Has anyone been diagnosed with Polycythemia Vera over 60 years old and Not taking medication despite medical advise?

[Sunnylesser]

Wondering how critical it is to start medication hydrea Right away or could I do phlebotomy first and see how counts come down. I am 70 and I know high risk but Not ready to start a chemo drug . Thank you all for your input and expertise ! It’s appreciated.

[Mostew]

Not PV but know how you feel .I’ve got JAK positive and am 65 . Platelets gone up and still reluctant to take HU . Keep intending to . Got the prescription but not taken...

[Otterfield]

Hydroxycarbamide has side effects for some people but certainly not for everyone. Yes it is classed as chemotherapy but it's not in the same league as the really scary stuff that people have for other cancers. Apart from the odd mouth ulcer I wouldn't have known I was on it.If you try it, you can always change your mind later it it doesn't suit you but there Is no need to be put off by the word chemotherapy.

[ChillyAsh34 in reply to Otterfield]

I am 70 and been on hydroxycarbamide for 10 weeks had a few cold sores on lips at first ,but no other side effects I feel good

[lizk1993]

Hi there,

just thought I would say that not everyone over 60 is on Hydroxy. I'm 63 and haven't yet been advised to take it, though it has been discussed. One consultant said in January this year he'd like me to take it. At my April appointment a different consultant said he didn't think it was necessary. I have in the past had a heart attack and subsequent bypass. I guess what I'm saying is listen to your doc, ask the reasons for why they want you to take it. Once you have all the information, you can make up your mind. Good luck. Liz

[Sunnylesser]

Thank you all for your reply! It so wonderful to know you are not alone .I am just getting use to this site and not positive how to answer people so hope this goes through. Your time and concern is appreciated!

Thank you all

Sunny Lesser

[spikesnana]

Ive been on Hydrea for 10 years. I started with phelbodomy first but was going so often was advised to take pills. Not too many side effects. Better than being stuck with the big needle so often

[margaritampn]

I started Hydrea as soon as I found out about my blood disorder. I am Jak2+. 500mg for a month then increased to 1000mg daily for the next 3 months. Now I am completely off the drug and have been off for about a month now.

My hematologist is trying to see if I can go drug free since we are planning to get pregnant this year. If my platelets stay below 50”k (currently at 300k), then we will try to stay away from Hydrea.

Btw, I’m 35 and learned about my condition just about 6 months ago.

[MPNBlog in reply to margaritampn]

Hi margaritampn. You are very young to be on Hydrea. Many other posts on this site will give information about that. You ought to have a normal lifespan so that's a long time on such a drug. There are other options such as Pegylated inerferon, (especially but not only) if you want to get pregnant. I do hope you are seeing an MPN specialist, not just a regular haematologist. Ask lots of questions and be proactive. I'm not sure how long you need to be off the Hydrea before trying to get pregnant, or if it makes any difference how long you have been on it. But that's a very important question to ask as the drug has potentially teratogenic effects on the foetus (ie cause birth defects). I just googled and one site that looks reputable said for a minimum of 6 months after taking Hydrea you should continue with birth control. mottchildren.org/health-lib... "If you are a woman, keep using birth control for at least 6 months after your last dose of hydroxyurea." I don't want to cause you any alarm, but you need to be very well informed on this topic. There are other threads on this site on this topic that might be useful for you too. Take care and best wishes.

[Hidden]

I have been advised to - and have letter (also sent to my GP) from my specialist saying that she advised me to, but I have chosen not to. We both agreed that it was to save her proverbial should what I was doing go per shaped.It was the toxicity of it all that really put me off - what was it doing elsewhere, even places which had not been looked at that worried me. As the doctor said - these treatments are toxic. But what did that mean?? I guess different things for different folks - but I could not take on board this extra. I agreed to phlebotomies even with some doubts there (the body thought I was bleeding out for some unknown reason - therefore, what was it going to do?? - make more blood!!! - still not figured that one). Anyway it seemed to be the least of my concerns at that point. I could buy time with it and it was not going to add toxicity.

I already had diabetes and was doing research on that and found Keto way of eating was sensible in itself (ditching carbs) and that made the transition to any fasting I wanted to do really easy (there was not carbs withdrawal I had to go through). Fasting helped everything - diabetes and PV numbers. BUT, I also have PTSD and with COVID coming along that threw fasting up the wall (I guess there was some survival mechanism kicking in - get food while you can).

A few months ago I found fermented foods and drink and these seem to be giving me other options (apart from the fasting). My numbers are staying better, the itches after showers have gone (!!!!!!) (I used to sit in a deep hot (40C) bath and that got rid of them - will still do that, but for other reasons - just waiting to check that they truly have gone), my rashes have gone, my fingernails are thicker, hugely more energy, much clearer thinking, much happier. So even if I find I still need phlebotomies just as often these benefits are going to keep me consuming fermented foods. I hve no idea which is better than the other, but all add different things to the mix. The help our gut microbiom and reduce inflammation (which is always a help to us) and there appears to be quite a lot of research coming out about COVID-19 and those with a healthy gut microbiom are the ones doing the best.

If I was starting out now I would opt firstly for milk kefir (buy, but better made yourself with grains - once you have the grains they keep growing and you have them forever), kombucha (I do not do the fancy 2nd ferment - still need that energy for other things I have to catch up on), and fermented veges - perhaps starting with gingered carrots (like a carrot salad - but the carbs have been fermented out - great for me with diabetes, can eat carrots again!) and working your way to other things. I did this very quickly as I found I loved them so much.

Overseas son has now started down this path - he has a rule about forgetting what the first mouthful of anything tastes like, you have to train your mouth! So he does not make judgment until the 3rd or 4th time around. Did not like 1 and 2 - but now craves the stuff and his health is way going for it. He phones me most days with such delight in his voice.

Very long - but I have found so much, and am enjoying living again. I had CFS for the past 40 years or so, unable to hold down a job, so you can just imagine - to have energy in itself is mind blowing for me. I do not know if it is going to help me long term avoid the toxins, but I aim on giving it a damn good go! Also the PTSD effects have abated with this new knowledge about ferments:

dailymail.co.uk/sciencetech...

[Canbrit]

My husband has had diagnosed PV for over 10 years. After a small stroke his new doctor pushed him to take hydroxyurea… simply because it was protocol. The stroke wasn’t related to PV and we knew why he had the stroke yet the Hemotologist get pushing hydroxyurea. He respectfully declined. It’s been 18 months and he feels amazing by eating healthier and exercising daily. He was diagnose with PV at age 46 JAK2 positive.

[Phantasia]

From my own experience I wished I'd never started taking hydroxyurea. Diagnosed 9yrs ago with triple negative ET. Started HU 7 months ago as I had turned 60. Now dealing with uncomfortable and distressing peripheral neuropathy. Haemo has taken me off the medication and is hopeful the PN will go away with time. Didn't help much with platelets reduction anyway. Most people seem to tolerate it well though. I was just unlucky.