Polycythemia

Hi everyone, I was diagnosed with PV last November after having a TIA the previous month. On Hydroxycarbamide daily and other tablets for high blood pressure. Having a few issues with fatigue, going upstairs is like climbing a mountain just constantly having no energy, dark lines have appeared on my finger nails, feel dizzy, nauseous, some tingling and itchy/sore to touch toes, blind spots/blurred vision. Does anyone else have these symptoms. Do they eventually go away with time or medication as I always hope that tomorrow I might feel better and be able to get out the house as at the moment I can’t walk very far as I have no energy in my legs, even holding a phone takes too much effort.Any advice would be appreciated, thank you.

[saltmarsh]

Wish I could help but your symptoms sound like they warrant a visit with your doctor who is, hopefully, an MPN specialist.

[Hidden in reply to saltmarsh]

I have contacted my nurse and have an appointment today with haematologist so hopefully I will get some reassurance that things will improve with time

[hunter5582]

The symptoms you describe sound like a possible mix of PV symptoms and hydroxycarbamide adverse effects. There is overlap for some symptoms like fatigue. Sometimes the timing of when the symptom began is the only clue as to which is which.

The tingling in the toes can occur with either PV or as HU adverse effect. If it is the latter, this is one of the issues that warrants a prompt call to the prescriber. medlineplus.gov/druginfo/me...

Some of these symptoms do get better with treatment. Some do not. Sometimes the medications can cause new symptoms. Sometimes we adjust to the medications. Sometimes we are not able to tolerate the medications. The key to managing a MPN is close collaboration with a MPN Specialist with the specific expertise that we need.

Wishing you all the best getting this sorted out.

[Hidden in reply to hunter5582]

Thank you for taking the time to reply, you have just gave me a bit of hope that there’s light at the end of the tunnel and things will improve. I spoke to my nurse and have an appointment with haematologist today so hopefully they can advise me on the way forward

[monarch5000]

What a terrible predicament to be in - you need help, but are too weak to pursue learning where to go to find competent help and how to get there. Your TIA and your other symptoms are consistent with extra thick blood and a high volume of blood. If both are corrected by a combination of venesections and a drug like Pegasys interferon then symptoms should deminish in intensity. But we cannot know how aggressive and intense your PV disease currently is without knowing your age, current and past blood counts, bone marrow biopsy report findings and history and frequency of venesections.

[Hidden in reply to monarch5000]

Have been on Hydroxycarbamide from early December, saw the haematologist today and am taking a fortnight break to see if symptoms persist or get better, gave me information on Jakafi to look through in the meantime. Thank you for your reply

[Anouchka]

Hunter has got it spot on. I had some of the same in differing degrees when first diagnosed with PV. I was changed to Jakafi meds after several months - some of the side effects improved, changed or are still there… This is really best taken up with your specialist as we are all different and react or digest differently. Best of luck!

[Hidden in reply to Anouchka]

Thank you for your reply. I am on a break for a fortnight from Hydroxycarbamide and have been given information on Jakafi so I will wait and see what happens

[ainslie]

it might be you will feel better by adjusting your treatment, you don’t mention what your counts are, you might be overdosed or under dosed or you might do better on a different drug, ideally you should try to see a MPN specialist to get direction. If your symptoms are MPN related there is a good chance you will feel better by tweaking the treatment

[Hidden in reply to ainslie]

saw the haematologist today, taking a break from Hydroxycarbamide for a fortnight to see if anything changes, they gave me information on Jakafi. Will see how things go, thanks for your reply

[Meatloaf9]

Hi Jemm,

You are taking a 2 wk break from HU so you should get some idea if your symptoms are from the HU or just the PV. 2 wks may not be enough time. We are all truly different in our symptoms of PV and reactions to medication, I think if you get enough responses you will see that. I have PV now, started as ET. At one time or another I have probably had all of the symptoms you mentioned but they were all temporary and at present time I have none. I take HU and have for the last 30 months, alternate daily 1-2-1-2 etc. My doseage has been changed several times, it takes me 2 to 4 weeks to see changes in blood counts. I do not have any symptoms that I can relate to the taking of HU as far as time after taking the drug. My blood counts are all within normal and my mpn specialist recommends I continue the HU, I am 74. I do not need phlebotomies, only had one at the beginning of treatment. HU does not work for everyone but for me it has worked perfectly thus far. My AB when I started HU 30 months ago was 50% and when it was checked 2 weeks ago it was 19.7, I suppose it is time for it to start back up. I have never felt any different depending on the AB. I don't have the energy or stamina that I had 7 years ago but I am a lot older now. My mpn specialist says that HU gets a bad rap but he believes it is an excellent medication, I guess for some but not all. I may still ask to switch to an INF for the possible disease modifying aspect, when I asked him if any evidence that I could live even one day longer by switching to INF he said Not at present. This is just my experience with PV and HU so far. Best to you always.

[Hidden in reply to Meatloaf9]

Thank you for your reply. Hopefully in this time we will be able to see what’s going on as my blood counts are near normal so the HU has done its job. The symptoms I have are just the same as before I started treatment, the only difference is the dark lines on my nails which the Doctor hadn’t came across before. Some of my symptoms they think aren’t related so I have to see my GP and can’t get an appointment until mid February. As I am new to all this I will have to go with the flow as they say and hope for the best

[Meatloaf9]

I have had dark nails on my toes for about 2 years now, I just don't look at them. Best