Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Reducing Promacta & Quercetin

More
5 years 10 months ago #69253 by Karpos
Reducing Promacta & Quercetin was created by Karpos
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?

Please Log in or Create an account to join the conversation.

More
5 years 10 months ago #69256 by Carcamoc10
Replied by Carcamoc10 on topic Reducing Promacta & Quercetin
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!
The following user(s) said Thank You: Karpos

Please Log in or Create an account to join the conversation.

  • 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.
More
5 years 10 months ago #69259 by mrsb04
Replied by mrsb04 on topic Reducing Promacta & Quercetin
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.
The following user(s) said Thank You: karenr, Karpos

Please Log in or Create an account to join the conversation.

  • ecoclayton
  • Offline
  • Diagnosed with ITP 5/23/19
More
5 years 10 months ago #69260 by ecoclayton
Replied by ecoclayton on topic Reducing Promacta & Quercetin
I also use Flonase when I travel up north and it doesn't affect my platelets.
The following user(s) said Thank You: Karpos

Please Log in or Create an account to join the conversation.

More
5 years 10 months ago #69261 by MelA
Replied by MelA on topic Reducing Promacta & Quercetin
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
The following user(s) said Thank You: Karpos

Please Log in or Create an account to join the conversation.

More
5 years 10 months ago #69266 by Karpos
Replied by Karpos on topic Reducing Promacta & Quercetin
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!

Please Log in or Create an account to join the conversation.

More
5 years 10 months ago - 5 years 10 months ago #69267 by Karpos
Replied by Karpos on topic Reducing Promacta & Quercetin
Thank you! Helpful feedback about Flonase!

Please Log in or Create an account to join the conversation.

More
5 years 10 months ago #69268 by Karpos
Replied by Karpos on topic Reducing Promacta & Quercetin

mrsb04 wrote: 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

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers!
Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or pdsa@pdsa.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.