Feeling Lucky

[AEROGUY]

New to the group. Male 73 diagnosed Oct '20. Had sepsis 3 yrs ago. Been treated for suspected heart issues since then with all the std heart meds by cardiologist. Blood test always puzzeled him. No cholesteral, strong heart but hospitalized often with chest discomfort, usually lower left. Finally he called to tell me of the PV diagnosis. Put on HU, aspirin and phlebotomies. Blood numbers went down from 185 to 119 so stopped plebotomies and HU in Nov '20. Hct had gone down from 51 to 46.

Had visit to heomotologist late Dec for second opinion cause all through this I was no longer having chest discomfort and feeling great. He confirmed PV with JAK2 positive. We had gone back to a vegetarian diet and since Jan '21 been mostly vegan. Now lost 25lbs to mid 150's. He put me back on HU, 500mg every other day. More blood work coming next month.

So I feel guilty when I see so many in these groups with pain, rashes, dizziness, etc. I still have itching(for 15yrs), some tinnitis( for2yrs) and now redness under toe nails(apparentyly caused by the HU) but none of this interferes with my daily life, so far. Wishing all well in dealing with our conditions and look forward to your posts to learn more.

Denny in Canada

[Wyebird]

Hi, so glad things a looking up for you. Regarding others with worse symptoms than yours and feeling guilty yes that’s what goes through my mind. Fatigue is my biggest problem but I’m able to afford home help which relieves the pressure and allows me to do fun things as long as I plan them. X

[AEROGUY in reply to Wyebird]

Yes, so lucky to feel well. We have been pretty much homebound with Covid and have not had many strenous projects to wear me out so not even bothered with fatigue yet. My nutritionist suggests that the diet we are on may reverse some of my issues(PV, BPH and cardio). We'll see about that but in the mean while I feel great and am not concerned about taking on projects. After diagnosis we were feeling pretty concerned about longevity and even purchased burial plots to prepare for the worst. That is not a concern at this point and just relieved to not have the life changing symptoms.All the best to you.

[Inclement]

I am newish to this group too and in similar position with PVR + diagnosed July 20. On 1 gram HU daily and so far feeling really well apart from fatigue if I really push myself. I sympathise with others not so fortunate but am hoping that there are many more like us who don't feel the need to post regularly but who can enjoy better lives after diagnosis.

[Cja1956]

No need to feel guilty. This disease affects everyone in different ways. As for me, I’m happy that you’re doing well and I hope it continues.

[IrishSarah]

When I was first diagnosed and referred to this forum I found it immensely helpful to read posts from people like yourself who were doing well Denny, so no guilt necessary! MPNs present with such a wealth of weird and wonderful symptoms or none, it’s great to have the full range represented here 💚

[AEROGUY in reply to IrishSarah]

Thanks for your comments

[hunter5582]

Welcome to the forum. Glad you found your way here.

Sounds like you have a good attitude. Like you, I have a relatively indolent form of PV. Have had a MPN for about 30 years. Was ET, but "progressed" into PV about 7 years ago. I actually have more trouble with the secondary symptoms related to systemic inflammation than anything else.

Hope you get relief from the itch (pruritis) soon. HU is not likely to help with this issue. However, ruxolitinib is known to be quite effective for pruritis. If you are in the States, it is actually the only med approved for PV. It is a bit pricey though so the insurance companies don't like to pay for it.

All the best.

[AEROGUY in reply to hunter5582]

Thanks for the info. Have tried a lot of things for the itching over the years with little success except for antibiotics one time for a bladder infection. Only lasted a week though.

[hunter5582 in reply to AEROGUY]

There is a topical ointment call Eucrisa that works on a PTN basis for different forms of itching. I use if for eczema (its primary purpose). PV related itching responds best to Jakafi. Good idea to consult with a MPN Specialist on this rather than a regular hematologist.

[Mazcd Partner MPNVoice]

hello Aeroguy, and welcome to our forum. Really pleased that you are feeling so well. Best wishes, Maz

[Minu68]

Hi Aeroguy, It's great for others to see that there are many of us with minor symptoms that don't stop us enjoying life, being able to work etc. It gave me hope and comfort when I first came into this group, seeing it is not the end of life as I know it. Most of us have had the condition a while before diagnosis, it's great the meds have lowered some of your symptoms! No need to feel guilty, we take it all here, and are here for each other, through the good and the bad, x

[AEROGUY in reply to Minu68]

Thanks. The first month or so we were feeling pretty low from our early study of PV but these sights put us into action as people offered encouragement and suggestions for various symptoms. Covid lockdowns have created lots of time to research and work with the various ideas presented. We have adopted a vegan lifestyle and my wife has become a food nazi keeping me in line. Liking the results so far.