To go onto meds or not?: Hi Guys, just wanted some... - MPN Voice

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To go onto meds or not?

Aime
Aime

Hi Guys, just wanted some second opinions from those who have PV and have moved from venesection only to some of the more serious meds. My blood counts at the moment are okay but my iron levels are low and stay low with venesections. I had an arm op back in July and although everything has healed and I’ve had a big improvement in the pins and needles, I cannot get my energy levels back up. I’ve tried following some of my own advice re fluids, healthy foods, rest and exercise but can’t seem to raise myself up from this prolonged bout of fatigue.

I just wanted to ask: at what point is the decision made to change to meds and what are the reasons for this decision being made? I don’t want to start meds but my quality of life as far as going out and doing things isn’t great at the moment.

Thank you, kindest regards Aime xx😾😾

17 Replies
oldestnewest

My understanding is if you are low risk and under 65 or maybe it’s 60 and able to be controlled by venesections then no need for meds. As you know everyone is different. I fought for Pegasys. At the time I was unable to work, due to fatigue. Within 4 weeks my fatigue started to lift and I went back to work. After 2 years my iron levels are normal and I’m now reducing the interferon. My consultant, at the time, said Pegasys would give me horrendous symptoms and my iron levels would never return to normal. Wrong and wrong. I’m so glad I did what I did. Good luck with your appointment.

Aime
Aime
in reply to EleanorPV

Hi Eleanor, thank you for your reply as my quality of life is quite badly affected just now by fatigue as well as gastric issues which may or may not be linked to my PV. I am going for an ultrasound next Friday which is before my appointment at Edinburgh which I’m really glad of now. I don’t particularly want to go onto meds but if my fatigue was lessened, that would be a huge plus for taking pills!

Thank you again, kindest regards Aime xx😼😼

EleanorPV
EleanorPV
in reply to Aime

I also have gastric issues. Mine are definitely due to PV. Hope you come back from Edinburgh with a clear understanding of what’s best for you. Sending you support xx

Aime
Aime
in reply to EleanorPV

Many thanks Eleanor, much appreciated. Aime x😺😺

Hi Aime,

I can't help regards PV as I'm ET, but I can certainly sympathise regards fatigue and the dilemma as to when to medicate. Big hugs from me all the way from NZ. 🙌🌷💐 Peter x

Aime
Aime
in reply to stillkicking

Thank you so much Peter. This forum certainly plays a part in feeling better! Kindest regards Aime xx😺😺hugs very much appreciated.

Hi Aime.

Sorry to hear your energy levels are low, this seems to be the main problem with our conditions , I know you are PV and I am ET. But symptoms do cross over between the two.

I read you are seeing a new Heamo so hopefully they will be able to help you on that choice.

Wishing you best wishes, and that your change of Docs proves to be all you hope it will be.

Hug Sandy x

The common criteria for commencing drug treatment (or at least having conversation about it) appear to be age (greater than 60), platelet count (greater than 1500), ability of venesections to control HCT, other underlying health issues / evidence of prior thrombotic episodes and symptom burden.

I have PV (originally diagnosed with ET). I resisted drug treatment for as long as I could. I recall taking the view that despite the symptom burden ‘better the devil you know than the devil you don’t’. My iron levels dipped low when I had ET and I took iron supplements which improved things. I then came off the iron when I started venesections and my transferrin etc levels were very low and I felt pretty awful. When my platelets hit 1700 I decided Hydroxy (The Prof’s choice) was a no brainer.

The effect six months on is remarkable. Blood counts are almost all within normal range. I rarely have a venesection. My iron levels are going North and most of all, in the past few weeks I’d almost say I feel really well. Last Winter / Spring I could barely crawl around my local park with the dog. I might have been out for an hour but I was often found sitting on a bench! My 84 year old MiL had more energy. Unbelievably depressing! This past fortnight I’ve been aiming to walk around 5km a day. And I’ve been managing 10/12km walks unscathed. And able to function on returning home! And that truly horrible brain fog seems to have dissipated. I have no idea how long this will last but boy, am I enjoying it while it does!! We have glorious Autumn weather here right now. I am under no illusions that when it turns cold and grey that might take the edge of things!

So, who knows whether if I had started drug treatment years back I would have felt then as I feel now. I do have this sense though of having ‘lost’ half of the past decade of my life. Of course I did lots of stuff but it was a struggle and it was achieved in something of a fug. And with hindsight the angst I expended on the ‘to drug or not to drug’ issue really was an utter waste of energy.

So that’s my experience. Hope it helps. Xx

Hi Aime, regarding your fatigue, venesections gastric issues and operation. I really implore you to have your doctor to test you for low B12 and for you to check out the Pernicious Anemia site here on healthunlocked. I hope you feel better soon. xxx

Hi Aime,

Regards medication: you could take the view to ‘try it’ for a given time. See how you respond. Your quality of life could be vastly improved!

