in 30 minutes take another. If that doesn't work it's too late. This enables me to release at least 95% of my migraines before they take hold. But TCE is NOT a preventive. My neurologist now has me trialling Epilim for 3 months - an epilepsy treatment - as a preventive, however it's not having any effect or benefit But after 25 years of migraines, NOTHING has been as effective as my 10 months on Deseril. Hope that helps.

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Hi Rob. I am so pleased to hear that 5 HTP is working well for you. As far as I know there is no drug equivalent from the doctors. I would love. It if there was as I wouldn't have to buy the tablets . I am now booked in to have Botox on the N HS and am in a quandary as to whether to go ahead with this or stick to the 5 HTP and pay out a lot of money for the foreseeable future. The neurologist botox consultant who I saw at the Royal Free in London said that if it works after two sessions it could possibly get rid of the migraines permanently! It involves 36 injections all over the scalp shoulders and neck so not very pleasant either. I feel lucky to have been offered this new treatment and if permanent would be amazing so I suppose I should go ahead. You have to have at least 15 migraine days a month to be considered for it. As I am retired and not rolling in money I should choose this option over paying out for 5HTP tablets.

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Morning Rafa, so an update from me, the 5HTP is working ok if I take them at night my head feels clearer on a morning but it does seem to be not as good as when I first tried it, I'm now unsure if it was just a lucky 2 weeks or the 5htp, mmmm
. Anyway some good news I found a near on full box of desiril in my house, so I've star,ted them again and everything is lovely yehaaa, but they won't last long maybe a month or two.

Question about your Botox, are you planning to pay then? It's available on the NHS you know, this is how I'm getting it. Otherwise it's 900 for the first lot, the. I think 300 or 600 every 3 months.

If you want to try my guy then please do, his name is Oliver Lily and he's based at the Leeds General Infirmary for th NHS and I also see him privately at The Spire in Leeds Roundhey. He will ask you to fill out 2 months worth of migraine Diary but if your like me and have 15 or more headaches a month then you'll be good to go on the NHS, LGI can also prescribe the German blood pressure tablet flourarazine spelt wrongly I add, LGI import it as uk doctors cannot prescribe it.

I'm looking forward to the Botox Oliver has a permenant member of staff doing the Botox, and said a lot are now doing it.

Still annoys me about desiril.. By the wat Rafa did you always take the 1 mon break and have scans etc when you did the 14 years? Did it work as well for you every time you started again. I found the second time I did desiril it didn't work as well. Weird maybe a bad batch

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Hi Rob. Enjoy your month on the wonderful Deserils! I wonder whether the 5 HTP tabs were not working too well because you wern't taking a high enough dose. I found 300mg to be not enough . Hence I take 200 in the morning and 300mg at night. I even think they are BETTER than Deserils in a way because you can take them continuously - no horrible break. Yes when on the Deserils I did always have the month break, and a scan annually, and really suffered badly in that month. Tried lots of subs but none helped at all. I just planned my activities around that month off and tried to keep my diary free then. The botox is on the NHS I definitely couldn't afford to have it privately. I see the consultant at the Royal Free at the end of May and then will have to wait for an appointment to get it done. So in the meantime I am taking the 5 HTPs and am mighty glad they are around and so effective - just costly for a long term answer.

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