Newly diagnosed Polycythemia Vera

[Kwinzola]

Hi everybody,

I'm Ciaran & I have been very recently diagnosed Polycythaemia Vera.

As you're probably aware, the early stages of research are quite daunting &, whilst my haematologist is recommending Hydroxycarbamide or Peginterferon alfa 2a to rapidly reduce my platelet count & get my high stats under control I am looking for advice on natural / holistic therapies, nutrition & supplementation.

I've had a venesection to date & I'm due another this week but I'm physically fit & feeling I should attempt a more natural course of action in the short term to see if there's a way to manage my condition organically.

My only symptoms to date are itching & red face although, if I'm honest, fatigue can probably be added.

I'd love to hear from any & all who are managing with a different outlook to pharmaceuticals or can share contacts for specialist in natural therapy, nutrition & supplementation.

Also, daily / weekly routine tips wouldn't go amiss.

Thanks

Ciaran

[hunter5582]

Hello and welcome. Glad you found your way here.

I have been managing a MPN for over 30 years. It was originally ET but progressed to PV about 11 years ago. I have found that combining Western medicine with complementary health interventions to be the most effective approach. I tried going without cytoreductive medications and using venesection-only after hydroxyurea was ineffective and intolerable. Unfortunately, the symptoms from the long-term venesection-induced iron deficiency were worse than the PV symptoms. This lead to my opting for the interferons. I started on Pegasys then switched to Besremi. My quality of life has improved using the interferons. I feel better now than I did 10 years ago. I am opting for the low and slow approach to the interferons. I gradually increased to my maximum tolerable dose of 175mcg Besremi, which is a very low dose. This dose is effective at maintaining a hematologic response, though I do need a venesection about once/year. My JAK2 allele burden has reduced from 38% to 10%. which is very good news.

I have found that there are complementary health interventions that help to manage the MPN and other symptoms. I experience systemic inflammation as a result of the JAk2 mutation along with a variety of inflammatory condition including osteoarthritis/tendonitis. Under the direction of an Integrative Medicine doctor, I am using a combination of curcumin, L-Glutathione, and a Pro-resolving Mediator. I also (mostly) follow a Mediterranean diet. In addition, I practice Qigong to support health. These interventions have been very effective and the anti-inflammatory regimen has been more effective than any NSAID I ever took.

Wishing you all the best and success moving forward.

[william-Indo]

Welcome to the club.

All information, advice etc. you need could be find at hunter's posted in this forum.

Do not to worry about your PV, just enjoy your life.

Cheers

[ainslie]

the bottom line is you can’t manage the PV organically, organic approach will help your general health, a healthy lifestyle including plenty exercise will help reduce thrombotic risk which is important with MPN. The minimum you should do medically is keep Hct below 45 for male and probably 43 for female by venisecting and probably take aspirin. Meds maybe needed but without seeing all your counts and other risk factors it’s hard to give an opinion, we are of course not docs, it would also be interesting to know why your doc is suggesting meds at this stage. I wouldn’t be scared of meds, MPN are powerful diseases and may need powerful intervention. Certain drugs ie Interferons or Ruxolitinib may for some reduce allele burden which may be important. Although some do fine on venisection for decades it will do nothing to slow progression whereas some meds might.

When I was diagnosed 14 years ago I was like you re trying the organic route , it probably helped my general health but made no difference to my PV, my counts went on rising. After 7 years of that regime I started on Ruxolitinib, itching gone, all counts normal and allegedly my allele burden is now 1.08%, I could not tolerate Pegasys but many do just as well on it.

When diagnosed it’s a shock, but try not to panic and over react, the main things are to control Hct immediately and probably take aspirin and make sure you are safe. Then if you have no other risk factors take your time to research and consult. It’s a marathon not a sprint. You will get used to it and in a way your quite fortunate that it’s likely in the reasonable future there will be better meds and maybe a cure. I hope that helps.

