I'm New Here

[BlushNoisette]

I have had PV for 10 years. I have been participating in the Majic Study for a year; I am doing well on ruxolitinib. This medication is controlling cell production, and the fatigue and pruritus that was making me so poorly before I joined the study is a lot better. I feel very lucky as I have a much better quality of life.

If you are wondering about joining a study, do get all the info you can to help you make an informed decision before signing on the dotted line.

[socrates_8]

Hey Lyn44rms...

I wish finding a study for me here in Oz to trial Ruxolitinib were a possibility...

I am also intensely disliking the associated Pruritus of Interferon...

Best wishes.

Steve

(Sydney)

[jillydabrat]

Welcome to the MPN family Lynn. I, too have had PV for years so can appreciate the problem with fatigue. I am on Hydroxy and it's made an amazing improvement in my quality of life regarding the tiredness but brought other problems with it as well that I am learning to live with. Please, please keep visiting the. Site as these wonderful people have given me more information and support than my doctor or consultant ever has. Hope you find some relief soon. Jill xx

[Hidden]

welcome Lyn, you will get lots of good advice and support on here best wishes Holly

[Luckynlife]

Hi. I'm so interested to hear someone else on ruxolitinib. I have been on it one year and 5mos.now. Brand I take is Jakafi. So curious how long you can take it without some negative result. It's been a godsend for me.....had one month to live and was bed bound after years of massive phlebotomy. I had immediate improvement on Jakafi which gave me a high quality of life back. I know no one else taking it at all. Especially long term. Phlebotomy worked for long time (7 yrs) but eventually left me with no iron (or vitamins, or bones). Chest pain, weakness, and shortness of breath. I am so happy to be up, active, and healthy again. How are you doing on this drug? How long have you been on it? Have you had any problems with it?

[BlushNoisette]

Hi,

I'm sorry for not replying to you much sooner.

I've now been on Ruxolitinib for 1 year and 8 months. I'm doing very well on it apart from constipation and weight gain. I managed to loose about 7 pounds in the months leading up to Christmas but then I put it all back on again over the holiday. As the weather gets warmer, I will get back onto salads and stir-fry meals to get this excess weight off. I enjoy my food so I find dieting difficult.

I take Movicol to treat the constipation and it works pretty well.

Like you I'm so happy to be up and well again. It is such a relief.

I do hope that you continue to enjoy better health, ....... good luck!