Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: TAVALISSE HAS GIVEN MY LIFE BACK!

TAVALISSE HAS GIVEN MY LIFE BACK! 6 months 1 week ago #67969

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
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!
The following user(s) said Thank You: MLinhoff

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 6 months 5 days ago #67999

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
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 !

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 6 months 5 days ago #68000

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 3 weeks ago #68044

  • cedrap
  • Offline
  • Posts: 12
  • Thank you received: 3
I'm about to start Tavalisse so this gives me hope!
The following user(s) said Thank You: camperguy65

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 3 weeks ago #68071

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 3 weeks ago #68077

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
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".

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 3 weeks ago #68083

  • CindyL
  • Offline
  • Posts: 1227
  • Karma: 1
  • Thank you received: 142
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 3 weeks ago #68085

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 2 weeks ago #68107

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
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

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 2 weeks ago #68108

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 5 months 1 week ago #68146

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
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.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 2 weeks ago #68450

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Comment deleted to update on a more recent post.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 2 weeks ago #68452

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
Was there any evidence of an infection Camperguy?

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 2 weeks ago #68453

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Not tested, but having a colonoscopy and maybe upper GI done soon. Not 100% positive the Tavalisse was doing it, but still working on figuring out what is going on. Seemed like it improved going off the Tavalisse, but today got pain again, and still off it. Took three different round of double anti-biotic regiments, and it would keep coming back. Maybe being exacerbated by the med. I will revise my comments and update when I get the testing finished and try going back on it to see if there is a change. It all began when I left rehab and had began Tavalisse at the same time. I hope it wouldn't be the medication because I really need it, and it was working. Still trying to get to the bottom of this.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 2 weeks ago #68454

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
3 lots of antibiotics without proof of need is a bit excessive

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 1 week ago #68479

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
I am very sorry to hear that Tavalisse is not working out camperguy. And it was looking so promising too. One has to wonder if blocking the 'SYK' pathway is preventing the immune system from destroying whatever bad is going on in the gut. As you mention, perhaps you can recover after the break in Tavalisse use.

Some other options come to mind. First, going back to Promacta and trying a higher dose. Perhaps 100 to 150 mg dose will yield a response for you, as it has for some others that didn't respond to 75 mg. If that doesn't work then 'Doptelet', another FDA approved bone TPO receptor agonist, should do the job. It is ~4 times more potent than Promacta.

Second, there is another destruction pathway blocking drug that, as I understand, works similar to Tavalisse but has far fewer side effects / adverse events. I heard about it while I was at the PDSA conference this past summer. It is called 'PRN1008'. It blocks the 'BTK' pathway instead of the 'SYK' pathway. It is not FDA approved yet but there is a clinical trial going on. Here is the link. Perhaps one of the listed locations is near you.
clinicaltrials.gov/ct2/show/NCT03395210

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 1 week ago #68483

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Well folks, it's been 5 1/2 months now on Tavalisse. My count is holding at 60ish. Had chronic abdominal pain, but the Tavalisse doesn't seem to be the problem. I had stopped it for a while to test, but it didn't seem to make any difference. I'm still working on my abdominal issues with with a GI group. I suspect maybe an ulcer because I've had one before. Tavalisse still remains my best friend.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 6 days ago #68536

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
Ah, ok. Sounds like you are going to get through it. 60 is good.

I was talking to that person that I mentioned earlier, who is successfully taking Tavalisse, this past weekend. He had gut problems too during the past few months. Stopped the drug for awhile. Restarted at, as I recall, 200 mg once a day. Previously was taking 150 mg twice a day. Since then, less gut problem. Also, had to go back to a very small dose of Nplate.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 5 days ago #68541

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
I'm taking 100mg twice a day. Never took the 150s. I'm still having pain in the gut. I have to get a GI doctor to take a look. I had stopped taking it for like 4 days, but it didn't seem to make any difference at all. Maybe longer time to tell, but afraid to go off it too long. My hematologist/oncologist says it was tested pretty thoroughly approved in Europe among the populations before hitting the FDA, and not just the controlled testing trials, and that abdominal problems were never high on the list of its adverse affects, but raising blood pressure was the most common problem with it. I may have some kind of ulcer, so I need a camera put down to find out.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 3 months 5 days ago #68542

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Thanks HAL for that info on the new drugs. I was getting to the end of my rope if the Tavalisse didn't work or can't tolerate it, so good to know there are some new ones around the corner and more about the Doptelet. The bone marrow boosters scare me a bit because of what happened to me on N-plate, though I really believe they may have overdosed me to have caused me a 1,000 count spike proceeded by the Aortic clot. Going to keep an eye on that "PRN1008" you mentioned. Thanks HAL

