hi everyone, i live in Belgium and got a diagnose of PV in february this year. I have been reading a lot of the posts on MPN Voice and have learned a lot about the disease and the different treatments in different countries. Thank you all for that.
My treatment right now is daily aspirin and almost weekly a phlebotomy. I've got 12 in 3 months . The last one was early July. My hematocrit is 37% but I also have very low iron right now (which is the intention).
Since a few months i lose a lot of hear. Does anyone recognize this? Is PV to blame? Could the lack of iron be the cause? I look forward to hear from you and wish you all the best!
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You would be correct to think that iron deficiency can cause alopecia (loss of hair). I did experience that when I was using phlebotomies to treat the PV. It has improved since I went on Besremi.
No, Pegasys is not available in Belgium, many doctors won't suscribe and it is not reimbursed by our health care system. Hydrea remains firstline therapy here. Second line there is also ruxolitinib for patients that are intollerant to Hydrea. I hope that Pegasys will be approved one day. But for now, that is no option.
Glad to hear that ruxolitinib is available when HU is not tolerated. It is unfortunate that Pegasys is not available as it has been used off label for PV for decades. Perhaps Besremi will become available now that it has a first-line treatment indication for PV.
I’m on high dose hydroxycarbamide and been taking since 2015 I’ve lost lots of my hair now and also started with lots small hard skin small lumps on my scalp I’ve mentioned to my Haematolygist who as of yet haven’t come back on this do you know if this is through hydroxycarbamide
Indeed hunter5582, Pegasys is used around the world for MPN. In Holland it is even proposed a first line treatment for MPN. But it was never registered for MPN, so it is Off Label use. But in most countries in Western Europe, Pegasys is reimbursed for MPN. Not so in Belgium! We have knocked on a few doors but so far we have no result.
I have had a loss of hair - not sure if due to hydroxyurea or the anemia I've had twice already. I haven't heard of hair loss being due to PV itself. You're hematocrit is getting low so wondering why you are still getting phlebotomies as this usually done in women with a hematocrit over 42 or over 45 in men. You may want to consider taking biotin as it is thought to help
Thanks for your reply, ERei. I agree, there was no need to have this many phlebotomies. But I justed followed the instructions of my hematologist. I now changed to an MPN-specialist and hope to get a better treatment in future.
ERei suggestion to use biotin is good. I too experienced hairloss while on hydrea (now changed to Jakavi) and biotin supplement has helped considerably. Good luck and be well.
Iron deficiency can cause hairloss, it didnt in my case but it made the strands thinner. I wonder why they appear to be over venisecting you to Hct of 37, for female it can be up to 43 and some say 45. Do you know what your RBC , Hgb and MCV are?. Your hair may fall out less if you had your Hct higher , as you know the idea of venisecting is to make you iron deficient but it seems at Hct 37 you are likely more iron deficient than you need to be. What may be more important is that you say you were diagnosed in Feb ie 7 months ago and you are still being venisected once a month to keep your Hct at 37 , if that is the case you are very proliferative , typically patients after diagnoses will have a venisection once a week or so for several weeks or maybe 2 months and then settle down to one every 3 months or so , this assumes your venisection volume is 450ml each. If I understood what your wrote correctly ie that your venisecting every month then its probably too many. Most experts dont like people venisecting that often maybe 5 a year max. They would say time for drug therapy. It seems it might be a good idea to see a MPN expert for advice, I dont know any in Belgium but Dr Kiladjian is in Paris. Hu or Pegasys /Besremi may also make your hair thin. Ruxolitinib will not make it thin but its not wise to chose your drug purely for hair reasons. I am surprisd the only drug in Belgium is HU, I would have though they would have Pegasys and maybe Ruxolitinib.
I did have 12 phlebothomies during three and a half months. It was exhausting. From what I know now (I changed to an MPN specialist and I have the impression the follow-up is much better now) the last 4 or even 5 phlebotomies were not neccessary. The last phlebotomy was early July. At the end of august my RBC was 6.03, Hgb was 11.8 and MCV was 62. Iron was low at 24 (it came from 15 ...).
No Pegasys in Belgium, only Hydrea (first line) and ruxolitinib (secondline for patients intolerant to Hydrea). It is difficult to understand since Belgium has a very good health care system and Pegasys is available in France, the Netherlands, UK, ...
It looks as if you are over venisected looking at your counts, I can never understand why some docs do this, it’s very simple to avoid. When I was venisecting I got regular monthly blood tests at my GP office, I would get a printout of the results, if I needed a venisection say if my Hct was near 45 or my Hgb was over 150 then I called to arrange a venisection but only if I needed it. Over venisecting is ridiculous. Your MCV is the best measurement of iron deficiency and the one most haems follow, 62 is pretty low. So in the short term you could improve on your iron deficiency and likely hair by not being over venisected.
As for meds, that’s a personal choice, I am on Rux 6 years after 7 years of venisecting and feel good on it with no sides, I stopt venisecting because my MCV was down to 56 and whites up to 23. It seems incredible there is no Pegasys in Belgium, I think it’s also prescribed for other ailments so I wonder if you could get it off label.
The lack of Pegasys for treating PV is frustrating for many patients here in Belgium. From what I know, doctors are not willing to write it off label, it seems. Thanks for the info about venisecting. As HU is not the drug I'd like to use right now, it is important that my phlebotomies are successful :-).
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