Hydrea

[lucieboo]

I am 76, Polycythaemia Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have to have another bleed. I tolerate these well but find they make me tired and breathless. Should I be considering alternative medication eg Interferon?

[Inca]

Hi Lucie boo,

Like you ,P V 9 yrs,Hydrea after some weeks of 'blood letting 'then on to Hydrea.Three per day for several months as H C T remained high.To cut short a longish storyI ended up in hospital quite ill and exhausted.before Xmas.

Evidently Hydrea stopped working for me....now I am on Ruxolitnib,the amazing thing being my H C T became normal within two weeks.It hasn't been without its blips and now the dose is halved from the original prescribed.I have pris de sang every two weeks due this week so hoping all is well. Was surprised you were having venesections,my consultant tells me it's not good if ,like me you have a stent.

So yes ,it's worth changing your medication it was not sure if I was going on to Peg but they decided on Rux. I actually feel better in myself but still get very tired middle of the day after working in studio.

I hope you soon feel less tired,I am 78,so I wonder if getting older does not help the P V or the Meds. Very Best to you ....are you still treated in Fr?

I am,we are about the only Brits left locally!!!!!Again Very Best,Sally

[lucieboo in reply to Inca]

Hello Sally

Yes, still in The Ariège, love it here. Sorry to hear of your downturn but I am prepared for the same, I see the consultant next week and it is fingers crossed. I don't think my RBCs respond much to Hydrea anyway, so it is not exactly a change, but I will need annual venesection at this rate, stent or not, can't really increase Hydrea above 3 daily! I'll let you know. Take care, and good luck.

[lucieboo in reply to Inca]

Hello Sally

Read something really chilling in the Guardian yesterday, the Government advice from last week was that our healthcare as pensioners in the EU would be cancelled on 30th March if the UK leaves without a deal. so we should 'get private health insurance'! Am scared to change to Ruxolitinib, if it is recommended, as it is expensive. I hope this is not true and things will be resolved. We will keep in touch!

[Inca in reply to lucieboo]

Good Morning Lucieboo,

We are on the Fr health system and pay the top up insurance,U K refused to my N H S U K even tho we have property in Uk because we are in Fr more than U k.....so !I hope it doesn't mean the Fr System !!!

Sick of hearing Brexit !!!Sally

[lucieboo in reply to Inca]

We have Cartes Vitale, but based on S1 forms, which would be cancelled in the event of no-deal. It looks like we can apply to join PUMA if the UK deserts us, BUT EHICs will be cancelled and we will not have health cover for visits to the UK. Of course, I cannot get private insurance. Fingers crossed a deal is reached but I am not optimistic. We would have to pay something into PUMA, I think, and would then be eligible for French EHICs. I find the situation disgusting. I will write again to the PMs office, completely pointless but it will make me feel better. We have our Cartes de Sejour, thank goodness!

[Inca in reply to lucieboo]

O M G....worse than I imagined,we do not have carte sejour,just have not bothered,,,better find out about it. Well done you to write P Ms office,the whole thing is unbelievable isn't it......now I know why everyone is leaving,let's hope a sensible deal is achieved,

Good Luck with your consultant,really don't worry about Rux,it really has worked on my results thus far.Keep me informed re the Health care if you can....and your rendezvous. Sally

[lucieboo in reply to Inca]

I think I can continue on Hydrea for another 6 months, then we'll see. I'll let you know. We are NOT leaving!

[mickey64 in reply to Inca]

Hi Inca, my Doctor has originally wanted me to try Pegasy but with rising HCT decided to change route and do Rux. Would love to know side effects from this drug and did you have the shingles shot before taking?.

[denkbaar]

hi

i've taken everything the last 20 years for my PV, hydra was the wordt. Now on Jakafi with is marvelous, really!

[lucieboo in reply to denkbaar]

Yes, it seems that change becomes necessary. I will see what the haematologist says. Thanks for your reply, and good luck to you.

[tracey13 in reply to denkbaar]

My husband has not got post PV MF he's been waiting three weeks now for jakafi ruxlitnib it's a joke . We are in England it has to be approved. He's working full time struggling day to day with exhaustion and is desperate to see if ruxlitnib will help and ease his symptoms x

[lucieboo in reply to tracey13]

Hello Tracey

I am sorry, it is difficult having to wait and I hope you are successful. I wish you both the best of luck. You have to be strong and persist, sometimes make yourself a nuisance to get things done in the UK, but you do often succeed in the end.

[tracey13 in reply to lucieboo]

I've spoken to the transplant team they said it takes about 6 wks to get the medication. This is bloody cruel.

My husband has been waiting since last year it's a joke.

It's still not approved but it's got a date of 20.02.19 so we not sure if it's getting approved on this date or issued!

My husband works away so it's harder to get to the hospital back home nothing is straight forward.

[lucieboo in reply to tracey13]

This will always be a problem in some countries as it is expensive. It does seem cruel but I see children in the UK with cystic fibrosis are also being denied a new drug which prolongs life. It is the world we live in, unfortunately.

[denkbaar in reply to tracey13]

In Holland you are allowed to use ruxolitinib if you can’t stand hydrea and pegintron like pegasys.

It s of course pretty expensive so far

For MF it is the best and only at the moment and there’s no discussion about anymore

[lucieboo in reply to denkbaar]

Thank you denkbaar. I am not aware that I have moved on to MF, simply that Hydrea doesn't seem to have much effect on RBCs so my haematocrit is up again and I need venesection. I am going to try to continue as I am for another 6 months if the haematologist is OK with that as status of healthcare provision has suddenly become uncertain if the UK crashes out of the EU. The UK says they will cancel S1 provision and EHICs in that case on 29th March and I will have to apply for French healthcare under the PUMA scheme, instead of the reciprocal arrangement which exists now. What I do know is that Hydrea is cheap, as is phlebotomy.

[tracey13 in reply to denkbaar]

My nana lives in Holland she was explaining about the medical costs. We thankful of our NHS .

[follies]

I had my 1st phlebotomy last week. My saline was started a few minutes before they started blood extraction. Not sure if this process is used elsewhere. It may reduce your symptoms. I did feel tired that afternoon but back to "normal" next day.

[lucieboo in reply to follies]

Yes, I think it may help with immediate symptoms, but in fact drinking plenty should have the same effect.

[tracey13 in reply to follies]

My mam needs saline next time she has a venesection as she fainted thelast two times and was really ill after they took the pint of blood off.