When diagnosed with PV 2 months ago my husband was told he wasn't that bad as it had been found early..we are now up to 4x500mg tablets day

[Headinthesand]

This seems a lot in view of what others are saying..no other treatment except aspirin. What do others think?

[karteeka]

hi headinthesand- typical doctors, a pill will fix it- rubbish. I have been treated for pvr 4 yrs now and have had it for years before I took action. I initially took a combination of hydrox and venasection but after taking only 2 tablets of hydrox I had a violent reaction so since then have been managed on venasection which is 4-8-12weekly depending on my blood results which at present are checked 4weekly. I also take daily low dose asprin and have a diet with no iron or vit c= vit c aids the uptake of iron. I am now chronically iron deficient and fatigue is a major issue, but I work and have a full life . I would get a second opinion as 2gm hydrox daily is a lot for "mild' pvr. good luck, ask questions and check out websites like the mpn voice out of the mayo clinic in the usa, leukaemia foundation , in Australia, they are great, research bsed and will give you facual information, , cheers karteeks

[Headinthesand in reply to karteeka]

Thank you..I am looking at mpn voice and gaining as much info as I can, unfortunately my other half has stuck his head in the sand and won't read any info on PV.physically he has had little reaction to the Hydera but mentally he really isn't coping with the illness at all

[karteeka in reply to Headinthesand]

hi head in the sand, your husbands reaction is ok, appropriate and even normal - I felt similary when I received the confirmation that I was jak2 pos- it took me months to come to terms with the fact that I had a cancer- by the way, cancer is just an abnormality in cells, and this one is one of the better ones to get if that is possible- be there for him, and let him come to terms and adjust to the change in his lifes journey and hope its as symptomless as possible. be patient and strong- karteeka

[Headinthesand in reply to karteeka]

Thank you

[Murchadhmor in reply to Headinthesand]

Hi Headinthesand. I was diagnosed 10 years ago. In that time the hydrea dosage has been varied up and down between 2 a day to 5. This disease varies and the treatment may need to vary from time to time. When I was diagnosed a senior nurse told me to go on the Internet and learn as much as I could so that I could stand up for myself and I am glad I took that advice. You need to be choosy - some of the American stuff can be way over the top. All the very best to you both.

[Headinthesand]

Thank you for your reply..he didn't go straight onto 4 pills. At diagnosis he was given 1 a day and each time we've gone for checkup (fortnightly ) it has increased by 1 so now on 4. Due back this week and I am really hoping he doesn't end up on 5. Physically not much reaction to Hydera but mentally he is really not coping with the diagnosis ,and each time the pills increase the worse he is.he won't even read anything associated with it.

[siblehed1]

Hi,

I had PV for eight years before it was diagnosed, suffering terrible 3-5 hour episodes of severe itching all over the body. As this coincided with the menopause, my GP at the time thought it was all part of the hormonal changes or side effects of the treatment for that. It was eventually diagnosed following a full blood count that the GP requested during investigation of possible arthritis. JAK-2 positive PCV was eventually diagnosed by bone marrow biopsy. Originally treated by venesection, and then Hydroxy - now on 2 x 500mg for 6 days a week and 1 x 500mg for one day a week, plus 75mg aspirin every day. The bloods have been well controlled on this dose for six years now. I do sometimes feel that the lack of diagnosis in those eight years put a lot of pressure on the circulation and general systems and must have taken a toll. Important, I think, to have a positive attitude and have as much information as possible. There is a good booklet on the MPDs by Leukaemia Research. Also Cancer Research UK has nurse-led e-mail question & answer service that can be useful for specific questions.

All the best,

siblehed1

[skodaguy]

I was diagnosed with PRV in 1993 and I didn't deal with it well. because I buried my emotions and just put my head down and plodded on I ended up having a breakdown 3 years later. Your husband needs to express his feelings and talk to someone he trusts but that may not be you as he may not want to burden you with his feelings. I later wrote it was like being told I had cancer, this was long before it was accepted it is a cancer. He needs to remember that most people do not go on to get the complications of PRV. Being told you have an incurable disease is hugely traumatic. I am a doctor and fully accept we get a bit blaise at times because for us it is an everyday event to tell someone that ranging from diabetes to cancer to hypertension. There isn't a pill for every ill. I am still working virtually full time but recognise my limitations but I am also still more active than most people of my age. eg did over 20 miles on my bike last weekend. Staying active matters. Sorry you have this problem. If there is a way the head of this site can give you my private e-mail so I can give you my phone number and you want to talk personally I am happy to do so

[Headinthesand in reply to skodaguy]

Thank you for your support. My husband does share how's he's feeling with me mostly and to the outside world it's business as usual..have enrolled him in a meditation/ yoga class which will hopefully help.also read good things about hemp oil, so going to check it with consultant when we next go.

[Aime]

Hi headinthesand, It is really hard when after you have had a load of scary tests, you are are told you have a blood cancer. I think it was the truth about my own mortality that scared me. My daughter had just found out she was pregnant and I was worried that I would not see or be with my new grandson for long. Then I slowly came out of "panic mode" and with the help of this forum and the MPD website, realised it was not doom and gloom for me but that I had to make the most of it because there was nothing I could do to change my illness and that most people with PV lead a long life. I found it difficult to speak to my family as I did not want to worry them but found out they were worrying anyway, so we then had a good long chat! kind regards Aime

[Kisses]

Hi aime so glad you were able to talk with your family I asked my husband to share his fears and tears with me and not to shut me out I still think sometimes he's holding something back he has primary milofibrosis and is about to start on ruxolinitib tomorrow the side effects are terrible so we are going in to this with a positive attitude and lots of love and prayers. Love to you also and your family kisses wife. Eve .

[Sintra]

Hi head in the sand. I'M on 3 per day, but it doesn't mean your husband has always to stay on this dose. Suppose he takes HU? HU is a slow working med and maybe when all the Counts are in the normal range it will be less. At least that's how it was for me.

[Headinthesand]

Thx. This weeks visit has resulted in staying on the same dose as before (4) of Hydera and a month til the next visit instead of 2 weeks so he was a bit happier