PV diagnosis

[pvgirl]

Hi! My name is Pauline. I was diagnosed with PV Jak 2- 1 year ago. I'm on phlebotomy as needed and baby aspirin daily. My question; Does anyone get a flushed face just out of the blue? What are your opionions on phlebotomy only? Is there any solution for more energy besides exercise and eating healthy?

[Zeus1]

Hi PVgirl ! I am also PV on phlebotomy and aspirin. I keep getting a wave of warmth on my face and it stays for a good few minutes where you can feel a sense of radiating heat. No where else just on the face. Probably 2-5 times a day. I was not sure if part of the condition or an age thing (age 55 F)

For treatment - my dr advised phlebotomy until it cannot be controlled that way but also has an age 60 cut-off to start Hydroxyurea even if still managed.

Not sure on your other questions but would be interested to see other views as well plus any diet suggestions. I have started taking tumeric and drinking infused lime water but I am sure there are other good tips too.

A friend at work said to buy Clarified Ghee from Costco and rub on feet - apparently it helps takes heat out of the body and aids sleep - not tried it - has anyone else heard of this.

Keep smiling.

[soisew in reply to Zeus1]

I am 77 with PV and I also get those warm to hot flushes

[Paul123456]

Have you discussed low dose Pegasys with your Hem? This drug splits opinion, some claim it can slow progression and even reverse bone marrow fibrosity. Others say there is no long term clinical proof and why risk the side effects (possible depression, auto immune issues) if don’t need it to lower thrombosis risk (ie under 60 yoa and in good health).

The pro camp believe that starting Pegasys early, at a low dose, offers best chance of modifying disease progression and minimises side effects, if any.

There does appear to be increasing evidence from recent trials that Pegasys could slow progression but still early days and long term significance unknown.

When I was first dx, I went for venesections and aspirin only. However, with my Allele Burden and WBC rising, I decided to ‘risk’ Pegasys. Had no side effects, good response both molecular and haematological and it reduced my Pruritus. So I’m in the Bull camp and would have started low dose (45 mcg weekly) at time of dx if I had second chance. That way I possibly could have stuck with 45 mcg and occasional venesections. I’m currently on 90 mcg.

If you check my posting history you will see lots on Pegasys.

Best Paul

[Zeus1 in reply to Paul123456]

Thanks Paul - that is interesting. I am going to ask about that and do some research - thanks for the heads up. If my Hem is not aware of this - I may visit a specialist - I’m near Chicago but considering booking a trip to MDAnderson in Houston to get an expert option.

Take care and keep smiling.

[lynxfluff in reply to Zeus1]

That’s where I go! That’s quite the trip; I’m not familiar with the options you may have near you. But MDA gives really great care. If they take you on, anticipate a full day intake process with a new BMB.

I’m 32, female, diagnosed at 31. I’ve been on Pegasys since 9/2018. My dr at MDA decided to go ahead and put me on Pegasys because of my high symptom burden. Month-long headaches, constant itching, red face and palms, visual fuzziness, etc. I’ve been on 90 mcg/week but may decrease if my numbers stay as low/go lower.

Peg WORKED for me. I know everyone has a different experience, but mine has been overwhelmingly good. My symptoms all cleared. Rarely do I itch; the rest is gone. There were a couple hours the Wednesday after my first Friday dose where I was way itchier than ever before - like all the extra cells were angry about frying. Never again. Had a couple days of insomnia which went away. Definitely worth the change it’s made in how I feel overall.

[charl17 in reply to Zeus1]

I would consider finding an MPN specialist in Chicago. I am seeing a specialist at Moffitt Cancer Center in Tampa (50 miles) who is pulling the strings on my care. I see him every other month alternating with a local hematologist whom the Moffitt specialist knows well.

[pvgirl in reply to Zeus1]

Hi Zenus, I seen on your post that you are near Chicago... the is an mpn specialist at Northwestern in Chicago. I was diagnosed at Mayo/Rochester, however i live in Illinois( 2.5 hrs South of Chicago), so think I will be transferring to him soon.

[meaboutthis]

Hi PVgirl,

Yes, I have experienced a flushed face at times, which for me is associated with my blood counts being wonky. I also get intermittent burning in my hands and feet and (thank goodness, only rarely) sometimes my genitals as well. My Hematologist upped my aspirin from one baby aspirin a day to a .325 adult aspirin a day, which helped with the burning and flushing. To combat the fatigue that can be pretty bad at times, my GP prescribed Provigil as an off-label try. It does help. Also, check your vitamin B and D levels as these really make a difference too. Sleep! Rest when needed! Exercise has helped me a lot too.

Good luck!

[Richinspirit]

Good morning - my husband has sweats that are equivalent to the female menopause - and obvious jokes aside he finds it very debilitating. He has been tested for just about anything and everything and no one can pinpoint why it happens....... good luck with your search and stay bright!!

[AndW65]

Hi all, I sympathize with all the red faced sufferers out there as I too suffer the same symptom. I am a 53yr old male and I have PV, Jak2+, also have a slightly enlarged spleen as well. I’m currently only on daily doses of Aluprinol and baby aspirin. After the initial 6 venesections in a 10 week period it took about 5 months before my HCT was out of range again and I needed a further venesection. My Ferritin level is low, at time of last v/section it was at 15.7 ug/l, (range is 20.0-300.0) after which it dropped to 8.3 ug/l.

I currently have regular symptoms of a very, very red face , sometimes hands as well. Nowadays I tend to have a permanent reddish complexion anyway. However these bouts of seriously red face don’t last long but I can also feel when it’s happening. When it occurs my ears feel hot as well. The worst symptom I currently have is fatigue. After the last v/section it took about 3 weeks before I felt reasonably fine compared to feeling totally exhausted and drained (excuse the pun). Now 6 weeks later I’m having the odd day where the fatigue hits me quite hard and I need to have a lie down, (especially if it’s a work day). I have a blood test this coming week and I also see my doctor as well so we’ll how things have progressed.

Other symptoms include occasional night sweats and the odd infrequent headache.

Regards to all

Andy

[hunter5582]

I went to see a MPN-expert doc for a consult. He recommended that I d/c both the hydroxyurea and the aspirin and stick to phlebotomy only. Based on my profile, the risks of hydroxyurea (which are significant) were not worth the putative benefits. My profile includes 30 years ET with progression to PV 6 years ago, age-63, JAK2 allele burden = 25%, hx of von Willebrand factors dropping below cut-off at times (especially when platelets higher), mild splenomegaly, signs of HU toxicity at low doses (HU intolerant), and hx of stage 1 hypertension. As soon as I did regular course of phlebotomy, my BP went from 135/95 to 115/75. The doc also took me off the aspirin - saying at my age/profile I was more at risk for bleeding than thrombosis. With unknowing prophetic accuracy he said - you really do not want to bleed in the brain. Several weeks later, I was diagnosed with a hemorrhagic brain tumor (much to everyone's surprise!!). Continuing on a blood thinner could have disastrous results. All of that is a long way of illustrating that we are each unique in how our MPN presents, what co-occurring issues we have, and what meds we can tolerate. One size dos NOT fit all. too many docs resort to the "standard" treatment protocol because they do not have the expertise to analyze the case-specific profile of a MPN patient. It actually sound like you have a good treatment regimen. Doing the phlebotomies has done me a world of good and for my profile is the right choice. Continuing to take the aspirin in my case might have done me serious harm. HU was doing me more harm than good as well. Hope you keep a good doc that is helping you to make the right choices for you.