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 1 week ago #68665

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
One of the advantages of Promacta or Doptelet is that one can start or stop the drug on a day to day basis. Another is self supervising of the dose.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 1 week ago #68666

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Promacta did not work on me. N-plate being in the same class (platelet overproduction in the bone marrow), but intervenous N-Plate spiking my platelets nearly killed me with an Aortic blood clot. This class of drugs has been stricken from my list of possibles. The latest drug in testing right now works in the spleen like Tavalisse to block destruction, but it's an injection. My doctor has confirmed this having recently attended an ITP convention for Oncologists. Tavalisse is giving me abdominal issues if I take more than 100 mg per day. However, I've thus far maintaining a 60 count with only 100 mg per day. I love the oral benefits of not being chained to an infusion center, but it's nice to hear that the next drug out will work similar to Tavalisse by reducing platelet destruction in the Spleen and offer this without affecting the GI tract if Tavalisse is a problem in the gut for some.

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 4 days ago #68709

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
Cheers to 100mg working camperguy !

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 2 days ago #68732

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Thought I was good, but still having pretty serious abdominal issues on 100mg day (half prescribed dosage) of Tavalisse. I'll keep updating. Want to try Doptelet, but Dr. said since one month of Promacta never did anything for me, she doesn't want to give me Doptelet. I say that's BS, and not very scientific of her to make assumptions. May have to find a new Oncologist. She just keeps seemingly ignoring my claims of abdominal problems with Tavalise. I even went to GI Dr. and trying Linzess to battle the Tavalisse, but it seems to not really help much, or it even makes it worse. All these meds seem to be making my muscles very stiff, and affecting my heart strength with some new signs of palpitations. I'm almost to the point of requesting my Spleen be removed if I can not get Doptelet to try and have it work. I don't think I will be able to keep going on the Tavalisse. The new med being tested HAL had mentioned will be another two years before it's out. It is an injection says my Dr. That may be a good thing. It works in the Spleen similar to Tavalisse, but may not give people the abdominal issues of it being oral like Tavalisse. Tavalisse has been reliable with steady good counts for 6 months now. I think researching these new drugs that work in the Spleen is on the right track, since ITP can be mainly two groups. Either low platelet production in the marrow for some vs normal platelet production in others but with the overactive Spleen, etc. Targeting both root areas. N-Plate, Promacta, and Doptelet boosting production in the marrow. Tavalisse being the first to chemically address the Spleen. The fight continues on!

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 2 months 2 days ago #68734

  • MelA
  • Away
  • Posts: 502
  • Karma: 2
  • Thank you received: 148

camperguy65 wrote: May have to find a new Oncologist. She just keeps seemingly ignoring my claims of abdominal problems with Tavalise.


Camper this is from the Tavalisse site - tavalisse.com/
What are the possible side effects of TAVALISSE?
The most common side effects of TAVALISSE include:

Nausea, rash, dizziness, tiredness, respiratory infection, chest pain, and stomach (abdomen) pain.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

TAVALISSE HAS GIVEN MY LIFE BACK! 1 month 4 weeks ago #68767

  • camperguy65
  • Offline
  • Posts: 25
  • Thank you received: 4
Today, I had visit with my Hemo. Had to show her Doptelet was expanded to include regular, long-term, ITP patients. Surprisingly, things went well this time. She is going to order me Doptelet. I've just gotten to the point of such problems with my abdomen I must try Doptelet. I can not go on in misery on the Tavalisse though it was working beautifully for me holding me around 60 consistently month to month after it settled down initially from higher counts. I see here Doptelet can be very erratic, much like Nplate was for me. That scares me having just survived an Aortic clot on Nplate with the worst victim being my lower right leg, where a piece of the clot broke off in my Aorta and blocked my leg causing perm nerve damage, and a Fasiotomy. Because Tavalisse has worked so well for me orally (less the abdominal dysfunction, pain, etc.) I'm crossing my fingers for the newest drug in the pipeline HAL got me onto, which is PRN1008. My Hemo/Onc told me that it's an injection. It will be the 2nd drug that works in the Spleen like Tavalisse, less the abdominal issues from oral relative Tavalisse, I'm hoping, but we have 1 year and 8 months to go until the trials finish. I could likely become a test rat for PRN1008 as their is a location nearby, but it's either become a lab rat, or try the Doptelet. I'm just very shy of the platelet boosters (TPOs) now, since I had the blood clot while on Nplate. I don't know if it be safer to just avoid Doptelet, and become a lab rat if they'd add me.
The following user(s) said Thank You: Hal9000

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo