Diagnosed late 2018 soon after started on Hydroxycarbamide + Rivaroxyban 10mg daily. In the last year, Hydroxycarbamide has been increased slowly every few months. I am now taking 2000mg 4 days a week and 1500mg on 3 days a week because my platelet score is 640.
I am feeling really poorly on this level of chemo. Absolutely no energy, quality of life is dreadful and I have to make a massive effort to actually do anything! My hospital are looking into reducing the Hydroxycarbamide - which I am hoping for as the side effects of the medication are far worse than the condition itself.
Just wondering if anyone else has experienced this reaction and if so, has any tips/thoughts. I am a 79yr old lady with no other medical conditions so don't take any other medication.
Thank you for reading this and hope to see a reply whenever you may have time to respond.
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RedEye21
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You and I are in the same boat insofar as age, no other meds and taking HU - although my dosage is much lower - alternate 500 and 1000 mg. A few years ago I was put on a much higher dosage by my now former hematologist. I couldn't tolerate that and after a few other problems I switched to a new doctor who reduced my dosage and eliminated the phlebotomies. My numbers have been stable since. As many on this forum have posted, all of us handle this disease and the treatments differently. I think you should discuss this with your MPN specialist because what you're going through is simply unacceptable. Good luck going forward. Please be a strong advocate for yourself because there is no reason why you should be feeling this poorly. Best wishes
Gosh that's a great reply! Can't thank u enough. Thank u also for 'getting' what I was saying. Means a lot and gives me confidence to challenge issues.
Just had one other thought and I preface it by saying this is what works for me, for now. I had a bout of iron deficiency anemia a few years ago which left me feeling pretty bad. My new doctor ran a more comprehensive panel of bloodwork - which he now does every 2 months - and put me on 65mg of iron daily. The improvement was rapid. After a month or two he stopped it but I have found that I need them on occasion and just started taking one on Tuesday and one on Thursday (best to skip a day with iron). I am active with walking, biking, kayaking and swimming so I know when I'm starting to feel like I need the boost.
Seems silly but it works for me. I will probably stop taking it in a week or two.
So my last suggestion is that you get a comprehensive panel of bloodwork before making any decisions but also be open to trying some new approach. Again, trust me, there is a path forward for you.
At that level of HU dosing adverse effects are common. It sounds like the adverse effects have reached to point that they are not tolerable. In addition, it appears you are refractory to HU if you need that high of a dose. The good news is that there are other treatment options for PV that may work better for you.
Jakavi and Besremi are both approved for use for people with PV. Either one of these medication may work much better for you. Besremi has worked much better for me than HU, both more effective and much easier to tolerate.
As others have noted, we are all different in how our MPN presents and in how we respond to treatments. It is important to consult with a hematologist who is an MPN Specialist when managing a MPN. Suggest that you review your situation with a MPN Specialist who can best advise on your treatment options. mpnforum.com/tsr-the-list/
Thank you also for your wonderful reply. It means so much - esp as this is the first time I have spoken outloud about my horrid problems. It is good to have support from similar sufferers.
Assertive patients receive higher quality care. Passive patients do not. Those who suffer in silence will only continue to suffer. There is no reason for you to be experiencing horrid problems. There are other options for you that may work way better.
I felt on higher levels of Hydroxycarbamide that I was living no life at all, I think I am sensitive to slight changes my platelets have not been above 750 .000 but my symptoms at that level were many and varied .
My response to starting 500 a day was dramatic platelets wise . But dose was increased and life became very dull and limited too dizzy too fatigued to function .
I have reduced Hydroxycarbamide twice in last few months with haematologist blessing and at least am able to live a bit more and only slight rise in platelets . So hope I can remain on lower dose .
I wish you luck in negotiating reduction Hydroxycarbamide or changing medication. Sounds as though you were generally well prior to this and fortunate to not be on any other medication. So hang onto that thought. L
I take hydroxycarbamide 1000mg per day I opted to take them before I go to bed then I can function during the day xx I am 48 years old. I have polycemia vera ruba.
hi redeye22, sounds like you are on a very similar dosage as me on the hydroxi which has been gradually increased over several months, I too am suffering with extreme fatigue and some tasks which I wouldn’t have thought twice about doing are now very difficult. I have been tested for b12 levels to see if that was part of the issue but they are fine.
Totally agree with the quality of life comment. I’m still working so once I get to around 2pm I’m more or less done.
I do have type 2 diabetes, now returned after 18 months remission.
Another visit to GP scheduled and next review with Haemo in a month when I will raise again to see if any way forward, will update then,
In meantime keep chin up and see if things improve.
Very sorry to hear about your troubles and I can completely empathize!
I am 41, I have PV and ET.
I was put on a 1000mg per day. I could not function at all. I had a hard time breathing , couldn't even walk to a kitchen. It was horrendous. I have asked my hematologist to reduce the dose, as my quality of life was non existant. I am now on 500 a day with my platelets around 600.
I am suspecting my hematologist will want to increase the dose, but personally I don't think I can go back to that state. I am back to living my life, more or less, I can get out of the house!
Of course, it is always a personal choice and you need to have a good MPN specialist to advise you.
As Hunter mentioned, there are other alternatives as well. Disappointingly, Interferon didn't work for me, but we are all different.
I take my HU before going to bed, which allows me to sleep through most of the side effects.
I am finding I have to be very much a participant in the decisions about my treatment. Don't be afraid to ask your MPN specialist questions and to explain options to you. This group has helped me a lot with information, so I can be prepared for my discussions.
Good luck and I hope you find a treatment solution that works for you.
Hi, initially, after PV diagnosis, I was prescribed Hydroxy. Immediately , awful and many side effects including knee and foot grinding pain, lock-jaw, distorted focus. mouth ulcers , brain fuzz. Eventually, phoned Haema said was coming off the tablets. Wise Haema said go ahead but symptoms of PV will return. I had months of bliss and a wonderful summer but eventually had to accept medication, Ruxolitinib. Still have milder feet and knee issues and minor visual issues but nothing like the awful side-effects with Hydroxy. Don’t think anything could persuade me back to it.
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PV Specialist in the County Durham area of the UK
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