i live in the uk and i've been taking it for more than 30 years to control my 3-4 migraines a week - just went to get a prescription renewed and i'm told it's no longer available in the uk - at this point in time, all i can see is losing my job and then losing my house and ending up on the streets! does anybody have any information? have tried all other migraine meds and prophylactics but nothing else works for me . . .
Is cafergot being discontinued?
Question posted by lucyglitters on 13 Oct 2012
Last updated on 16 October 2019
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24 Answers Page 2
Hi everyone, I have just starting taking cafergot (it is still available in Indonesia) but I'm a bit concerned by the fact that it's been discontinued in the UK and US. Does anyone know why it was discontinued?
thank you for the replies, i am currently pursuing other options through the migraine clinic in the UK but none are working so far
best wishes to all other sufferers
sally x
You don't know what comfort I have just knowing that others are suffering. I am going through "the change", but am having the first knock-down drag-out migraine I've had for some time. (I already had sinus problems due to springtime here on the east coast). My cafergot prescription had expired and I was absolutely horrified when the pharmacy called and said it is no longer available. I have taken excedrin migraine and what a waste. Many years I ago I tried Imitrex and that "zombiefied" me, and so I've got in a call to my doctor for something to try, but I'm not feeling very encouraged. I feel like road kill and am sick to my stomach. I am a minister and a teacher, and hate to miss work... but I will be praying for all of us that we find some relief!!
I am in the U.S. Our cafergot and ergotamine supply has ended also. Like you, I had tried other migraine meds without getting sufficient help. Finally, I contacted a compounding lab. They will compound any medications that are no longer available from a manufacturer. My doctor provided the prescription; it required about 2 weeks for the lab to receive the caffine needed for the cafergot formula; I now have cafergot in capsule form (instead of pill form). The cost to me was about $1.50 a capsule; I will submit the papers to my health insurance company & we will see how that plays out. I hope this helps you...
Hello fellow migraineurs, since posting my comment I have written to Alliance (the suppliers in UK), Novartis (the manufacturers in UK), also Sandoz head office in Germany. Novartis and Alliance not at all helpful but apologetic. Just explained that it had been discontinued but no suggestion of any being held in stock! Have been on to NICE and Dept of Health, no help there, and found I'm going in circles. I can't order from a USA Compound Pharmacy as they are not allowed to mail outside country because of FDA regulations. Can anybody help with any other suggestions as to where I can obtain the Cafergot Suppositories as I can't take the pills.
EdwinaF
Carol, thank you so much for your info. Could you please give details on how to have cafergot compounded. I am desperate!
First, find a reputable compounding pharmacy in your vicinity. A national drug store chain in the US, Walgreens, also does compounding of meds that are no longer being made commercially. My compounding pharmacy was an independent one. Your doctor or your regular pharmacy should be able to direct you to a compounder. Then you will need a cafergot prescription from your doctor to take to the compounder. Just FYI... my insurance refused to pay any part of this prescription because it had been made by a compounder. Previously, when cafergot and ergotamine were made by Novartis, my insurance covered them. Personally, it is worth the $ for me as nothing else works as well for my headaches. Good luck to you.
Novartis Cafergot 100mg is no longer available in Switzerland, according to my pharmacy and its supplier. Pharmacy also checked in Germany but advised no stocks there. Pharmacist is suggesting Gynergène Caféiné from France, which is chemically equivalent.
Thank you. Please keep us posted on "the French Connection".
