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Four years after Rituximab

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8 years 4 days ago #60964 by kyasseen
Four years after Rituximab was created by kyasseen
Hi People,

I hope you are all well. I thought i'd update you on my journey, its been four years since I went into remission after Rituximab treatment.
Just had bloods done, and my platelet count is (-drum roll):

179

So very pleased.:cheer: This is very on the right side of the normal range.

Interestingly the count has progressively gone up each year. So things continue to change on the inside. What that change is, the hematologist can't say.
Anyway, happy days.

All the best
abuisa
The following user(s) said Thank You: D.Mann
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 3 days ago #60974 by Hal9000
Replied by Hal9000 on topic Four years after Rituximab
Hello kyasseen. I notice from your history (doing some user report analysis) that you had a strong steroid response (280 on 40mg). Further, that you almost got remission from steroids. Looks like you've never had IVIG. Then with Rituxan, you had a slow rise in counts after treatment, and that counts seem to go up a bit over the years since.

A couple question come to mind for you. Did you ever consider a Dex pulse? I mean, after Prednisone worked so well. Or did you keep trying to get a remission with Prednisone and it just never worked out?

You've talked about getting month blisters with counts less than 30. Would you estimate that ITP came on very quickly, or, could it have happened slowly over a long period of time?
ITP Types and Treatments by HAL
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7 years 11 months ago #61384 by Astanl9
Replied by Astanl9 on topic Four years after Rituximab
That's awesome news.

I finished my rituximab a little over a month ago and it seems to have stabilized at 120. Which is okay but not the results my Dr and I had hoped for. I'm tapering off Prednisone now and we are just at the watch and wait stage (or the frustrating stage as I like to call it)

Im not even on year 2 of ITP and I've gone through basically every treatment there is :/
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7 years 10 months ago #61779 by kyasseen
Replied by kyasseen on topic Four years after Rituximab
i never considered DEX pulse, and the haeamtoligist never suggested it. I was from the very beginning a good responder to prednisone. But when ever I came of it, my counts would crash. Plus this really does have nasty side effects. In the UK prednisone is the first line use for ITP. After a rollercoaster experience with prednisone it was either splenectomy or rituximab. After the indium test (-didn't work for me), i opted for Rituximab. It was slow at first, but i've had 4 years of remission now. And the best counts since being diagnosed.

My ITP started suddenly with really nasty bruises appearing on my stomach. I can't prove it but I had an operation on my shoulder to remove a small lipoma. It was a few months after this operation that the ITP occurred. Correlation or causation? having said that immune conditions are pretty rampant in my family e.g. arthritis.
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7 years 10 months ago #61780 by kyasseen
Replied by kyasseen on topic Four years after Rituximab
give it chance. rituximab can be slow to start. ITP is a complex condition there are probably at least 3-4 underlying mechanisms that give rise to it, hence why we all respond differently to each treatment.

All the best.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 10 months ago - 7 years 10 months ago #61785 by Hal9000
Replied by Hal9000 on topic Four years after Rituximab
Thanks for the feedback kyasseen.
Lipomas run in my dad's side of the family as well. Wiki says it affects 2% of the population yet here we are, both with ITP and both with Lipomas, talking about it. More coincidence or correlation.
I ask about how sudden your ITP came on because of the blistering with counts in the 30s. That count seems higher than most for blistering.
Perhaps not having ITP very long before remission has contributed to your comparatively long (Rituxan) remission.
ITP Types and Treatments by HAL
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 10 months ago #61788 by Sandi
Replied by Sandi on topic Four years after Rituximab

Hal9000 wrote: Perhaps not having ITP very long before remission has contributed to your comparatively long (Rituxan) remission.


That wasn't the case with me. I had ITP for 6 years before I tried Rituxan. I got a years remission the first time, and so far, 12 years after one infusion the second time.

I know, I always have to throw a wrench into your theories, Hal. I have often seen long remissions from people after their second round if they responded well the first time no matter how long they were diagnosed. Some people even get long remissions the first time.
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7 years 10 months ago #61793 by MelA
Replied by MelA on topic Four years after Rituximab
Have a friend - so far remission still, 10+ years after Rituxan.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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