PV and common Cold

[Headaball]

Morning all, Only diagnosed with PV since Nov 23. Low risk as im 38 and platelets have stopped increasing since the introduction of aspirin and a few other for the itch. In the last 2 months it feels like im constantly battling a cold. I get slight relief for a few days and then its back. Anyone else go through this, did anything help ?

[Ebot]

Hi there. Are you sure you aren’t suffering from summer time allergies? Maybe your pharmacist or doctor could suggest some allergy relief meds and you could see if that works? The symptoms can be very similar to a cold. Just to note, the aspirin won’t have any effect on your platelet numbers. It simply reduces the risk of clotting. Hope you feel better soon.

[Headaball in reply to Ebot]

Hiya, thanks for the reply, im on a prescribed high dose antihistamine for the Pruritus so I can do no more on that end. I realise i wrote that badly, just that my platlets have levelled out since starting on it. One doesnt effect the other

[william-Indo in reply to Headaball]

You should try Zyrtex 1mg for your pruritus.It work very well to many of us here.

The other option is Beta Alanine.

Cheers

[GardNerd]

I don’t have any thoughts on the cold, but I’m wondering if you’ve seen an MPN specialist. I was diagnosed at age 44, also very fit and active - probably low risk for any thrombotic events (which I’ve never had). I took an aspirin and had periodic phlebotomies. Then, in the blink of an eye, I was 60; and an MPN specialist did a bone marrow biopsy (first one since age 44). My allele burden was ridiculously high, and the disease had progressed almost to MF. I had no idea. I was living life, feeling good, staying fit and active. I share that not to scare you, but to suggest a review by an MPN specialist and maybe starting an interferon in an effort to keep the disease from silently progressing. They can check your allele burden with blood work, and it’s a good number to have this early in the disease (as a baseline).

I have great regret that I didn’t know enough to explore an interferon earlier in my journey. I honestly had no idea the JAK2 was reproducing in my bone marrow all those years. I’m no expert, but it strikes me that those of us diagnosed young have to take a pretty long view when thinking about how best to manage this thing.

I hope you get some relief from the cold symptoms. The itching can also be a bear. For me, it got to a point that I didn’t want to take a shower. After some time on Besremi, the itching went away, which has been a great relief.

[Headaball in reply to GardNerd]

Thanks so much for that, I'll definitely keep an eye. Ye really just dont know what is a symptom anymore. My treatment plan is bloods and Advanced Nurse every 3 months and Consultant once a year, only had my first Marrow Biopsy 6 months ago, so ill deffo speak to the Nurse on my next app about that. The itch is by far the worst, under control at the moment but I would cry walking into have a shower knowin what was to come... thanks so much for all the advice

[LIGEBA in reply to GardNerd]

GardNerd this does seem to be quite the sneaky disease. So many have no idea they have a problem until they get a blood clot out of the blue. Hearing that you were young, fit, and feeling good, yet your bone marrow had progressed to near MF is quite scary. How high did your allele burden get? On a bone marrow biopsy which number shows how close you are to MF? How long have you been on Besremi and has your allele burden dropped? Has your progression to MF lessened? Thanks.

[GardNerd in reply to LIGEBA]

My allele burden was 88% prior to starting Besremi in June 2022. At last check, in May 2024, it was 35.4%. There isn't 100% agreement that the allele burden matters, but it's generally thought that the lower the better. Higher numbers tend to correlate to worse outcomes. I'm no expert, but I believe there's a lot that goes into concluding that PV has progressed to MF. In my case, my fibrosity level was Level 2; but I didn't have some of the other symptoms (like weight loss and night sweats). Also, my bone marrow was still actively making red blood cells. In looking at everything, they concluded that I still had PV.

[LIGEBA in reply to GardNerd]

Thanks GardNerd. Is the fibrosity level something on the BMB report?

[GardNerd in reply to LIGEBA]

Yes.