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Next Steps

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6 years 6 months ago - 6 years 6 months ago #66086 by Sinfoniarc
Next Steps was created by Sinfoniarc
I've been dealing with ITP since 2011 and up until the end of 2017, IVIG was working great. Now it seems to have lost its efficacy. Steroids have "maintained" things to an acceptable level but don't seem to be a long term solution. I recently tried Danazol, an old school method - so old that Walgreens had to order the drug. That was a bomb as well but was a shot in the dark anyway. I've did Rituxamab about a year ago and it wasn't successful but I was also on IVIG while doing it.
Now I'm faced with the challenge of using immuno-suppressants or going to platelet-making drugs such as N-Plate or Promacta. I've read the literature on Promactca and it seems promising. I could also do the splenectomy, but being a type one diabetic doesn't make the best candidate for it. Just wondering if anyone who has been in this situation has any recommendations regarding next steps.
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6 years 6 months ago #66087 by Carcamoc10
Replied by Carcamoc10 on topic Next Steps
I’m just super curious, how often would you do the IVIG? I’ve had it done a few times, but it was never presented to me as a long term solution! As for Promacta, I hear it works very well for a lot of people! I’m on it myself and have tried all the doses, but even though it helps me a little, my levels are still all over the place. I’d say it’s worth a shot, especially since having a splenectomy doesn’t make sense until you’ve tried other treatments imho. Whatever you choose to go with, good luck to you!
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6 years 6 months ago #66088 by Sinfoniarc
Replied by Sinfoniarc on topic Next Steps
I've done IVIG as much as once a week. Most of the time, it was one dose every 2-3 weeks. I really just depended on how my levels were doing. It's important to remember that the levels are just numbers. The doctor is going to be more worried about bruising/bleeding/headaches than the numbers. Some people live comfortably at 50,000 and have no problems even though it's 100,000 below what is considered the bottom of normal range. I've been safe around 30,000 for a while with occasional dips. Needless to say, I've been adjusting to a new level of "normal" but feel fine.

IVIG was also ALWAYS pre-treated with dechadron AND benadryl, which is not a great combination because dechadron makes you hungry and benadryl makes you sleepy. A lot of hemos use dechadron instead of prednisone because it doesn't have to be tapered the same way that prednisone has to be.
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6 years 6 months ago #66089 by Carcamoc10
Replied by Carcamoc10 on topic Next Steps
Wow, that’s interesting. Yeah, I think my Hemo just gets worried about my levels because I crash pretty hard sometimes. A few weeks ago, I was at 1K after he lowered my dosage of Promacta. But he has also said I’m in the small percentage of people who don’t respond to the frontline treatments, although I do respond well to IVIG. They only have me do it when I’m under 20K though, and sometimes a platelet transfusion as well! I understand they are just numbers and I’ve seen how they fluctuate, but I’ve mentioned to my doctor I usually don’t have bruising or bleeding even when I’m under 10K and he still wants to treat anything under 50K with urgency, so I guess it depends on the doctor! I hope you find something that works soon, though, good luck!
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6 years 6 months ago - 6 years 6 months ago #66091 by Carcamoc10
Replied by Carcamoc10 on topic Next Steps
sorry, meant to post my update on another thread!!
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 6 months ago #66092 by karenr
Replied by karenr on topic Next Steps
Research the splenectomy well before you seriously consider it. I went along with my hema, not knowing that people in my age group (advanced!) had a much smaller chance of good results from a splenectomy. Even now I have to convince my hema (a different one) that even if I do have an accessory spleen, another splenectomy probably would do no more good than the first one. The surgery itself wasn't difficult, but it would be better to have a spleen than not to have one.
Karenr
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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6 years 6 months ago - 6 years 6 months ago #66098 by mrsb04
Replied by mrsb04 on topic Next Steps
I refuse to part with my spleen. Keep yours is my advice and try Promacta. It can take a while to kick in and find the correct dose but worth it in my opinion.
I did Pred which only works at >20mg, Azathioprine, MMF, Fostamatinib & NPlate before starting Promacta. I so wish I had been put on it in the first place.
As with all treatments it’s the symptoms not the count that is important. If I could be drug free with a count >30 I would be over the moon.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 6 months ago - 6 years 6 months ago #66102 by Hal9000
Replied by Hal9000 on topic Next Steps
That was gutsy to try Danazol. Let me guess. The liver enzymes shot up? Been there.

Sorry to hear IVIG has lost its efficacy. Those with a steroid response but fail Rituxan is difficult too. IMHO, I'd go straight to Promacta or Nplate. A single suppressant may not do the trick.
ITP Types and Treatments by HAL
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6 years 6 months ago #66209 by Sinfoniarc
Replied by Sinfoniarc on topic Next Steps
Danazol lasted about a week. That was about all I could tolerate. It blew my stomach up like a balloon and I'm pretty sure I suffered some general weight gain as well because of it. No more of that stuff. I'm probably going to start Promacta next week as it's mail order only, I found out. Apparently you can't just go into Walgreens or CVS and pick it up. My doctor mentioned a new drug called Tavalisse as well for possible options. Ever tried that stuff?
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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6 years 6 months ago - 6 years 6 months ago #66211 by mrsb04
Replied by mrsb04 on topic Next Steps
Tavalisse aka Fostamatinib, was trialled for ITP after it failed to work for Rheumatoid Arthritis. It has recently been licensed in the USA for ITP despite achieving only 18% success rate during clinical trials world wide.
At this present time I'm pretty sure the USA is the only country to actually grant it a license. I was a patient on UK arm of trials. Both double blind randomised and open label trials . It didn't work for me at all and my co patient on the trial had a transient response only.
IMHO try Promacta and give it time. It can take a while to get going.
The following user(s) said Thank You: Sinfoniarc
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6 years 5 months ago #66310 by Sinfoniarc
Replied by Sinfoniarc on topic Next Steps
Thank you. Began Promacta on Tuesday, the 9th. Not much response so far, but I'm sure it's still early. So far, the Promacta has left me with severe dry mouth and dehydrated, at times, but I think that's the only real side effect I've experienced so far.
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