I'm new to PV and looking for group support
Posted , 3 users are following.
Hi, I'm 56 (yesterday) and was diagnosed in July after having a funny turn at work and I was taken to hospital with a suspected TIA. That is when I found out that I had Jak 2 PV. My hb was 23 and my haematocrit was 72 on admittance to hospital (currently down to 14 & 47). I researched my condition and I could tick off nearly every symptom on the list...all of which I could allocate to my age, my migraines and the menopause. I'm currently having venisections every fortnight after having 6 weekly unit removed. However, I no longer feel as great. :-( I often have no energy at all, struggle to motivate myself and maintain concentration on a task at work. I get quite a lot of bone pain and currently I'm not sleeping very well either. I have found that now the weather is cooling that I am no longer getting burning sensations in my body and feet, which is good. I did think that by now my condition would have been regulated and this being so, that I would not be suffering any symptoms unless my levels were on the up. It's all fair and well having general information about the condition available to read online, but it's not the same as being able to speak to other sufferers and seeing as the condition is quite rare, I don't know anyone else who has it. I just wanted to know from long suffering PV patients if things actually do settle down to near pre PV? Also, my consultant informed me that I am at risk of DVT's, does this have an impact on travelling by air and travel insurance?
0 likes, 5 replies
keith28441 joycem
Posted
Hello Joycem
I found that during the first couple of months of treatment that my symptoms became worse before they got better. I was suffering with migraines with aura once, sometimes twice a day and some of my other symptoms felt worse particularly the dizzy spells, tinnitus and fatigue. Like you my concentration levels were non-existent. However, over time they have become much better, the last time I had a headache let alone a migraine was over 5 months ago, I no longer feel out of breath and the dizzy spells are only occasional. I still suffer from fatigue and tinnitus but like others in this forum, this is something I have learnt to live with. Ferritin (iron) levels are often low in people with primary PRV and this doesn’t help with the fatigue. Polycythaemia affects people in different ways and no two people are the same in terms of both symptoms and response to treatment, so I can only tell you of my experience. Hopefully though, you should start feeling some benefits from the treatment, it just takes a little time. I am considered to be of high risk of DVT/clotting and in fact did suffer from multiple pulmonary embolisms back in 2008. This has not stopped me from flying or finding travel insurance. I have to pay a small premium for having Polycythaemia (approximately an extra £53.00 on top of my base insurance) but it’s not extortionate. If you have recently had a TIA, this will affect your current insurance policy and for the first one or two years it may have a greater bearing than the Polycythaemia itself. There are insurance companies that specialise in pre-existing medical conditions. If you live in the UK then it’s worth giving Insure & Go a call or Columbus Insurance. I have found both these companies to be pretty good. There are other companies out there as well so shop around and find the best cover for you.
Hope this helps
Kind regards
Keith
joycem keith28441
Posted
Thank you for your response, it makes me feel a little more positive about what the future with PV holds.
Kind regards, Joyce
Chippenham joycem
Posted
Hi Joycem -
Your symptoms sound pretty similar to mine. I was diagnosed about two and a half years ago when I was 56 also. I am male and an American in the U.S. My Hematocrit was not as high as yours, but was well above the target range. My initial Hematologist told me to come back in a year and he would assess me again, he called it "watchful waiting" which was not acceptable to me ( I could barely work, and even had trouble walking I was so dizzy and exhausted all the time). I found a specialist at University of Washington/Seattle Cancer Care Alliance who took the disease seriously, and immediately scheduled me for venesections. After a couple of those, and regular monitoring of my levels, he put me on HydroxyUrea (I think they call it HydroxyCarbamide in the UK, or sometimes just Hydrea). After a while he increased the dose, so I am now on 1000mg/day. I have not had any venesections in about 2 years. Most of my symptoms have been helped substantially, but the fatigue comes back in the evening, as do headaches. The dizziness has gone away, as has the burning and itching skin. I feel much better than I used to , and now walk at least 5 miles every day (rain or shine), whereas I could barely move two years ago. DVTs are a risk, so if you fly long distances or sit in a car for long periods, you may want to get some of those special socks that help prevent blood clots in the legs. If you are on the train, make sure to get up and stretch regularly. Good luck
joycem Chippenham
Posted
Hi Chippenham,
Thank you for your words of encouragement. I've not been offered medication at the present time and don't see my consultant again until January. Hopefully by then things might be more livable and medication won't need to be a consideration. You must be lucky enough to be retired with all your walking. I do walk when I can, but not to your extent.
Keep well, Joyce
Chippenham joycem
Posted
Joyce -
I'm not retired, I work from 7:30 to 5:30 everyday, and take an hour in the middle of the day when I walk instead of eating lunch. If I can't get away for an hour, then I finish my walking after work. I saw a young woman with PV who runs ultra-marathons speak at a seminar and it inspired me to get out and walk everyday. It has improved my energy and mobility.