I am trying not to ask questions too often, but today can't sleep because I am concerned.
I am on Hydroxy since almost 6 years for PV. After initial side effects my blood counts became stable and have remained ok until now. My platelets are up to 540 the first time in 4 years, WBC is 7.5, but leucocytes are only 15.6, RBC are 13 and Hematocrit is 37.
As always in my situation, the doctor says let check later again, but I have not been feeling so good since a few weeks. Now I am worried that Hydroxy is not working any more. What would be the indicator that Hydroxy is not working any more?
Has anybody had similar things happen, and then returned to "normal"?
Thanks so much for any shares,
Anke
Written by
love0826
To view profiles and participate in discussions please or .
Can't help Anke but just want to say, imagine if no one asked questions . We wouldn't have a forum !!!AND your questions are probably ones others don't like to ask . So you are helping others.
When is next blood test ? .If its not in a few weeks, ask for one sooner.
You will no doubt get some responses here that will equip you to be armed with questions to ask you Dr.
Hi Anke, you don't need to worry about asking to many questions. I am sorry that you haven't been feeling too well recently, it's good that your doctor is going to check your levels again, platelets can go up and down, even an infection, like a cold, can cause platelets to rise, so don't worry too much at the moment, you might find they are back to your usual levels when you have your next blood test, and it may be that you have a change in the dose of your Hydroxycarbamide. Speak to your doctor again and raise your concerns. Best wishes, Maz
I would agree with your Dr on this when he says lets check again later. I've had Et jak2 positive for 14yrs mostly unstable for about 11yrs in terms of blood counts then for about the last 3yrs pretty much stable then last 2 bloods draws platelets and whites significantly climbed. In fact I have to go to the hospital this morning to have some blood tests re-run what the Gp ordered nearly 2 weeks ago, not that concerned as their are a lot of bugs around at the moment and I also have just recovered from a recent nasty chest infection. Roll on the sunshine and warmth!
oh dear but in my case I was rarely stable in 6 years. I think I managed a whole year of stability. Apart from that my meds would increase almost 3 monthly to combat the platelet rise. I was extremely sensitive to my platelet rise. I could tell once I went over 450, sometimes even 400. This could be in your case too. Eventually I changed to Peg.
No looking back!
I’m Calr ET.
The doctor is monitoring you so try not to be upset.
Funny you should say that Wyebird about being sensitive to your platelet counts because I never connected it together. Its only because I was pretty much stable for 2/3 yrs, well under the 500 mark and then suddenly having old symptoms return and then finding out my platelets had suddenly jumped back up over the 500 mark that I realised how sensitive I had become to it.
Hi William-Indo, thanks so much for your kind reply. I just saw your post on soursop...have you tried it? I find it hard with supplements, even probiotics, in concern of the possible interaction with Hydroxy and asperin. For example, I used to take probiotics regularly before my diagnose, for bladder and GI health, and continued up to recently, when I found out that probiotics may interfere with Hydroxy and compliment actually infection, because of the use of Hydroxy. I used to be a no medication person, only in emergency, but I loved herbal supplements, like Holy Basil and Motherwort for stress relief and sleep....now , since I already have to take meds, I don't want anything to interfere and I miss the herbs
, especially for good sleep. But soursop grows here all over the place, let us know if you tried it.
I keep reminding my husband (PV, age 77) to hydrate. I think his lack of hydrating causes his excessive tiredness. Does anyone ever get extremely tired where feelings overcomes your whole body and you toss in frustration?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and I miss the herbs
No curcumin while on hydroxy?
How the Hydroxy treatment goes in time?
Hydroxy on the rise
After 4 weeks on Hydroxy comments and questions
