Treatment for PV in France

[lucieboo]

In Spain I saw a very experienced haematologist: my treatment was 6-monthly phlebotomy, 300 or 400ml, and Aspirin. I was diagnosed with PV in 2010, had more frequent phlebotomy initially to reduce the haematocrit, and my treatment in Spain controlled this well, with negligible side-effects. For the past twelve months I have been treated in France as we are now resident here, but I have some concerns: treatment is Hydrea 2x daily which has reduced my leucocyte and platelet counts well, but failed to control the haematocrit. My specialist is a rheumatologist who also deals with blood diseases as the local hospital does not have a haematology department. My GP will not refer me to Toulouse which is the nearest with haematology specialists, but has confirmed with them that my treatment is appropriate. Apparently, phlebotomy is not done here for PV. Is this OK? I continue to take Aspirin. I am keeping well.

[Inca]

Hi Lucieboo,I too have PV,was diagnosed 2010,here in SW France.I had venesection at first until red cells became a reasonable level.Since then ,Hydrea& Kardegic,also as I have a stent due to a collapsed artery after my very thick blood thinned with meds, I take Verapamil .My consultant at Agen hospital told me that due to the stent I can not have venesection,must keep on Hydrea.My doctors in village we live near are excellent,a nurse comes every month to do the"pris de sang",then depending on results Hydrea is adjusted,I do go up and down sometimes,at the moment stable on2tabs for 2 days then 1tab and so on.Attached to Agen hospital is a Blood Clinic,supposed to be first class,certainly they were more than caring to me.I get very fatigued,I know PV causes that but so does the Hydrea.I hope you are coping with all the issues we deal with,must say ,in my case I have great support from Dr's and consultants,the latter will call me at home if he is concerned at all about results.Best wishes to you,Iwonder ,are we the only PV people in this part of Fr ?

[lucieboo]

Hello Inca

Thank you very much for your helpful response. Re fatigue, I take Coenzyme Q10 100mg daily which I buy over the internet, and have found it very helpful, also we have three dogs so I have to walk a good distance every day. I think exercise is very helpful for PV fatigue, but it is not always easy to make yourself do it! I too have a stent, same reason, am sure it was due to the thick blood though the cardios insist I have arteriosclerosis: I'm not so sure. Perhaps I too can manage on just Hydrea? Plus aspirin. Got a bit worried when my haematocrit rose to 58 and argued with the consultant until he agreed to venesection, but don't think he'll do it again. I read that it is supposed to be kept to a maximum of 45, but I can't get it down to this with Hydrea, presently 53. The doctors are very good here too, but not very open to discussion, and I rather wish I was seeing a qualified haematologist as I did in Spain.

Good luck with your fatigue, suffered from this a lot in the first two years, also itching, but perhaps Hydrea helps?

[Mazcd Partner MPNVoice in reply to lucieboo]

Hi Lucieboo, I passed your query through to Prof Harrison at Guy's Hospital and she has replied: "I am a bit unclear. But in essence if your blood count is controlled in particular the haematocrit less than 0.45 then it's fine. If you are saying my white cells and platelets are ok but my PCV/haematocrit is above 0.45 then no that is not ok", so it would be best to go and speak to your doctor and perhaps insist that you see a qualified haematologist, I appreciate that this might be difficult as you say your doctors are not very open to discussion. I do hope you get on ok. With regards to the fatigue and itching, these are all part of having a MPD, and as you say, exercise is good for the fatigue and there are some hints and tips about coping with the itching on our website which might help mpdvoice.org.uk/living-with.... Let me know if you need any more help. Best wishes, Maz.

[lucieboo in reply to Mazcd]

Thank you, Maz: no, my haematocrit is not under control, it went up to .58 (58 here) until I insisted on a phlebotomy, since then it is .53. Believe me, I have been fighting for better treatment, copied professional info from the internet saying the haematocrit must be kept down to .45, to no avail. My blood analysis showing .53 haematoctrit was sent to Toulouse haematology and my GP said he had received a reply saying I was being appropriately treated, they don't do phlebotomy for PV in France. I increased my dose of Hydrea to three a day for a week (without medical advice) but got severe siide-effects, and it only had a marginal and temporary effect on my heaematocrit. Back to two a day. Can go back to Spain twice a year, can see a haematologist there, but it is not a very satisfactory solution as I live in France. So strange as I had such good treatment here for my heart attack. Is there anything else I can do?

[lucieboo in reply to Mazcd]

Hello Maz: I am following Prof Harrison's advice and will change my GP if he won't refer me, there is a good haematology department at the new cancer hospital/unit in Toulouse and I am aiming for there.

Thanks to you and all at MPD Voice.