[yibberat]

Hi Ciaran

I'm in the same boat as you. Just diagnosed with PV a couple weeks ago. No specific symptoms at all - though I will agree that 'selective lethargy' ('fatigue' really doesn't seem as applicable) has been an issue with me for years. I was diagnosed because a nosebleed lasted 12 hours and the blood count showed polycythemia not anemia. Had a stroke 4+ years ago - but it was almost entirely resolved in the ER and no diagnosis of anything though I have been on aspirin since then.

Just had the second blood draw and no Hct response. Still over 70%. My doctor is going to put me on hydroxyurea at year end. My non-pharma approach is going to be 'fasting' (not totally strict - water + a couple cups of veggie soup per day). 3-5 days at a time to see whether autophagy and HGH/stem cell activation can work.

Good luck to you

[ainslie in reply to yibberat]

It’s really important you keep venisecting very frequently until your Hct is below 45 or 43, especially as you’ve had a stroke in the past and 70 is very high for Hct

I read your plan re fasting and increasing HGH, that may possibly be a good thing to do for non MPN people but I really don’t think it’s going to help your MPN, in fact I would probably advise to be very careful, if indeed you manage to increase HGH it will make your Hct rise even faster, I know that because I tried HGH injections and within a few weeks my Hct rose very quickly.

Raising HGH may have benefits but I wouldn’t tinker with it unless your counts are very controlled with meds and even then be careful and keep checking your Hct and Hgb

[gvibes in reply to yibberat]

Hi yibberat,

I reiterate what ainslie said. 70% hematocrit is a really high number. I had 70% hematocrit at diagnosis and had 8 venesections in 2 weeks to bring it to 45%. At one of the venesections, they had trouble drawing blood because the blood was too thick. I was pretty casual at the time and as I learned more about the disease, I kind of feel I was lucky at the beginning. Later on my doctor told me he considered hospitalizing me at this point.

The venesections will reduce red cell mass and hematocrit as they mine out the red cells - you just need to do more of them. My opinion is you should talk to your doctor about taking more immediate action to reduce hematocrit.

take care,

[yibberat in reply to gvibes]

Thank you gvibes and ainslie. I am going to head to the Blood Lab today and get those Hcrit, Hgb, and Ferritin levels checked. The doctor has ordered those tests anyway to be done as part of monitoring progress of every blood draw so it is info that can be helpful in talking to her later and figuring out where and how quickly to go from here.

It's difficult to get serious about a disease where I have no real symptoms - except I guess sudden death. [/morbid laugh]. But I can't tell you both how much I appreciate your response and a forum like this. It is even more difficult for someone else to get serious about a disease like PV that doesn't seem to exist and has no symptoms. So support networks also have to found.

[ainslie in reply to yibberat]

I’m not trying to worry you but you should get serious about it, the biggest cause of death with PV is from thrombotic issues, great you don’t have symptoms but that doesn’t make you safe, having Hct at 42-45 instead of 70 makes you dramatically safer, I am amazed your doc isn’t venisecting you every few days, he/she should be.

[yibberat in reply to ainslie]

Thank you ainslie. I did get a new blood count today and it is now 67% Hcrit and 21 Hgb so the numbers are moving. And I will message my dr (who is a regular hematologist but not an MPN specialist) to set up a plan for how/when the targets will be achieved. You're right those targets really are important and from what I understand numbers above target have risks that increase dramatically

[saltmarsh]

Welcome to the club. This is a disease that, for most of us, can be managed quite effectively. The posts above contain a lot of very good information. I'm 77 and have been dealing with pv for 5 years. Other than afternoon fatigue, it's manageable. I take HU, no phlebotomies, and vitamins. I'm lucky not to need any other prescription drugs so relatively few issues other than fatigue. One thing that often comes up is that for many of us, the treatment plan needs to be tailored to us as individuals - there is no cookie cutter approach here.

I will make 2 suggestions - reduce or eliminate alcohol intake as it is both a diuretic and inflammatory and, drink lots of water. Wishing you the very best going forward.

[sticksofmaine]

hydroxyurea and aspirin and phlebotomy have gotten my counts almost to normal for over 3 years.