I also live in the UK and like you have used cafergot suppositories for @ 30 years. Also like you have tried all other treatments and they don't work like cafergot. I can't swallow tablets and so the suppositories are ideal as they bypass the gut, which is essential with migraines. I had got my medication down to a fine art by just using @ a quarter of the suppository which aborted any attack within 3 hours. I totally understand your feelings about cafergot being discontinued without warning and I am distraught. I have been searching the Internet for any generic replacement, so far without success. If I manage to find anything I will put it on here, meanwhile this week I am writing a very angry letter to Alliance, Novartis and Sandoz Pharmaceuticals.
i am now prescribed imigran - one prescription is 12 tablets and lasts about 4 weeks - one prescription of 30 cafergot suppositories used to last about 6 months as i only used to use half a suppository! imigran is considerably less effective and considerably more expensive!
carol1945: I would suggest contacting a pharmacy in Switzerland and asking them whether they would mail a prescription to you. Your doctor would need to fax the prescription to the pharmacy or possibly you could scan and email the prescription to the pharmacy yourself. You would need to agree with them to pay via credit card, which should be possible. I think you would want to explain the availability situation to them. Also, you might want to get six or twelve months supply at a time. Hope this helps.
How would I order cafergot from Switzerland?
Cafergot 100mg tablets are available in Switzerland under the Novartis label. I have been buying packets of 100 from the local pharmacy and sending them to a relative in the US for about 12 months due to lack of availability there. I checked with local pharmacy last week and they advised that they are still available from their wholesaler. Approx. CHF 45 for 100 tablets.
I am in your same boat.
After a few searches this morning, I believe I will resort to ordering it online, overseas. I have never, EVER, done this before, but the only other relief I can see are many many trips to the ER.
I even visited Sandoz's site, and it isn't even included in their list of drugs anymore! WTH? -I do know that Sandoz merged with another pharma co. to become Novartis over a decade ago already; but apparently Novartis isn't making it either.
With NO prior notification to our doctors, or even our pharmacies, this is a shameful and sinful thing to do to those of us who have used it to ward off our migraines for so many, many, years!
I cannot take any of the newer triptans either because they are contraindicated with my daily use of Paxil!!!
Go figure. Grrrrr...
PS
Sandoz/Novartis ALSO made the generics.
Screwed we are!
Have you tried the generic? Sometimes brand names are discontinued because no one uses them anymore and the company isn't making enough money on it.
Kaismama is right about that!! and the could be the case with you. And I know what you're going through, Migraines are the worst!! I get them too, but I go through cycles with mine, but when I am having a cycle, I can't get out of bed for days they can be very debilitating!! Mine arr more hormone related and once I had my ovaries removed I stopped getting them so often, now I only get them once or twice a year, but some people aren't that fortunate. I wish you luck and hope that things work out for you. :)
Sorry but your proposed solution will not help. Do a few internets searches.
Sandoz/Novartis also made the generic.
It doesn't matter if the same manufacturer makes both, When they discontinue brand, they often are still making the generic. There are other generic manufacturers too. Its worth checking into. The FDA says cafergot brand was discontinued, but that the generics are available.
We're just trying to help you, there is no need to be nasty... I understand that you are frustrated, but getting upset with the people on here who are trying to help you isn't getting you any closer to a solution.
thanks to everyone for your comments - i've called the UK distributor and they still have some in stock so i've asked my pharmacist to get them from there - and apparently novartis have simply stopped making them - i just don't know what to say
i've also made an appointment at the national migraine centre in london and hope that they can come up with something - otherwise, i have no idea what to do
i will try getting them over the internet - i've been taking cafergot for years so i'll know if anything is not working or is causing unexpected side effects
i must say, i think it's outrageous that a drug company can simply choose to stop something that enables people to live a normal life - and i actually work for a pharma company myself
Anna... sorry, but you just came off as being a little nasty, if this wasn't your intention, then please accept my apology !!
I don't see it, so I still have no clue *why* you would think that?
Of course I meant no attitude; good, bad, or otherwise.
I simply answered a question, and offered a suggestion.
There is no generic but a good compounding pharmacy can duplicate Cafergot, although at a higher cost for their efforts.
Related topics
cafergot, migraine, prescription
Further information
- Cafergot uses and safety info
- Cafergot prescribing info & package insert (for Health Professionals)
- Side effects of Cafergot (detailed)
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