Anyone living with Essential Thrombocythemia with JAK2?

For what it’s worth…I am 91 and have been on Hydrox since 2020 with varying amounts daily. Initially I was also on one baby .81 aspirin a day. I am also on Eliquis. I had been taking one baby aspirin daily for probably 40? years when last year my gagle of docs urged me to drop aspirin. They claimed I was at high bleeding internal risk if I fell. I was hesitant to do so but I have listened to Mayo doc since mid-nineties and now that I am in Phila. also have oncologist at U. of Pennsylvania so do what I’m told! Main problem is hydro not only kills excess platelets but knocks down blood cells delivering ovygen so as to create tiredness etc, But hey, most people I know are tired at 91!! My doc would rather me have platelets in 600-700 range than be anemic! Anybody else over 90? My PA doc says he has two patients on hydrox over 100! Hmmm
Merle

I have been on hydroxyurea for approximately two years because of a ET. When I started my doctor prescribed One 500 mg hydroxyurea a day. In the beginning, my platelets were at 780. After starting the hydroxyurea platelets came down to. 450. I stayed on this for a good while. Eventually, he wanted me to take two 500 mg per day because my platelets went up to around 498. I came down with Covid and my platelets went to 570. My oncologist had me to continue with two per day with the exception of Tuesday and Thursday. I take three 500 mg each hydroxyurea. I am taking one baby aspirin a day also. I feel my oncologist is being unusually aggressive and question this regiment. When I read that some people only take one or two baby aspirin a day even if their platelets are in the 500 to 600 range. I am 78 years old and in fairly good health with the exception of this issue. let me know what you think. I am considering getting a second opinion.

For what it’s worth…I am 91 and have been on Hydrox since 2020 with varying amounts daily. Initially I was also on one baby .81 aspirin a day. I am also on Eliquis. I had been taking one baby aspirin daily for probably 40? years when last year my gagle of docs urged me to drop aspirin. They claimed I was at high bleeding internal risk if I fell. I was hesitant to do so but I have listened to Mayo doc since mid-nineties and now that I am in Phila. also have oncologist at U. of Pennsylvania so do what I’m told! Main problem is hydro not only kills excess platelets but knocks down blood cells delivering ovygen so as to create tiredness etc, But hey, most people I know are tired at 91!! My doc would rather me have platelets in 600-700 range than be anemic! Anybody else over 90? My PA doc says he has two patients on hydrox over 100! Hmmm
Merle

Good morning, I was diagnosed Nov 2022 with ET. Taking 1000 mg
Hydroxuria daily. Feel great, used to be tired in the afternoon, not so
much anymore. My platelets are stable in the 350 to 390 range.
Female, 69 years old.
Had total Hysterectomy 6 weeks ago. I looked up my pre op
blood work, noticed that my Rdw is high, 55 fl , everything else looked good.
10 days before I had my 4 months check up with my Hematologist.
My rdw was 45 fl, everything else looked good. Has anyone had this problem?
I do not take any other medications.
My next check up is not until the end of Febr. 2025. With the Christmas
and new Year season it is hard to get a hold of anybody. Will contact
my Dr. after new year.
Thank you for reading my post.

On another forum, I saw postings from individuals taking HU for ET, who have seen high RDW values in their blood work.

When they asked their doctors about it, they were told it that may be a side effect of HU, and not a cause for concern -- but maybe an indication that taking a multivitamin could be helpful.

Of course, only your own doctor can evaluate what the higher RDW count may mean for you.

I hope you won't have to wait a couple more months before having your question answered. It's impossible not to worry when we get "off" numbers.

You've been through a lot! To better days ahead.

Good morning, I was diagnosed Nov 2022 with ET. Taking 1000 mg
Hydroxuria daily. Feel great, used to be tired in the afternoon, not so
much anymore. My platelets are stable in the 350 to 390 range.
Female, 69 years old.
Had total Hysterectomy 6 weeks ago. I looked up my pre op
blood work, noticed that my Rdw is high, 55 fl , everything else looked good.
10 days before I had my 4 months check up with my Hematologist.
My rdw was 45 fl, everything else looked good. Has anyone had this problem?
I do not take any other medications.
My next check up is not until the end of Febr. 2025. With the Christmas
and new Year season it is hard to get a hold of anybody. Will contact
my Dr. after new year.
Thank you for reading my post.

On another forum, I saw postings from individuals taking HU for ET, who have seen high RDW values in their blood work.

When they asked their doctors about it, they were told it that may be a side effect of HU, and not a cause for concern -- but maybe an indication that taking a multivitamin could be helpful.

Of course, only your own doctor can evaluate what the higher RDW count may mean for you.

I hope you won't have to wait a couple more months before having your question answered. It's impossible not to worry when we get "off" numbers.

You've been through a lot! To better days ahead.

Yes, I also have high RDW. Doc said it's because the HU "excites" the blood system, and it's nothing to worry about. I ignore it now.

What other forum do you use?