Polycythaemia Vera

Hello Lazy Polly,

I was diagnosed with MF four years ago and take Jakafi twice a day. I also suffer with left shoulder blade and rib pain which I am told is due to an enlarged spleen. 

Things moved on a little

Went to see GP

It seems I had a chest infection so antibiotics have cleared that, the rib pain has gone. She says can't feel that my spleen is enlarged.

I have a referral to haematology but have been warned that it might be weeks/months before I'm seen

Meantime, I've put myself on a daily low dose of aspirin.

In a further development, it now seems I've caught Hand, Foot and Mouth from my little grandson!

Is it normal to just get everything going with PV?Apart from my high Haemoglobin and Haemocrit other blood results were normal ( just Eosinophils on blood film likely from chest infection)

Feeling really fed up!

Keep the faith Lazy Polly. High hemoglobin is a blessing. Sad to hear you wait so long for blood tests.  These blood diseases, if indeed you have one, are complicated and individual. Low dose aspirin is a good idea. I take it three times a week. Keep positive, eat well, exercise if possible.

naugus

Thanks Nagus.  I appreciate your replies

My GP called and wants me to go on a statin as well as the aspirin.  My diet is quite good and I haven't needed a statin before but she 're-ran my risk score with PV and feels that it would be needed now.

I found this research so think it's probably a good idea but I've gone from taking no medication to proper old people's drugs !   Also worried that the joint and muscle pain you can get from Statins will add to the aches I already have

Exercise of any meaningful sort seems a bit impossible.  This morning I cleared some stuff out of a garden shed, went food shopping.  I'm wiped out!

Podoltsev NA, Wang R, Shallis RM, Stempel JM, Di M, Neparidze N, Zeidan AM, Huntington SF, Giri S, Hull SC, Gore SD, Ma X. Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia. Cancer Med. 2023 Sep;12(18):18889-18900. doi: 10.1002/cam4.6528. Epub 2023 Sep 13. PMID: 37702132; PMCID: PMC10557879.

Best wishes Lazy Polly, clearing out a garden shed and shopping is plenty of activity .

I can relate to how you feel as I was diagnosed with Polycythemia Vera in November last year, was on Hydroxycarbamide for 6 weeks but stopped as I couldn’t tolerate it, my blood counts all nosedived.Started Ruxolitinib in May this year after my blood counts going back up and have stopped this a few weeks ago again due to my blood counts taking a nosedive again. My haematologist has said a bone marrow biopsy is needed as he wants to see if I have Myelofibrisis instead. Since coming off medication I have had a lot more bone pain and just feeling unwell more than usual with no energy, I now appreciate how well I did feel on meds but didn’t realise it.

Yes this is me

I've been back and forth to the GP for a while with fatigue. 

The bone/muscle pain is in more recent weeks. 

Feeling frustrated at not getting an early appointment and a bit worried every time I get a headache that it's an impending stroke

You seem to have been put on the meds rather than venesection?  Did they say why?

I did have 3 venesections before going on meds and haven’t had any more as I have just been on and off meds over the past 9 months. I did have a TIA last October and that’s when my life as I knew it disappeared and have had to adjust as time has gone by

With the drugs it’s dammed if you do and dammed if you dont. Diagnosed with MF four years ago. On Ruxolitinib since March. Lower white blood count, good, low HGB and red blood count, bad. More energy, good.  There is a new inhibitor Momolitinib  that came out last year that doesn’t lower the HGB but comes with other side effects. Suggest you request/demand light anesthetic for your BMB. I have had two one without, never again and one with. 

Thanks.