I'm 41 years old and about 18 months ago I was diagnosed with Jak2 mutation. I also have low iron and need iron infusions about once a year. Last year was a complete nightmare. I had so many vene sections and ended up in hospital for a bleeding ulcer and lost alot of blood. The vene sections didn't seem to bring my haemoglobin levels down amongst other things like my platelet count and thickness of my blood.
My haemotologist recently left; and the new haemotologist put me on hydrea a week ago. I'm not coping on it well and I'm not sure if it's because of this or the new job I started a month ago which is very stressful. I am on edge and don't sleep well, I have no appetite and my legs are so itchy they look like they're covered in mosquito bites.
I feel like I'm not living in my own body and it's making me feel awful. I'm constantly exhausted and don't wake up feeling refreshed in the morning.
Does anyone experience these symptoms when first going on hydrea and if so, do they eventually subside?
Thanks.
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Deya08
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hi there. I was diagnosed with E.T. last month and have been taking hydroxycarbimine daily since. To date I have had no side effects🤞 Wishing you all the best
hello Dey08, it sounds like you have had and still have, a lot to cope with, starting a new job can be very stressful, but you are also having to cope with starting Hydroxycarbamide, which is also very stressful. It would be advisable to contact your haematologist about your itchy legs, one of the less common side effects of Hydroxycarbamide is itching and skin inflammation, so the Hydroxycarbamide could be the cause.
It might also help to talk to your general doctor about feeling on edge and not sleeping very well, perhaps they can advise you on some self help therapies to manage this.
It sounds like you have had a lot to deal with. It is a lot to make sense of. It is much more complicated when you have a MPN. MPNs are rare disorders and many doctors know little about them. Many hematologists rarely see MPN cases and do not have much experience with them. That is why it is so important to consult with a MPN Specialist. It is worth travelling to get a second opinion if there is not one near you. Here is a list that includes MPN Specialists in Australia. mpnforum.com/list-hem./
Venesections are standard treatment for PV and intended to lower red cell mass. Venesections do not control platelet count, rather they can increase thrombocytosis. Note that it is intended that your iron levels should be lowered significantly with repeated venesections. Iron is needed to make HGB/RBCs. Depriving the body of iron reduces erythrocytosis. A few things to note include people with PV are often iron deficient and any form of bleeding (venesections included) will further reduce iron levels. Chronic internal bleeding is one cause of anemia. You case has some complexity that needs review by a MPN expert care team who can advise you on these issues.
There are multiple treatment options for PV when venesections alone are not enough. These include hydrea (AKA hydroxycarbamide/hydroxyurea - HU), the PEGylated interferons (Pegasys or Besremi) and Jakafi (ruxolitinib). Your care team should have already reviewed all of your options with you. Each of these choice has a specific risk/benefit profile and individual case factors need to be taken into account. Generally speaking, one of the interferons is preferred for younger people (Age<60), particularly people of childbearing years. Your care team will have advised you about the importance of avoiding pregnancy while on HU.
We each respond differently to each of the medication choices. Some tolerate HU and benefit from it. Other cannot. I am one of the latter. I experienced toxicity even at low doses and the adverse effects did not resolve until I discontinued the HU. You will hear from other that they do fine on HU with minimal adverse effects or adverse effects that fade with time.
The itching is a common PV symptom (and other MPNs) that can result from the JAK2 mutation or from the medications used to treat it. Sometimes timing is the only way to sort out what is causing the problem. Note that Jakafi is known to be particularly effective when the itching is caused by the PV.
Since you are currently trying HU, there is some information to be aware of. Here are some resource you may find helpful
Thank you all for your responses. I had to take the day off work yesterday as I was feeling so rundown. My new boss said I can take as much time off as I need to but at the same time the demands of this new role are a massive learning curve for me.
