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Diagnosed in March and not sure how to feel.....

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9 years 4 months ago #54747 by Chilita0516
I was recently diagnosed with ITP in March as a result of routine blood tests. It has been quite the experience thus far. I have had two rounds of strong steroids over 4 days period. Each time platelets went up but within a week after stopping the treatment count back down to 10. Have had one platelet transfusion as an emergency treatment.

This past week I had WinRho treatment. I also had every side effect; headaches, renal issues, hemylosis, chills, fever, low blood pressure, high blood pressure, etc. Was just released yesterday. Quite the experience and one I do not want to have again.

I guess I really don't have any questions, just wanting to vent. It was hard for me to understand that there were issues.....you can't feel it.
  • 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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9 years 4 months ago #54748 by Sandi
How low have your counts been and what were your symptoms?

Steroid treatment for ITP is usually given for months, not days. It generally won't work if it's a quick pulse dose.

Yes, I'd stay away from Win-Rho from now on. Not good.
The following user(s) said Thank You: Chilita0516
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9 years 4 months ago #54761 by Chilita0516
Replied by Chilita0516 on topic Diagnosed in March and not sure how to feel.....
my counts go up when on steroids and within a week will drop. For example, at one point I was up 82000 and within a week down to 10000. When I went in for the WinRho treatment I was at 2900. This was exactly one week since my last test with results of 190000. I have a follow up appointment with my doc on Wednesday. I was just released yesterday so will see what he says. The pattern for the platelets is when I am on meds they go up and drown quickly when I am off.

I believe the doctor was just trying to see what would happen, partly because I was having a very strong objection to continued used of steroids. This whole WinRho treatment scared the heck out of me. So been doing steroids for 5 days now,.
  • 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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9 years 4 months ago - 9 years 4 months ago #54762 by Sandi
Chilita:

You don't have to use steroids, but a few days isn't going to do it. Counts will fall quickly if you only take them for a few days.

All of the treatments have risks and side effects, as you are finding out. You have to weigh the pros and cons of each of them.
The following user(s) said Thank You: Chilita0516
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9 years 4 months ago - 9 years 4 months ago #54766 by Rob16
Sandi wrote: "Steroid treatment for ITP is usually given for months, not days. It generally won't work if it's a quick pulse dose."

Chilita - I think you were referring to high dose dexamethasone pulses, of which you had two cycles: "I have had two rounds of strong steroids over 4 days period."

High dose dexamethasone, given as four to six cycles of 4-day pulses, can be effective for a large number of people. A four cycle study showed relapse-free survival at 81% (where relapse-free meant not requiring further treatment to maintain safe levels). A six cycle study showed relapse-free survival at 90%. That article and others on the topic of high dose dexamethasone were discussed here:
pdsa.org/forum-sp-534/7-treatment-general/27806-prednisone-versus-high-dose-dexamethasone.html#46771

For many, the side effects of high dose dexamethasone are intolerable. I can certainly understand your decision to switch to another treatment.

Edit: Relapse-free period was at 15 months.
The following user(s) said Thank You: Chilita0516
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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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9 years 4 months ago #54772 by Sandi
Yep, seems I missed that one. Dex is given for four days but for many, counts do not last.