Off label testimonials for Tasigna

[Softballman]

I have been searching though this site and others looking for detailed testimonials on Tasigna off label . unfortunately I’ve only been to locate a few which were helpful. I am currently putting together a document that I can present to doctors when requesting their help with off label program for myself. This paper will include a cover letter about myself, back ground articles on current and past Tasigna trials. Information on nilotinib, testimonials of similar PD individuals and a sample waiver among other items I’m considering that may help. Any ideas or help will be greatly appreciated. Thanks

[Juliegrace]

Unless you have a very progressive doctor I don't believe testimonials (the very few you might find) from PWP will convince your doctor to prescribe nilotnib. If by some chance your doctor is willing, will your insurance company cover it?

[Softballman in reply to Juliegrace]

I don’t believe insurance will cover the cost and I’m aware of the high price of this medication and think if I can source it from Canada for around $50.00 a pill then I’am more than wiling to proceed. I live in S.E Michigan very close to Windsor, Ontario. But your right the doctor part of equation will the hard part. I’ll start with doctors I know and other networking connections. I can only exercise so much and wait for lengthy trials and Government approvals. Any tips you might have I would appreciate it. Thanks

[Xenos in reply to Softballman]

On the internet pharmacies, it's circa 40 USD per 200 mg pill. As far as I understand they do not ask for a prescription. Just say'in...

We all know it's more than difficult to wait, but serious results should be available in 2020.

Take care.

[Softballman in reply to Xenos]

Thanks for reply. I could be wrong but my understanding of online pharmacies even Canadian listed on the search is that 95% of them are less than reliable and may end up spending $40 a pill for corn starch and the reliable ones require prescriptions. If anyone knows of solid valid pharmacy in Canada that will provide me Tasigna with out a prescription I would greatly appreciate it. That would save me a lot of effort. Again thanks for your reply

[MBAnderson]

If you get your hands on some, do you have the other bases covered, i.e., you need an EKG on the 7th day after a dose adjustment and periodically thereafter. If you can get EKGs, you'll need a cardiologist to read them or you have to understand your safety range for QTc values. The margin of safety for prolonging a heartbeat is about 1/10 of a second. Not enough room to dink around with. You need to establish several baselines and then periodic lab work for liver, kidney and a few other things. You cannot consume anything, pharmaceutical or food or supplement that is an inhibitor or competitor of CYP3A4 -- just for starters.

Allow me to elaborate a little bit on this CYP3A4 thing. If you diminish the amount of this enzyme, Nilotinib will accumulate to a lethal level. It's not a matter of if, but when. That means you want to fully appreciate how many different things you put in your mouth and know that every single 1 of them, without exception, has to be examined in the context of CYP3A4. That's no small amount of study.

[MBAnderson in reply to MBAnderson]

PS. The reason it will prove nearly impossible to find a doctor prescribe it because even with her medical degree, experience, and training they realize the drug is too dangerous for them to want to be involved with. You might want to take that to heart.

[Softballman in reply to MBAnderson]

Thanks for your input. My understanding is that most of data out there being used is from leukemia size dose of up to 800mg and not the 200mg dose but I could wrong. I will definitely research your input. Do you have any personal experience with nilotinib ( trials or other wise)? Again thanks

[MBAnderson in reply to Softballman]

I have been a DIY Nilotinib user since November 1, 2016.

Right, all the data pertains to the leukemia dose, but I would not take this drug speculating that consequences are dose-dependent, because nobody knows. There is no data that shows 200 mg is safe. Just because there's a few dozen people taking 200 mg, myself included, does not mean it's safe for everyone.

What you need to know is whether or not you're 1 of those people whose heart is impacted by N. If you are, 100 mg, or even 50 mg, might do it.

The only way you can do this is by having EKGs so frequently that you can find out if your QTc interval is on its way up before it gets much over 460 ms (which, by the way, you could/should learn within the 1st few weeks, if not the 1st week.)

I've gotten away with it because I get my healthcare from the Minneapolis VA and every single doctor I deal with is open-minded, supportive, and do anything I ask, so every single time I go there, which is often, I get an EKG.

[MBAnderson in reply to MBAnderson]

My apology for putting this in such blunt terms, but I do that because I hope you don't pursue this casually. (The manufacturer's insert has 2 black box warnings.)

[Dogmatic377]

I live in Ottawa, Canada and my neighbour either runs or did run (he may be retired now) an on-line pharmacy. I will ask him whether he knows of an on-line that is reliable and fills without a prescription (this might be hard). I will post any info I can find.

I would like to find a Canadian doctor who prescribes off label. Anyone know of one?

Dogmatic377