I think it’s much easier to take that approach when you feel strongly about starting medication. I am on hydrea for the last two years, it controls my platelets (ET Jak2+) but it also lowered my haematocrit which was 47.9 at diagnosis.

Good luck for your Consultation tomorrow.

Mary xx

I was low risk but my haematocrit was always borderline, my platelets were slowly going up and I was finding that venesections were knocking me down when I was moved to hydroxy. I wanted to avoid it, thought of it all was quite scary but as soon as I started I felt much better. My energy levels went back up, I had not realised how tired I constantly was, I was avoiding driving at night and more than1 hour but felt so much better after starting meds. Worth discussing with your consultant

Thank you everyone for your posts and that’s a good point about B12 , I will be asking to get tested. I’m glad I’ve got this new haem appointment so I can discuss properly what my options are. I am over 60 now, platelets seem to be behaving but I’m like a rag doll - everything is so much of an effort, it’s ridiculous.

Many thanks again, hope you are all as well as you can be. Kindest regards and hugs Aime xx😺😺

Hi Aime

I ended up going on the hydroxy at 41, due to platelets going up and I sort of hoped it would reduce my splenomegaly but alas no joy with that yet. I've tolerated it fine and it has kept the haematocrit under control so I've not had venesection for months (although I think losing approx 3 pints during my hip op obviously helped too)! My iron levels are still low and I'm producing lots of naf little red blood cells but I haven't had any side effects with the hydroxy so don't be fearful of it. As people have already mentioned if it doesn't suit you , you could always revert back to just the venesection but its definitely worth considering a trial if you are wiped out with the blood letting. Good luck at the appointment.

Heidi

Aime
Aime
in reply to Heidi-W

Hi Heidi-W, thank you very much for your reassuring reply. I’ll just have to wait and see what the consultant thinks. I’ve got an ultrasound on 5 Oct so that will ensure my spleen is still okay as I’m having pain in that area plus gastric issues. My haem appointment is on the 8th so fingers crossed.

Kindest regards Aime x😻😸

Hi Aime, I was diagnosed at 64 with platelets at 1200, haematocrit 48 and red cells about 6. I had a few weekly venesections which didn't help much so more or less went straight onto hydroxy. The fatigue and visual disurbances disappeared. My blood does vary and the hydroxy doseage goes up and down, but it seems to be working well with no side effects. I've been diagnosed 2 and a half years now. So far I haven't needed another venesection. I hope you have a satisfactory meeting with your haem.

I was diagnosed last November with haematocrit of 54 and platelets just above 600. Initially I had venesections twice a week to bring the red blood cell count down quickly. The doctor then started me on Pegasys in December; although I’m only 55 my spleen was two and a half times it’s normal size and I was suffering from visual disturbances, pains in my legs when I went for even a short walk and constant morning headaches (though strangely enough not so much from fatigue or the dreaded itch so many others have to deal with.) I was lucky enough not to suffer any major side effects from the Pegasys and although this last year has been tough and I frequently felt tired, dizzy and nauseous (my doctor seemed to think this was because of anemia caused by venesections) judicial doses of iron supplements and steadily increasing doses of Pegasys mean that just less than a year later blood counts are all within normal levels and the doctor has just recently halved my dosage of Pegasys. I feel great - I have energy again and can go for long walks without suffering pains in my legs. I have very few headaches and no weird scintillating arcs of light in my vision any more. (These last two symptoms cleared up very quickly after treatment was started.) Also the Pegasys worked really well in reducing the size of my spleen. So all in all I’m delighted to feel so much better. I have to say I was also terrified of starting Pegasys- I was really shocked when my doctor suggested it as I thought my illness could be controlled just with aspirin and the occasional venesection. But now I realize that venesections alone would just cause the platelets to rise and do nothing for my splenomegaly. So I guess for me it was a no-brainer. Maybe see if you can give medication a try and see how you feel? None of us likes to take these scary medicines but you might find it worth it

Thank you Bluetop and Marossi, the last two years I’ve only had about two venesections which was a dramatic decrease to previous years but my fatigue and recovery time after ops is getting much worse.

I’ve had a few gastric issues so hopefully my ultrasound this Friday will tell me what my spleen is doing as I’ve had a lot of bloating, feeling full very quickly and gastric reflux. I’ve also had repeated spells of pain under left ribs which would point to the spleen but as yet my gp thinks it is ok on examination. I’ll just have to wait and see what new haem thinks but the fatigue alone is affecting my quality of life, more each day.

Thank you again for taking the time to reply. It’s so good to have the support of people who understand. Kindest regards Aime xx😸😸😻😻

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