I will be 41 in a few days and I was diagnosed about 2 years ago. I 100% would talk to them about interferon. You are too young for HU in my opinion. To get your counts down temporarily I would do it. I know you probably feel the same way I do, I would like at least another 35 years if possible on this earth!! I would ask about Besremi. I have not had your experience as I only need phlebotomy every 5-6mos and since I was diagnosed I haven’t had any symptoms. And I just started Besremi and numbers are looking better. I had issues mostly with platelets and wbcs just recently. I have some suggestions for the itching that may help. Cool showers, avoid hot water. There are a few products that are great for itching, cerave anti- itch, dermaleve which is awesome but you will have to order it. There are lots of prescriptions that can help with itching that I prescribe all the time in my clinic. But these are a few OTC items. You can even throw the cream in the fridge and apply it cold that can help. Avoid long showers too, water is drying. Anti-histamines of course and adding something like Pepcid if you can take it. It can block type 2 histamine. So you could take both a type 1 & type 2 blockers but ask your doctor first.
I had to start a sleeping medication as soon as I was diagnosed. I was so upset and scared. I have a little girl to take care of, a job, a husband, etc!!! I just now not taking it every night. You need to tell your doctor. It is 100% understandable. Hope this helps!
I use Hydrea too and I recognize the fatigue. It comes and goes, sometimes it’s 3 days in a row and then I feel fine again.
When I started I experienced more side effects, but I felt better when I started taking the Hydrea just before bed in the evening. Maybe it helps you too.
Skin reactions to hydrea are unfortunately common. I have JAK2+ PV and was on HU for about 5 years, starting at 500 mg/day; when my dose was increased to 1000 mg/day, I developed serious skin reactions. I returned to the lower dose, but it no longer did much for me, and I have been on Jakafi for the past six months.
hi, i was diagnosed 10 years ago with pv. i went every week for the first 5 weeks to have a unit of blood removed, then put on an aspirin tablet each day. Then put on 500mg of hydroycarbsmide . now 10 years later I take 3 capsules per day. I tolerate hydrea well enough so far.
when I first met the consultant, I asked him if it was ok to take vitamins, he said it was ok as long as they don't contain IRON.
I get itching every so often, I think red foods sometimes causes it. Red apples, red peppers etc. I use anti itch cream also take cetirizine, (one a day). or a similar tablet that's taken 4 times a day. These meds are antihistamines.
I take zopiclone at night to help with sleep. Maybe the stress of the new job is making the condition unsettled. If I have sleep that isn't restorative I fine it hard at work the next day.
I hope things work out for you and some of the remedy's I try may help.
Hi, I have MPD and Jak2 mutation, I also take Hydrea . The dosage changes every 3 mo. between 500 mg -1000 mg. depending on my platelet count. I take Hydrea at night since it makes me feel tired, but then, the greatest side effect I have is fatigue . I have had occasional bouts of nausea but nothing really serious. I was prescribed Rx to take when needed. I did get what was called atypical dermatitis on my legs that have become a permanent mark. It doesn't itch, just a light reddish marking.
It really sounds like you need to discuss with your Dr. the side effects your having with the medication, the stress that it is causing in both your personal and professional life. The stress can just amplify the problem.
hi Deya08 - I live in Ireland and was diagnosed 4 years ago. I am on hydrea fr about 2 years now - 1000 a day - it has controlled my blood counts and I have managed to Live a very normal life on it. The only pv symptom I suffer from is itchy skin - this comes and goes - I take 180mg of telfast daily which is an antihistamine and a low dose of amitripline. Whereas I hate taking any type of drug the hydrea is doing its job and I have avoided a phlebotomy since I started taking it. I also have a very stressful job and work full time so everything is possible. Apart from my daily pill popping I try to forget I have this condition and live a very normal life. Best of luck xxx
Since my initial post I have met with my haemotologist last week and again this week. Since going on hydrea three weeks ago my haemoglobin hasn't come down much but platelets have and are in the 300s. They want to do start doing weekly vene sections until my red cells come down and hopefully my haemoglobin comes down too. I had a bunch of vene sections last year and they barely made a difference but maybe with the hydrea they will work. Otherwise, the haemotologist said she'll put me on Pegasus interferon and hydrea together. I'm really feeling unwell. I can't work atm as I feel so sluggish, tired and nauseas.
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