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Thinking about working again, but... 1 year 11 months ago #70328

  • ImPatient
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I often have a lot of pain, especially like somebody's stabbing a knife through my spine and sternum, headaches etc, I have diarrhea several days a week, and my joints are swollen and hurt- probably due to Revolade. And I'm super forgetful.
Any advice? I'm not even taking that much, but I'm afraid of getting sick at work or constantly forgetting important things.
Right now I'm on unemployment and I could get a sick notice again, but I would like to work if possible.

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Thinking about working again, but... 1 year 11 months ago #70329

  • MelA
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I have no advice for you - but I didn't know Rovolade/Promacta had all those side effects. Bless your heart!
Does it keep your count at a good level?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Thinking about working again, but... 1 year 11 months ago #70331

  • mrsb04
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  • 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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I've been on Eltrombopag for almost 4 years and never had any of those side effects. If I had I certainly would not have stayed on it. Have you though about trying something else?
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Thinking about working again, but... 1 year 11 months ago #70332

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Hi Mrsb04 & MelA-
Oh really! I thought it was sort of normal or maybe I had a bit stronger side effects than average. NPlate was a lot worse for me. So I thought Revolade's an improvement. Prednisone didn't really work enough to keep my counts up at all (dropped below 20), I think high doses of Dexamethasone are meant to be only for a few times. I didn't have anything else.

I had taken Eltrombopag 25mg daily since February this year and lowered the dose to every other day at the end of October. Remember we were talking about whether I should cut the pills, but for me, the counts stayed relatively stable doing it every 2 days too: 123000, 150000, 137000, 145000. Since I lowered it the side effects have gotten a lot better, but still quite strong. I was hoping since my counts are still stable that I can quit taking medication entirely sometime next year. Though of course I don't know whether work stress would decrease my platelet count again...

I'm also taking part in a study for ITP, so maybe I will have some more updates soon.

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Thinking about working again, but... 1 year 11 months ago #70333

  • mrsb04
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  • 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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Goodness if my counts were that high I would be trying less meds or even stopping all together. The protocol is lowest dose possible to keep count over 50. Can you not go down to every 3rd day?
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Thinking about working again, but... 1 year 11 months ago #70334

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Hi MrsB04- Yes my hematologist said we'll do every 3 days starting January if I'm still that high. And if it then stays high, go lower and lower, 4 days, 5 days etc.
I was in my 50s once at the beginning of September with 25mg/ everyday, so we're not sure it's that stable just yet. I hope it is.

I think I'll take part in a seminar from the employment department, that way I can see, if work stress lowers my platelets or if it looks like it happens only with extreme stress. I'm also a bit afraid because my last work place didn't let me have enough time to see my doctors, next time I just won't put up with it.

Actually- September, that is already 3 months since it's been under 100 & almost 2 months with 25mg/every other day. I think the problem right now is I can't see my hematologist till January and he wants to check me weekly when I lower my dose

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Thinking about working again, but... 1 year 11 months ago #70335

  • mrsb04
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  • 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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I would query the weekly tests, protocol is fortnightly. My haemo told me there is a chap who attends my ITP centre who only takes a dose once a week.

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Thinking about working again, but... 1 year 11 months ago #70336

  • gozorakgogo
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Its strange how I got hit with ITP at age 54 out of the blue. No health issues, no going to the dr(before ITP), not having a medicinal prescription for myself in over 25 years then BOOM all of a sudden Im in the Hospital for 10 days over a 3 week period. I tested negative for all the "known" potential causes. Crazy

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Thinking about working again, but... 1 year 11 months ago #70339

  • ImPatient
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Mrsb04- That'd be a relief. I'll see how it goes after the holidays. Couple more weeks of pain, but I didn't expect to find a job before Christmas anyway.

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Thinking about working again, but... 1 year 11 months ago #70340

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Gozorakgogo- Same here. You can probably count the times I had been at doctors' on one hand the ten years before I got ITP as well. Cause also not entirely sure. My guess is I had some virus (EBV, Shingles, etc did show on my tests) that maybe started lowering my platelet count and then it got a lot worse through extreme chronic stress. But I don't know that.

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Thinking about working again, but... 1 year 11 months ago #70342

  • MelA
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gorzo and ImPatient I would bet the majority of us were healthy before ITP hit! I was.
But I don't consider myself unhealthy just because of ITP.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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