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Stopping treatment 5 months 4 days ago #71619

  • justme
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This may sound like a really stupid question but I’ve had a miserable experience with Tavalisse side effects. Steroids no longer working and rituxan infusions only worked for the first week and numbers went back down. Has anyone felt that maybe you just need to stop all these drugs for a couple weeks and give your body a chance to recover from the side effects? Maybe a 2 week sabbatical?

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Stopping treatment 5 months 4 days ago #71621

  • gozorakgogo
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did you go through a course of 4 Rituximab infusions? It can take more than a few weeks to begin to kick in. I had the 4 infusions and my level really went up right after the 4th. I was also receiving Nplate injections. Your immune system will have been depleted by the Rituximab so there really is no stopping it once you have gone through with the infusions.

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Stopping treatment 5 months 4 days ago #71622

  • justme
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I had 4 rituxan infusions from the beginning till the end of January. My platelets went to 109,000 after the first. By the last, I was down to 43,000. They said it might take 6-8 weeks to show results but nothing. I dropped to 35,000 when I started on Tavalisse. I’ve been on that for about 8 weeks and it is reeking havoc with my stomach and intestinal tract. Now I have a cough. Yesterday I had to drop back down to the 100mg dose. I was taking Prilosec for the stomach pain and Imodium for the digestive problems. I just felt like my body didn’t know whether it was coming or going w all the extra pills I needed to stay on the Tavalisse.

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Stopping treatment 5 months 4 days ago #71623

  • b2h
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Sounds like you are tired of Tavalisse, not all ITP medications. I can empathize. Tavalisse was awful for me too. What other ITP medications have you tried?

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Stopping treatment 5 months 4 days ago #71625

  • justme
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Steroids initially (high and low doses), 4 infusions w Rituxan, Tavalisse. I’ve only been diagnosed abt 2.5 yrs ago and my Dr is very nonchalant abt my numbers. He keeps saying as long as I’m above 30 I’m fine. But my numbers keep jumping up and down with each treatment attempt. Sometimes as much as 50 pts. I really do not want a splenectomy and I’m afraid I’ll never go into remission where it just stays hovered arnd the same number for awhile. I’ve read that some people have tried gluten free diets but I also read and been told by my gastroenterologist that it’s not related to immune disorders. I also read where some people say to stay away from dairy and sugar. I’m just afraid they will run out of treatments options. This is all new and scary for me.

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Stopping treatment 5 months 4 days ago #71626

  • gozorakgogo
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Your Dr telling you that you are fine so long as your level remains over 30 might might be technically true as far as potential danger is concerned but its not addressing quality of life. WIth the Ritux infusions and the Nplate my levels have been stable at around 100 for the last 6 months after having been as low as 2 when I was diagnosed last year. I have been completely off of all treatments since last November.

The most frustrating thing is that there are multiple treatment options that can and are used in different combinations. Some combinations work better than others for some of us but not so well for the rest of us.

When i read that only around 18% - 35% of Ritux users achieve long time response(over 1 year) I wonder how long it will be until I have to go back on some form of treatment. When I also read that 71% of those who had their spleen removed experience long term remission it makes me think that maybe that would be preferable for the long run if I find myself back where I was last year with sub 10 platelet levels

I do know that I can feel in my body when my levels are dropping significantly and its not pleasant.

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Stopping treatment 5 months 4 days ago #71627

  • justme
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Glad your in remission. Hoping to get there soon.

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Stopping treatment 5 months 4 days ago #71628

  • b2h
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gozorakgogo is right about being in the 30 range. Are you feeling ill and having symptoms of ITP? (not medication side effects)
You have many other treatment options and you have by no means exhausted your list of medications. I know it can be worrisome and frightening, but there are still plenty of options. Perhaps make a list of questions and talk to your hemo. again, or find another hemo that you feel more comfortable with and trust more. Getting a second opinion can be helpful.

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Stopping treatment 5 months 3 days ago #71629

  • momto3boys
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Steroids initially (high and low doses), 4 infusions w Rituxan, Tavalisse. I’ve only been diagnosed abt 2.5 yrs ago and my Dr is very nonchalant abt my numbers. He keeps saying as long as I’m above 30 I’m fine. But my numbers keep jumping up and down with each treatment attempt. Sometimes as much as 50 pts. I really do not want a splenectomy and I’m afraid I’ll never go into remission where it just stays hovered arnd the same number for awhile. I’ve read that some people have tried gluten free diets but I also read and been told by my gastroenterologist that it’s not related to immune disorders. I also read where some people say to stay away from dairy and sugar. I’m just afraid they will run out of treatments options. This is all new and scary for me.

I know it can be scary in the beginning, but there is a whole laundry list of treatments that you haven't tried. I had some bad side effects with Tavalisse as well (weird skin rash and crazy high blood pressure spikes in addition to mild GI discomfort). I had to fail off of Tavalisse before I could try Doptelet/Avatrombopag, so it was just an insurance hoop that I had to jump through. My new treatment is working great for me, so it was worth it to go through the process. Please don't despair that you are "running out." I've had ITP my entire life (and I'm now in my 40s), and it's really not bad when you can hit your stride with a good treatment. Prior to Doptelet, I got a good few years out of Promacta/Eltrombopag. Some of the modern treatments work very well for lots of patients, but it will just take time for you to figure out what will work for you. You've basically only tried two major treatments, Rituxan and Tavalisse, so it is waaaaaay too early to throw in the towel!

And definitely don't jump ahead to a splenectomy without trying other things. I had a splenectomy when I was around 8 years old, and here I am still battling the same 'ol ITP. They didn't have many treatment options back in the late '80s, so I can't fault them for trying, but I would sure love to have my spleen back. You are fortunate that there are many options for ITP patients nowadays. It just can be frustrating while you try things to see what can work for you.

I know it can be difficult in the beginning, but having a platelet count above 30,000 is really a safe number to have as you work through the process of finding a treatment. If you aren't having ITP symptoms (bleeding, etc.), then there is no urgent emergency at the moment, and you can give the things that you try time to work. Try not to worry (I know, easier said than done when it's still relatively new for you).

Hang in there and keep us posted!

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