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Topic: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERGOT) (Read 1538 times) |
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sfdaw23
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WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERGOT)
« on: Jan 22nd, 2003, 11:27am » |
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I HAVE BEEN SUCCESSFULLY TREATED WITH A COMBO OF SANSERT AND VERAPAMIL FOR SEVERAL YEARS NOW ONLY TO FIND OUT WHEN I GO TO GET MY SANSERT REFILLED THAT THE COMPANY THAT MAKES IT.... WELL, STOPPED MAKING IT.
SO NOW I AM GETTING THESE AWFULL THINGS AGAIN AND ONLY TO FIND OUT THAT THEY ALSO TOOK CAFFERGOT OFF THE MARKET TOO.
WHAT THE HELL IS GOING ON HERE.. ARE THEY TRYING TO KILL ME... i DONT GET IT... THEY TAKE AWAY THE PREVENTATIVE AND THE ABORTIVE..... WHAT THE F%!#
WHY DID THEY TAKE SANSERT & CAFFERGOT OFF THE MARKET??????
I HAVE TRIED ALMOST EVERYTHING ELSE AND THESE ARE THE ONLY THINGS THAT HAVE WORKED FOR ME. I DON'T KNOW WHAT TO DO.
DOC IS NOW TRYING TOPAMAX. SO FAR, NOT WORKING. IT IS MESSING WITH THE SCHEDULE OF THE CHS SO MAYBE I JUST NEED TO GIVE IT MORE TIME/ MORE DOSE.
AS FAR AS THE TOPAMAX MAKING ME STUPID I AM ALREADY STUPID SO THATS NOT AN ISSUE SO IF IT WORKS I CAN LIVE WITH IT.
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Bob_Johnson
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #1 on: Jan 22nd, 2003, 1:55pm » |
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Looks like this med is being dropped because--I'm guessing here--it's not as profitable as the newer drugs you see discussed here.
As an abortive, suggest you print out this message and take to our doc. I've found it better than the Ergomar which I had used for years.
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1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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ComputerGeek
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #2 on: Jan 22nd, 2003, 2:59pm » |
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Sansert has indeed been discontinued in the US. It is still availibale in the UK under the brand name Deseril.
Pat
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Karla
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #3 on: Jan 22nd, 2003, 3:58pm » |
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Quote:| Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. |
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Thank you so much for sharing this information. I had no idea that Zyprexa could help with clusters. I am on a different antipsychotic for a different disorder. If I need to switch I will ask to be put on Zyprexa vs. any other one and maybe I can kill 2 birds with one stone.
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Karla
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tbp38
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #4 on: Feb 3rd, 2003, 12:53am » |
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don't feel bad, sansert was the only thing that has ever worked for me along with o2 for the last 18 years. i managed to obtain a subtantial amount from the manufacturer at my own expense. there are ways of obtaining it elsewhere, look at other postings on sansert, best wishes,tbp38
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #5 on: Feb 5th, 2003, 9:23am » |
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I'm new to the site, but a 20 year veteran of Chronic CH. I stumbled around with my neurologist for several years before we found a Sansert and Lithium combination. I sound alot like tbh38. It has been my silver bullet. I've been doing pretty well since. And, ya, my pharmacy called me with the same story, 'can't get it any more'. When I checked with Novartis all they would say is that it was a 'business decision'. I'm pretty sure I understand what that means, it wasn't meeting profit expectations.
If you have a few minutes pull up the Novartis web site and look at the stockholder information. This company is making boatloads of money. The industry cries about how much they invest in product development, but in the end they are extremely profitable. That profit is largely based on only a small number of drugs. Much of the industry profits come from the drugs that are new, costly and target issues such as cancer, depression, arthritis and impotence. With the industry's consumer driven marketing (the best is for Viagra, "Hey Bill, did you get a new suit?" where the patient comes in demanding a specific brand name drug, they are rolling in clover.
Sansert doesn't help them in reaching their higher profit goals. With so few CH patients relying on it, its an easy one to ax without public outcry. I mean, who dies of CH, but then that's another story.
I'm curious, if Sansert continues to be available in UK, does that mean that somebody is continuing to make it. If that is so, is it available in Canada?
Any help you can provide is appreciated. My Sansert supply lasts until mid-March. At that point I must return to a previous life, one I don't even want to remember.
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ComputerGeek
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #6 on: Feb 5th, 2003, 7:33pm » |
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Hi Hank,
I made several phone calls to Novartis in New Jersey, Switzerland, and the UK. To make a long story short, Novartis in the UK use to make Deseril (aka Snasert in the US) and then sold the manufatcuring rights to Alliance Pharmaceuticals which is also in the UK. I called them and was told that they have no plans of discontinuing Deseril. As for Canada, when I have time I am going to call Novarits in Canada and see what their plans are for Sansert. If you look on canadian pharmacy websites, Sansert is still listed. When I called the US branch of Novartis they gave me the indication that each country that Novartis is in is treated like a seperate company, making its own decisions that affect only that country.
Pat
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #7 on: Feb 7th, 2003, 9:49am » |
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Pat:
Thanks so much for the information. You have made my day. I'm going to check to see whether the UK version is available in Canada. Of course then there is the question of insurance reimbursement. But one step at a time.
I also will contact a pharmacy in Ann Arbor, Michigan who have indicated their willingness to compound it if they can get approval from Novartis.
Thanks again. Be well.
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jonny
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #8 on: Feb 7th, 2003, 7:00pm » |
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Add Indomethacin suppositories to that list.
Damn things killed a CH in 15-20 mins for me,
I guess sticking things in you ass is not profitable, had some compounded but they were not worth a damn.
....................................jonny
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| « Last Edit: Feb 7th, 2003, 7:02pm by jonny » |
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kissmyglass
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #9 on: Feb 8th, 2003, 2:28am » |
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Whadday take now for your Ch Jonny?...just curious...
Kev C
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deadheadrob
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #10 on: Feb 18th, 2003, 6:18pm » |
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A quick trip to Tiajuana and you can still get fresh sandoz cafergot for about 5 dollars for 32 tab box. check expiration dates and remember bring a valid prescription with you to get back to u.s. In the u.s. Novartis makes cafergot that is not well made. You can also get wigraine from organon which i think is much faster than novartis.
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #11 on: Mar 6th, 2003, 4:16pm » |
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Sansert Update. I found Sansert @ Canadameds.com. Several of the over the boarder pharmacies have it. They require that you file an on-line power of attorney and a health questionnaire. Then you fax in your script from a US doctor. A physician reviews it and, if approved, its filled and charged to your credit card. A shipping fee of about $16.00 per order is charged so they like to do three months at a time. Sansert is a bargain @ $64.00/100. I called BC&BS to see whether they would cover it. "Sure, said the telephone lady." When I thanked her for making the resolution of this problem so easy, she backed off saying they might cover it. My guess is 'no', but I got the forms anyway. Worth a try. If not I'll cough it up.
Canadameds called my home the day after I faxed the script to say it was on the way. Not here yet....
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dizzyd
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #12 on: Mar 6th, 2003, 6:35pm » |
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Hi Hank,
thanks so much for the information. I will definitely give Canadameds a shot and try to get my next script filled!!! I did find a myprescription.com based out of Montreal who accepted my order and my credit card but it took 32 days to get the script shipped.............I could have screamed (matter of fact, I did scream) waiting and waiting to take the meds.........!!!!! Glad to see someone found a better way to get it. I have been waiting and waiting for someone else to post something about getting Sansert now........
Again, thanks for the information!!
DizzyD
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #13 on: Mar 7th, 2003, 8:41am » |
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DizzyD: The Canadameds site indicates an order can take up to 21 days, 7-10 for shipping and the rest for their processing. I got my call that it was on the way only a day or two after faxing. So, it looks like the whole process MAY take 9-12 days... I'll believe it when I see it. Good luck. Let us know how it works out for you.
I have been on Sansert forever and think it might be a good idea to move to something else if I can. I'm starting a two week trial of Depakote today, but want to have the Sansert on-hand if it doesn't work. I've arranged to be gone from work for 2 weeks so I don't knock holes in the office walls or speak unkindly to my patients and staff. Here we go...
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dizzyd
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #14 on: Mar 8th, 2003, 12:40pm » |
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Dear Hank,
wish you luck finding an alternative to Sansert. Let me know if you find something that works. I have yet to find anything hence my desperate attempts to find it from Canada.
I did try depakote, make me so out of it and tired I couldn't even get out of the house...............
Verapamil caused heart irregulaties so they stopped that............
Lithium caused my blood pressure to drop so low that I had to be in-patient..............
And the list goes on and on, the best medicine with the most minimal "daily and nusisance" side effects has been Sansert.............the long term effects are very very scary and even reading the description on the OUCH site is very very scary, but the pain and the clusters I can not deal so as long as I can get Sansert I will stay on it..........
Good luck on getting your script, Post here and let me know how long it took!!
DizzyD
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #15 on: Mar 10th, 2003, 9:05am » |
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DizzyD:
BAM..BAM.........BAM..BAM..BAM. That was yesterday, 5 memorable hits. I'm phasing in on Depakote and not yet fully off Sansert. By Wednesday I'll be off Sansert and at 500 mg Depakote. Can't tell you how much I'm looking forward to the end of this week. I guess I've got this low tolerance for pain, down at the Sissy end of the scale. It just scares the smack out of me. I'm like you, I'll play this game for awhile, but then if I have to I will return to Sansert knowing the risks. I can't live like this for the long term. Til then I'll keep sucking the 02.
PS: This is day seven since my order went in to Canadameds. The package hasn't shown up yet.
Be Well
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dizzyd
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #16 on: Mar 10th, 2003, 2:14pm » |
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Hey Hank,
Hope the end of the comes quickly for you..........and don't be so hard on yourself, the pain of cluster is like none other, terrifying, excrutiating.............none of us can handle it that is why we all take some sort of drug, even if it is oxygen. If people only knew the pain........I broke my ankle 3 years ago and I am telling you except for the first 10 minutes or so (or after surgery) the pain DID NOT EVEN COMPARE to a cluster. Clusters are so complete and uncontrollable, they take over everything!!
Hang in there,
DizzyD
PS
One thing about the Sansert from Canada.....the pills have absolutely no writing on them, different from US scripts. They are the same size, shape and color though so I am hoping they are the same thing. I've been taking them without any problems so far. Please let me know if your pills look the same as US or not so I can know if it is just the way Canada manufactures them. Thanks!!
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #17 on: Mar 10th, 2003, 8:39pm » |
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DizzyD:
Ya, back in Michigan I had this room in the basement where I'd hide with the 02. By the time we got ready to sell the house I had to replace a bunch of the wallboard cause of the fist holes. It had one cement block wall which was easier since I just had to paint over the blood from pounding my fists against it. Somewhere between there and our move to Tennessee I figured out that there is a point at Kip 9-10 where if you can control your response, then things end a whole lot sooner and easier. So the walls here are in pretty good shape.
I'm taking the next two weeks off to get regulated. I'll let you know how it all turns out. Til then I wish for you the end of Boston Winters and many CH free days.
Hank
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dizzyd
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #18 on: Mar 11th, 2003, 4:55pm » |
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Hank,
The best to you too down there in Tennessee!! They say warm weather is coming in this weekend, YAHOO!!
Actually, the Sansert controls my clusters extremely well and I have been doing really really good, first time since mid-January!! Haven't been on the 02 for at least 6 days now and I am very very excited about that, sleeping and everything............hope you get there soon.
By the way, I have not hit any walls or anything but I do UNDERSTAND a kip 9/10.............killers, I have yet to find anything or do anything that will slow down or stop one..........the 02 controls it for a little while but that is it, I usually have to ride out the storm, and when it is finally over I am completely wiped out!!
Take care and think positive thoughts........here's hoping your meds work for you......
DizzyD
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Hank
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #19 on: Mar 24th, 2003, 12:02pm » |
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DizzyD:
I've been out of circulation for the past two weeks. I've washed the Sansert out of my system. The half-life is supposed to be about 10 hours. The process took about 8 days. 4-5 major hits a day with the o2 working only sometimes. I've phased onto Depakote and stayed on Lithium. Once I hit 500 mg things leveled off in about 3 days. Down to 0-1 CH/day. Usually a Kip 2-3. If that's not good enough, just think, with this med I don't have to worry about having seizures. What a bonus!
The greatest problem is that I have a hard time going to sleep at night. Since this Depakote is an extended release form, I think I'm getting a pretty big load when I take it 1X/day at bedtime. I've started to back it around the clock with the intent of settling in about 6 PM if that will work.
Its great to hear that you are doing better! Enjoy the spring, but watch for that retroperitoneal fibrosis. Not good stuff.
Hank
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dizzyd
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #20 on: Mar 24th, 2003, 12:37pm » |
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Hi Hank,
Glad to hear that things have settled down for you, hopefully the Depakote and Lithium have done the trick for you and CONGRATS on being to be able to get off the Sansert AND in finding somethign else that works!!
I have tried both depakote and lithium and unfortunately the side effects were too much too control and I had to come off of them. I am surprised to hear that you can not sleep on the depakote, the biggest problem for me with that drug was STAYING AWAKE!! Funny how everyone responds so differently.
I am definitely doing good, I only take two sansert a day and things seem pretty controlled. I have strong shadows before my next dosage but other than that I have been doing well. I am checked often for the fibrosis so hopefully I will not end up with any long-term problems from the Sansert!! It is a good drug for me so I will use it wisely for as long as I can.
Enjoy the Spring, the weather here has finally taken a turn and it is great to enjoy it without a cluster every day interfering.
Hope all stays well for you and Enjoy all the great pain free moments that you can.
DizzyD
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Seiji
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Re: WHERE ARE ALL MY MEDS GOING?(SANSERT & CAFFERG
« Reply #21 on: Mar 30th, 2003, 1:51am » |
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Sancert maybe off the market here in the usa, but their is an alternate drug it is called Methergine comes in the same little pill 0.2mg/tablet and it does the same as Sansert and it is less than half the price of Sansert.
check it out
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