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Reducing Promacta & Quercetin 2 years 5 months ago #69253

  • Karpos
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Does anyone have insight on how to go about reducing promacta? I've been slowly reducing for years. It takes months to adjust.
Another question: does Quercetin affect platelet counts? And Flonase?

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Reducing Promacta & Quercetin 2 years 5 months ago #69256

  • Carcamoc10
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I’m only chiming in about the Flonase, I haven’t personally noticed it affects my platelets one way or the other. Hope this helps!
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Reducing Promacta & Quercetin 2 years 5 months ago #69259

  • 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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When I started my topic 'Started Promacta February 2017' a lady on here called Margaret K
(pdsa.org/user-profile/7605-margaret-k.html) gave me lots of useful advice.
10 months ago she posted to me I just worked out that it has taken 13 separate reductions of 25 mg per week each time for me to have come down gradually from 75 mg daily to almost 25 mg daily, over 3.5 years. In that time after having built up to a count of 150 in the first 6 months, I have never been below 90 and only above 150 briefly, always coming down with the small dose reduction.It was just as well I stayed at about 100 , given that I had to have two major operations last year. fortunately nothing seems to lower my count, not illness or stress , ( and I had a lot of stress last year) alcohol or foods. Fingers crossed things continue this way.

A couple of months later later she posted on Groucho's topic 'Promacta treatment 14th October' 3years 10 months after being at 1 I am now stable at about 120 on 25 mg daily of eltrombopag. I started out at 75 mg daily and it has taken this long, almost 4 years of gradual dose reductions , to get to this happy situation.

So it's a long slow job. I started on 25mg/day and am now on 75mg/day. I have just spent the last 3.5 years tapering off Prednisolone. My haemo told me she has one patient who only takes 25mg twice a week after a long slow taper.
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Reducing Promacta & Quercetin 2 years 5 months ago #69260

  • ecoclayton
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I also use Flonase when I travel up north and it doesn't affect my platelets.
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Reducing Promacta & Quercetin 2 years 5 months ago #69261

  • MelA
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Been using the generic of Flonase for years - does not do anything to my platelets.
However since I heard steroids could be a problem with this virus I haven't used it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Reducing Promacta & Quercetin 2 years 5 months ago #69266

  • Karpos
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That sounds about right. I've been on Promacta for years and have been slowly reducing but it takes months to recover. Very slow process. Thank you!

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Reducing Promacta & Quercetin 2 years 5 months ago #69267

  • Karpos
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Thank you! Helpful feedback about Flonase!

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Reducing Promacta & Quercetin 2 years 5 months ago #69268

  • Karpos
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When I started my topic 'Started Promacta February 2017' a lady on here called Margaret K
(pdsa.org/user-profile/7605-margaret-k.html) gave me lots of useful advice.
10 months ago she posted to me I just worked out that it has taken 13 separate reductions of 25 mg per week each time for me to have come down gradually from 75 mg daily to almost 25 mg daily, over 3.5 years. In that time after having built up to a count of 150 in the first 6 months, I have never been below 90 and only above 150 briefly, always coming down with the small dose reduction.It was just as well I stayed at about 100 , given that I had to have two major operations last year. fortunately nothing seems to lower my count, not illness or stress , ( and I had a lot of stress last year) alcohol or foods. Fingers crossed things continue this way.

A couple of months later later she posted on Groucho's topic 'Promacta treatment 14th October' 3years 10 months after being at 1 I am now stable at about 120 on 25 mg daily of eltrombopag. I started out at 75 mg daily and it has taken this long, almost 4 years of gradual dose reductions , to get to this happy situation.

So it's a long slow job. I started on 25mg/day and am now on 75mg/day. I have just spent the last 3.5 years tapering off Prednisolone. My haemo told me she has one patient who only takes 25mg twice a week after a long slow taper.


Thank you--I agree it has been a very slow process of reducing!
The following user(s) said Thank You: karenr, mrsb04

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