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TOPIC: TAVALISSE HAS GIVEN MY LIFE BACK!

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 1 week ago #67969

  • camperguy65
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Short and sweet folks. I'm chronic ITP for over four years. Tried everything. Had remission once with Rituxin. Other two courses of Rituxin failed me. Recently (September 2019), I got a blood clot in my lower Aorta. A piece broke off went to my knee and nearly caused me a leg amputation. Saved leg with a fasciotomy, and left open. My leg is still healing today. N-Plate nearly killed me. Had an Aortic stent placed by Vascular Dept. of UMBWMC to secure the main clot. Because N-Plate failed, I qualified for the new drug Tavalisse. It took a month at the lowest dosage of 2x100mg per day. Nothing worked for me, except steroids (Dex, Prednisone, etc.) as rescue medication between the failure of other meds. Promacta did nothing for me. IvIg lasted couple weeks each time. I had five of those, and Rituxin worked once for 16 months and failed 2 other courses. N-Plate clotted me with a spike in my platelet count to 967. TAVALISSE has made me like a normal person now! I am averaging 300 platelet count weekly for a month now! No steroids for two months. No other ITP medications. All are a thing of the past. No more trips weekly for N-Plate injections. I can't even believe it's working so well right now for me. The only thing I've not had done is a Splenectomy. Tavalisse is working in my Spleen. Tavalisse is a tier 3 drug right now as where N-Plate and others are tier 2, or tier 1. They will try to get you on lower tears for less $$$, but Tavalisse is working great! N-plate was actually more per month than Tavalisse, which is still salty at nearly $11k per 30 day bottle. My N-Plate insurance receipt showed $18K for three N-Plate injections for the month of August 2019. Knock on wood, I have not had any noticeable side effects from it. It's now a miracle drug for me. I hope it can be for you too. Let me know if anyone else is now moving to Tavalisse, and if it's working for them. I've survived near death from ITP. Tavalisse has rescued me, and given me a normal life so far. Best Wishes To You All!

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TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 5 days ago #67999

  • Hal9000
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Glad to hear camperguy. A response time of a month does seem very long.

From my notes. Some have tried Fostamatinib/Tavalisse in the past with poor results, eg 'mrsb04' and 'jasondema. Other users like 'AnneMarie P' and 'A Clow' have talked about taking it but have not reported any results.

Only you and 'sachmo16' have reported success. Cheers to Tavalisse !

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TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 5 days ago #68000

  • camperguy65
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Hal, I doubt most have ever been able to try it. It's new, plus all other options are required to fail at least with my insurance, before they'd pay to try it. At first, it seemed like it wasn't doing anything, but my Dr, said be patient, and when I began my second 30-day bottle , it began. So far on my 2nd bottle I've averaged 300. Most don't know about it yet, and/or they can not get it yet if they are getting by on something of a lower tier drug. "Tier" is a term the insurance companies use to determine what they'll pay for having tried lower tier drugs first. At least, Medicare certainly does this. The'y choose the oldest, lowest cost meds first before they will pay more for a newer, more expensive drug, etc. It also has to do with how long, and how tested the drug has been ,and how long it's been around to prove itself, etc. I think as time goes on, we'll see more people having tried it. It's just so new right now. It's not the first choice for insurance companies and Drs. to pick, etc. It's the only oral solution that has worked for me, besides steroids.

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 4 weeks ago #68044

  • cedrap
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I'm about to start Tavalisse so this gives me hope!
The following user(s) said Thank You: camperguy65

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 3 weeks ago #68071

  • Hal9000
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Camperguy, be aware that only 18% of the general ITP population respond to Tavalisse.
pdsa.org/itp-news/item/1633-fostamatinib-itp-treatment.html

My own opinion that another 5 or so percent more would respond to Tavalisse if they also take either Promacta or Nplate along with Tavalisse - because two ITP antibodies can be at work, and not just one. This is what happened with someone I know through PDSA. Both drugs were needed as the highest Nplate dose wasn't enough. Also. When user jasondema tried it here on the forum, I tried to get him to convince his doctor to add Nplate treatments too, but was unsuccessful.

Yes, for all those that respond to the drug, it is like a miracle drug. When Promacta and Nplate don't work, that is life devastating.

