I am jak2 neg Carl positive. Been diagnosed 5 years. Thankfully no real problem. On 1500mg hydroxy day plus 75 mg asprin. My platelets at 490.
I would like to give my body a rest. Should I? Can I? Just continue with the asprin.
I would like to see if the tinnitus, joint pain, and fatigue might subside.
Opinions most welcome 💖
Hi Lynne,
I have been taking Hydrea for 10 years and have often thought I would love to take a break from it. I got my wish last week when my all my blood counts had been knocked low by a higher than normal dosage. I’m going today to check my counts after a week off the meds to see how fast they have come back.
As for taking a break from Hydrea...I really wouldn’t consider that without consulting your doctor. From what I understand it’s a fast acting drug and your platelet counts could rise quickly once you come off. Perhaps the next time you see your doc, let them know you would like to try having a break, but make sure you are being monitored and having your blood counts done frequently?
I also suffer with tinnitus and have been told that it’s often a symptom of ET as the thick blood can damage the tiny blood vessels in the ear. My tinnitus seems to come and go and I wonder if it has more to do with stress or possibly diet? I’m trying to keep a journal to make a note of when it gets worse to try and figure out the cause. I have found that meditation and getting out in nature help my tinnitus immensely.
Sarah ❤️
Thank you so much for replying. I trust my consultant and wouldnt do anything without her say so. I am just on a negative plane at the moment.
Tinnitus is a constant. But I agree with you that being outside helps a great deal.
On the whole we a have a lot to be grateful for.
Stay safe and well.
Lynne
Hi,
I have been on Hydroxicarbamide for 7 years. I stopped for 3 weeks last year, on the advice of my heamatologist , while I started Methotrexate for RA. In that 3 weeks my platelets went from 400 to 900!
Don’t stop without consulting your heamatologist.
Best wishes
Judy
Hi there.
Certainly worth a conversation with your haem. Since you trust your Haem and value her opinion this should be productive.
It may also be worth exploring other treatment options. People often feel better as a result of drug intervention (I certainly did!). Perhaps you are just on the wrong drug!
As everyone has acknowledged definitely don’t just stop taking the Hydroxy without talking to your Haem first. Let us know the outcome.
Hi Lynne, maybe you could ask your consultant if you can decrease the Hydroxycarbamide a bit, perhaps take them on alternate days, something like that. Best wishes, Maz
When I was first diagnosed in 2008 with ET Jak 2, my platelets were about 587. My hematologist put me on HU and within a few months my numbers went down to 350. I stopped taking the medication on my own and ended up in the hospital for three days with a blood clot in my spleen. My numbers had skyrocketed to 800 and I was in terrible pain. I thought I was having a heart attack. Even though I went back on the meds, my platelets never normalized again.
Just wanted to share my story. Everyone is different but I would definitely check with your doctor before making any changes.
Wow. Thank you for replying. What a nightmare for you. Wouldnt do anything without my consultants agreeing. I just wondered what the possibility was of having some respite from the medication.
I found your reply interesting. I had steady platelet count for about 9 months when in. I nuction with my haemo we dropped 1 tablet a week. Ever since then for the following 4 years my platelets rose steadily and do to my dismay did my meds.
Only this last 12 months I have stabilised ( I now take double my original dose) x
You can, of course, do anything you would like to do regarding HU since it is your body. Whether you should do it is a different question. Whether you should be taking HU is another question. It all depends on your risk factors and whether you have actually had any incidents of thrombosis or hemorrhage. There is no linear relationship between platelet levels and risk. It is more complex than that. You have to evaluate your actual risks with ET (we are all different) and the known risks of HU, which is "A highly toxic medication with a low therapeutic index." (American Society of Health System Pharmacists). Your intuition that your body needs a break is something to pay attention to, but you have to make the decision based on an objective evaluation of what is in your best interests.
Here are a couple of resources to consider.
drugs.com/monograph/hydroxy...
statpearls.com/kb/viewartic...
youtube.com/watch?v=hbVr9u3...
Hope that helps.
Thank you so much. Very much appreciate your taking the time to reply.
Will have a chat with consultant before ( and if) I do anything.
That’s one for you and your doc to decide! Please don’t go by what other people do regardless of their outcome.
Thank you. I wouldn't dream of doing anything without my consultants say so. I was just wondering if it is possible to think that drug free is a possibility ,if only for a period of respite. 🥴
Hi Lynne, I wouldn't reccomend just stopping Hydrea as I know very well from experience that when suddenly stopped platelets seem to have a mind of their own. When i've had to stop taking it for a week at a time on a few occasions when my other blood counts have gone too low, platelets have without fail gone through the roof literally which makes you more higher risk to suffer a blood clot. If you're that unhappy taking it,talk with consultant about alternative meds. Do you mind me asking why your consultant as you taking 1500mg of Hydrea a day when your platelet are at 450? I take the same dose but I have a history of huge spikes in numbers then lows. Thank you. Atb, tina.🤗
Does anyone know whether having ginger is ok when taking asprin?
Asprin?
Newly diagnosed
Will I ever feel well again