[lucieboo in reply to Mazcd]

Hello Maz: thanks to your and Prof Harrison's encouragement I have now found a good haematologist/oncologist at Clinique Pasteur, Toulouse, who is in perfect agreement that my haematocrit needs to be kept down to a maximum of 45%. I will re-start phlebotomy in a few days and continue with Hydrea. I am so relieved! So grateful to you both. Cecilia

[Mazcd Partner MPNVoice in reply to lucieboo]

Hi Cecilia, that's such good news, I am so pleased to you have been able to find a good haematologist, I do hope it all goes well for you. Maz x

[Hidden in reply to Mazcd]

Zyrtec and Zantac will help 90% of the itching, to me its a miracle drug, and its over the counter fot both of them.

[lucieboo in reply to Hidden]

Zyrtec makes me very dozy. I can take it at night, but like with Atarax I am a zombie in the morning. I am trying Zantac alone as it will also help with my GERD. Thanks.

[Hidden in reply to lucieboo]

Hi Luciboo, ther is a new med called Jakafi that helps keep your numbers down where they should be but its a little expensive, so most insurance companies make it hard to get it approved and paid for, but look into it, this may help you.

[lucieboo in reply to Hidden]

Hello Kelly I know about Jakafi but for me it is a last resort as I am doing well on Hydrea.

Thanks. Best wishes.

[Inca]

Hi Lucieboo,you are quite right,exercise is good even on the weary days we have.Like you ,walk my two German Sheperds daily,the younger one,requiring his training too so I am well exercised,feel better too.I have sometimes gone way above 50's with heamatocrite,then my Hydrea is increased and it soon comes down.My itching eyes and skin stopped when I started on it.Think I try to do too much,still think I can work( I'm sculptor/ artist) as I used to ,no way,rest my Dr says is essential,get so frustrated!Heat also a problem,the recent temps esp.I'm advised to stay as cool as poss.,as blood thickens I think when over heated,so many things we do not understand,Good Luck with finding a good heamo,a French friend tells me there is a good one at hospital in Toulouse,but could not remember the name. Very Best to you

[lucieboo in reply to Inca]

True, Purpan, Toulouse: I took the details to my GP, including the consultants recommended for blood cancers, but he has so far refused to refer me, saying Toulouse hospital told him my treatment is appropriate. It is so frustrating! I only see the GP now. Useless! I get blood analysis done regularly, but no action taken, whatever the results. He just says 'it doesn't matter about your haematocrit, just keep taking the Aspirin and Hydrea.

Good luck with your condition and press on as far as is reasonable, when you can't just try to accept it, I think it is the only way. I do yoga and relaxation.

[Inca]

Meant to reply earlier,to ask do you do yoga in a class,or alone?I have wondered if it would help me to relax.I do have weekly massage from a lady who specialises for cancer patients,very soothing.My results were more than 50 this month 44 last time,so 2 Hydrea per day now,feel very disappointed it's going up again,no obvious reason,except that I have felt really "off" for a week or more,appears I have some infection or other,so anti biotics too.Dr says PV and meds compromise immune system ,makes us at risk for all kinds of bugs that normal people do not succumbe to!!How odd that your Dr doesn't seem concerned when your hematocrit is 50 plus.I looked again thru my dozens of result papers,I have in 4years been 54- 57many times,when first diagnosed was 80,so maybe it's normal for us to be 50's yet OK.Sorry you are so frustrated,we have enough of that with the rotten condition with out more of it.I think we learn more on this site than from our medics,I showed the info I had gleaned to the consultant,but the response was a Gallic shrug! Best wishes and Good luck.

[lucieboo in reply to Inca]

Hello Inca

Thank you for your reply, sorry about the delay in responding. Am making progress! Seeing a hematologist/oncologist in Toulouse, fixed it all myself despite my GP. Look at the earlier posts: Prof Harrison says the aim should be a hematocrit of .45 (45%), to be maintained, and I've read lots of papers that say the same. Phlebotomy worked well for me, prefer it to Hydrea, hope I can resume the bleeds, and Hydrea as necessary. Yes, I found my GP didn't like it that I knew more than him about my condition, so I will change. Perhaps a second opinion for you too?

Keep cheerful and optimistic, it helps. I go to Yoga classes, lovely teacher, much better than DIY. Ups-and-downs to be expected, I'm afraid, take time out and be kind to yourself when you are feeling down. And a good, brisk walk in the countryside can work wonders. Good luck!

[Inca]

Hi Lucieboo,sorry not to reply earlier,have been wondering how you got on with rv at Toulouse?Hope it was satisfactory.I'm up again this month to 54,very confused as I feel OK,and up to 2Hy per day since last month's results.Dr today,so no doubt Hy will go up again,may be not responding to drug now as you found.Keep well as poss,Inca