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 3 weeks ago #68077

  • camperguy65
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Flawed statistics. I doubt 18% of the "ITP population" has even tried Tavalisse. Very few including the doctors even know it exists. It's only been out for just over a year. Who called all the ITP population or collected all their medical records to show they all tried it, and only 18% it worked? Another thing is that you don't know what you're talking about. N-Plate, Promacta, nor Tavalise have anything to do with antibodies. Tavalisse is a "SKY" inhibitor in the spleen not anything to do directly with antibodies. It's not an antibody. N-plate and Promacta boost platelet birth (production) in the bone marrow. They do not provide antibodies or have anything to do with antibodies. However, IvIg does provide antibodies all different from 1,000s of donors. That's why it's so expensive, and always in short supply. Tavalisse was invented for those that N-plate and Promacta has failed, actually. Promacta did nothing for me, N-plate was all that worked. IvIg always works for anyone, but prohibitive as long-term solution. Rituxin worked only once for me, then no response other two times. Tavalisse did not show any response in me either for a month, then it began working. My guess is that those who've even tried it (which is few), should have waited at least one month before abandoning it if they even got to try it. It's never mentioned hardly ever on here, or on the main FB group, so I know first hand with some common sense that the majority of the ITP population has not ever tried it, let alone saying only 18% responded. 18% of some group is not 18% of the "ITP population". Most of the ITP population are unfamiliar. Another crucial point is that very few ever get to try it because unless all the others have failed, their insurances will not pay for it. It's a tier 3 drug, and if anything lower tier, and/or less expensive works that has been tried will be paid by the insurance company first. So unless you're wealthy enough to pay the full price of $11k a month for it on your own, insurance will not approve it if something else older will work, etc. It's also a matter of safety. The insurance companies will pay for older drugs even if they cost the same because they have more history and predictability along with the doctors also preferring historical stability, etc. Because Tavalisse is new and expensive, the insurance companies and the doctors will shy away from it as being their first, second, or even third choice as first try with their ITP patients. In my case, everything else failed and I had nothing to lose by trying such a new drug. N-Plate worked for me, but too good my last time and nearly killed me with two arterial blood clots. So both my doctor and my insurance company agreed it was warranted to try the newest drug at high cost with the least history behind it because I was pretty much out of options, aside from Splenectomy, and that is giving up a lot of my immune system for merely a shot it would work or last. So now I get to keep my Spleen and my immune system as a normal person, and enjoying 200+ counts each blood test with no injections, and no wild fluctuations that N-Plate was giving me. Eventually if enough people demand their doctors try Tavalisse, the more we will see it discussed here and on FB, and the more accurate the statistics will be because 18% of some small group is not the full "ITP population".

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 3 weeks ago #68083

  • CindyL
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I do see Tavalisse mentioned on the FB page quite often. There are 2 FB pages which I found the hard way. I signed up to the wrong one. Now I'm on the right one.

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 3 weeks ago #68085

  • mrsb04
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Camperguy65
I'm glad it is working for you but I suspect you are one of a very small minority.
No drug trial ever will include 100% of the population affected by the condition that the trial drug is being applied to. The criteria for enrolment in any trial are so tight that to expect a high % of 'guinea pig's is unrealistic to say the least.
Fostanatinib (aka Tavalisse in the US) failed world wide trials for rheumatoid arthritis before it was tried for ITP and was withdrawn from IgA nephropathy trials very early on in the trial stage. Rigel have invented a drug and now need to find something it can treat.
I was a participant in the UK ITP trials, randomised double blind for the first 3 months then open label for the next 6 months.
There were 2 of us from my centre chosen for UK arm of the trial and it failed both of us.
The UK has yet to licence it as an ITP treatment presumably because the world wide results were so poor.

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 2 weeks ago #68107

  • camperguy65
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Hal, I'm sorry I got snippy with you. I just hate to see something shot down before it gets a good try by more people, etc. I guess, we'll know more about it for others as time goes on. It's odd that it took me a whole bottle, whole month before I showed any response. I just hope enough people could benefit from it so that it doesn't get discontinued, etc. I'm in my third month now and it's still working. Blood test in a day or two. My doctor says I can just do a blood test once a month now! That's unbelievable for me. I've had to get tested nearly every week for the last 5 years. My scar tissue veins are loving that! N-Plate worked for me, but it was so erratic. As I've said earlier, the others didn't work other than N-Plate and steroids. Maybe, it will work for some others so that we can at least keep it supported and in production. A nurse posted here and said early on it didn't look too promising, but it's working great for me. I hope it can work for others as well. Wishing you all the best. Regards

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 2 weeks ago #68108

  • camperguy65
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Cedrap, it took a month for it to begin working for me so make sure they give it some time. I was all depressed the month it wasn't working, and then, blam, the 2nd bottle, it began.

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TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 1 week ago #68146

  • Hal9000
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No problem camperguy. Just don't let it happen again, LOL.

Ok, now lets get back to work.

I've met one person through PDSA that has had success with Tavalisse. His story was almost exactly the same as yours. ITP started, had a good steroid response, Rituxan treatments worked, then they didn't. Went to Nplate and Nplate response was poor, and I think, steroid response was then weak. Not sure how long it took before Tavalisse started to work for him. I do know that he was taking Nplate all along. Reduced Nplate dose as Tavalisse began to work.

As I understand, the 'SYK' pathway is a destruction signalling pathway. Antibodies are further upstream in the chain of events. Bad antibodies is what causes the eventual destruction.

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