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Title: No Sancert Post by Seiji on Mar 18th, 2003, 2:49pm Hello, I am new to this site. I have suffered with CH for the past 12 years. They seem to have started when i had a bad ethmoid sinus infection. Had all the test CT scan EEG lumbar punicture the works. finally went to a nuro doc and he gave me Sancert that is the only thing that has helped me. I have tried just about everything and the only other drug that helps is the new Maxalt given to me by a friend for her migraines. right now i have been free for 3 years and just now starting an other cycle went to the pharmacy and they have a limited amount of Sancert they told me they have quit making it. guess Maxalt will be the next drug i use but i read you can only take 2 doses a day. My headaches last for about a month and a half. then go away for years. wish i could find something that would work for me like Sancert. |
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Title: Re: No Sancert Post by Dave_W on Mar 18th, 2003, 2:55pm Hi Seiji, Sorry to see you here but glad you found us! I, too, used Sansert as part of my mix to prevent the headaches. I was sad to see it go. The old standard routine for preventatives has been verapamil, lithium, sansert, and depakote -- in that order. Prednisone if all those failed. I got by OK this last cycle on verapamil, lithium, and depakote since no sansert.... Maxalt is an abortive med, and the MLT is pretty fast but there are other quick ones including Imitrex nasal sprays and injections. Punch the "medications" and "cluster survey" buttons to the left of this screen and do some reading. Take the info back to your neuro to discuss, he may not be up on the cluster treatments available. Or find one who is. Hope you get some help and have some relief soon! Pain free days!!!! Old Dave |
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Title: Re: No Sancert Post by bilt on Mar 18th, 2003, 3:13pm Hi: I'm new also, but re: sansert, if you have a pharmacist available who can make compounds, not just dispense tablets, have your physician write prescription for DHE. I believe this is Dihydroergotmine. Similar to sansert, but no available in manufactured form. Works wonders for me! Bill |
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Title: Re: No Sancert Post by henry on Mar 18th, 2003, 3:43pm Hi seiji: my cycle just started too. Sansert had helped me before too. Since its cease of production. I had been on verapimil. I am on a pretty low dosage of 180 mg /day. the frequency has gone down to once a week with a very mild degree of pain which i can cope with. For that reason i've been resistant to increase the dosage. Good luck!. henry |
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Title: Re: No Sancert Post by dizzyd on Mar 24th, 2003, 6:20pm Hello to all, I am a chronic clusterhead for 22 years now. Sansert is the only drug that has worked for me that I have been able to tolerate, other than oxygen which I use extensively. I have tried all the rest; verapmil, lithium, prednisone and unfortunately have not gotten the relief many others experience. I am still taking Sansert which I get from the www.myprescription.com, a Canadian pharmacy. It took over a month to get the script but it works so well from me that I am extremely reluctant to give it up and start the search again for another drug that works. Not sure where you are from, I hope it is not Canada, as I would hate to hear that they too are discontinuning production of Sansert. My last hope would be the UK as I understand from other postings that it still is in production over there too. DizzyD |
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Title: Re: No Sancert Post by Hank on Mar 28th, 2003, 10:09am I don't know whether Novartis called any of you before they d/cd Sansert. I for one was left to discover it for myself. DizzyD is right, you can get it from Canada through several sources. My order which has been in process for about 3 weeks has not yet cleared US Customs. So, it is not a quick process. There is one worrysome issue. I have sent several inquries to Novartis USA and Canada, mostly because the way they handled this really pissed me off. I got this note back a couple of days ago from Novartis Canada. Read it carefully because it looks to me like we could go through this problem again, this time in Canada. ==================================== Dear Mr. Mills, In response to your e-mail dated March 3rd, Novartis Pharmaceuticals Canada Inc. still produces a very low volume of Sansert. However, because of the low demand, we cannot assure the long-term availability of this product in Canada. Thank you for your interest in Novartis. Sincerely, Renée Desjardins-Rafter Information Officer, Communications Dept. Novartis Pharmaceuticals Canada Inc. ===================================== It was clear from the onset that profit margins motivated Novartis USA's decision. When I see verbage such as 'very low volume' and 'low demand', it looks to me like the writing is on the wall. I would not be surprised to see Canada follow by culling their offerings to only those that are the most profitable. Knowing what is likely coming down the pike, those who intend to remain on Sansert might consider some kind of collective response, such as finding a pharmacy that would compound for the group. |
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Title: Re: No Sancert Post by dizzyd on Mar 28th, 2003, 5:59pm Hank, I can not believe it. What the hell are they doing?? I am pissed, now I have to start searching again for this damn script AND get full blown clusters AGAIN to find another medicine. I'm in for finding a pharmacy to compound it, I would definitely be a faithful customer. Do you think we could find one?? DizzyD |
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Title: Re: No Sancert Post by cathy on Mar 28th, 2003, 6:05pm Im in the UK will see if I can locate a source for you all will keep you posted... Cathy |
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Title: Re: No Sancert Post by dizzyd on Mar 28th, 2003, 9:28pm Cathy, You will be my hero if you can help me/us!! Thanks so so much for even looking into it!! DizzyD |
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Title: Re: No Sancert Post by traym4 on May 15th, 2003, 2:37am HAVE YOU TRIED METHERGINE????? IT IS SUPPOSED TO BE LIKE SANSERT BUT WITHOUT SO MANY SIDE EFFECTS. |
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