Having been diagnosed last year with PV my journey took the usual steps. Venesections,hydroxyea and aspirin. Common symptoms, itchiness,tiredness,blood clots in the feet,very enlarged spleen and insomnia. I do work full time (usually 60 hours a week) and try not to be beaten by Pv.
I have been lucky and got funding for Ruxolitinib. Now 10 weeks in I can say the drug hasn't really given me any side affects. Red cells now stable, platelets went high but now seem on the decent to a normal level.
If anyone wants anymore detail info on my progress and what this drug has done for me drop me a line.
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nj4291
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how did you get funding for ruxolitinib for PV? How high did your platelets go and from what level? Who is monitoring your progress? What is your red cell count - and from what before Ruxolitinib
Sorry for all the questions but I am about to fight for the drug and want to know as much as possible 'for real'!
HI Beetle, You have to be strong and fight your case . Also a good consultant who will fight with you helps.I go to clinic every two weeks just to check levels and basically to collect the next batch of tablets. My background is 39 year old male. I had two major clot incidents (in the foot) and an aortic issue. Was put on hydro for 38 weeks,also warfinarised,aspirin,blood pressure pill and Lipitor. Regular venesections and hydro still kept Hemocratic above 50. Now at 35 on Ruxo and stable. Platelets on hydro stable at 196 but starting on Ruxo over 1000. Now decreasing again 600 then 378. Will be in clinic Wednesday for next results. Now sleeping normally,no itching and no tiredness. The change for me has been amazing.
My consultant has been superb and once you get the drug its hard for them to take it away. It may not work for everyone but for me the signs at the moment are great.
I am also curious how you got the Ruxo, did they not try and give you HU or Interferon. My understanding that Nice had not even approved it for MF never mind PV?
, You have to be strong and fight your case . Also a good consultant who will fight with you helps.I go to clinic every two weeks just to check levels and basically to collect the next batch of tablets. My background is 39 year old male. I had two major clot incidents (in the foot) and an aortic issue. Was put on hydro for 38 weeks,also warfinarised,aspirin,blood pressure pill and Lipitor. Regular venesections and hydro still kept Hemocratic above 50. Now at 35 on Ruxo and stable. Platelets on hydro stable at 196 but starting on Ruxo over 1000. Now decreasing again 600 then 378. Will be in clinic Wednesday for next results. Now sleeping normally,no itching and no tiredness. The change for me has been amazing. Now not on warfarin either now
My consultant has been superb and once you get the drug its hard for them to take it away. It may not work for everyone but for me the signs at the moment are great.
Hi I would like to know what progress you have had with the reduction of symptoms such as fatigue, pain (I think pain is due to the fatigue as it is always worse when I have done to much), hot sweats, poor concentration etc. I am going through the screening process to start on a trial for Ruxolitinib specifically for PV. The trial has just been commissioned (named RELIEF) and so in the early stages. The trial starts with 16 weeks blind then if not on Ruxolitinib there is the opportunity to move onto the drug to see if it helps with symptoms. The trial is specifically been undertaken to help people who have the symptoms of PV as well as stabilising the production of red blood cells but is not a cure. I am a patient at Nottingham City Hospital, but I think the trial is across a number of hospitals so if you want to get access to Ruxolitinib it is worth asking your haematologist
what dose are you on, who is your consultant, great to hear your doing so well, I have never heard of anyone on Ruxo for PV, do you hve any side effects
I slowly upped the dose to reduce any side effects.started on 5mg then 10 then 15 and now 20 mg. To start with had slight headache but now no side effects at all.Red cells very stable so not going anaemic at the moment. I also dont know of anyone else who has been able to get the drug long term on PV.
Just a quick update. This drug for me has been amazing. Having been on weekly clinic visits my results are that good my next visit is not for 2 months. I know the underlying condition is still there but all the usual symptoms have gone and my spleen has started to shrink.
Really pleased to hear of your progress on this drug. It's always good hear the doc say "see you in...." and that next date is further along than you'd thought it might be
I am about to go on the same meds I have an enlarged spleen also at 14cm I have primary milo fibrosis was diagnosed in February this year do you feel better on this and has your spleen started to shrink. Yours frank
Thank you for your reply am going on meds early due to pain in the spleen last week had a spleen infarction was put on morphine. But it made me very sick so came off the morphine.
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