Posted , 3 users are following.
hi everyone I'm new to this group. I was dx with Pv 4 yrs ago. I can't take aspirin due to stomach issues. My platelets finally reached 1 mil. I started Hydroxyurea and was so achy couldn't get out of bed. I am now on Jakafi 10mg 2xday. The Jakafi is also making my body ache. Is anyone on Jakafi and having success with it? Thanks
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peter98873 Zapamania
Posted
Hi Linda.
Pleased your election is concluded? I was actually diagnosed with PV 15 years ago in my late 60's but realised then that I had been getting related symptoms some 20 years previously without realising what I had got. The symptoms were mild and quickly forgotten until a routine blood test suggested PV. I had led a very active life before the diagnosis and the subsequent input of Hydroxy. dampened my activities a little. Still reasonably active now but with more forethought. I can do most things I want to do. The PV with the associated treatment took some time to settle and as I said previously, I feel the Ruxolitinib has so far proved beneficial with the symptoms controlled far better. It is not perfect though.. Kep well.
Peter.
Zapamania peter98873
Posted
Hi Peter I haven't looked at the Pv information on this web site yet. I'm new and will have to find it. All the other sites do address the leukemia possibility. I'm going to dr vampire today lol. My joints are really aching this morning more than ever. I'm going to ask if I could take Advil or something for the pain. So far the only benefit I have noticed is no itching after a shower. Well I'm pleased with the election. We need change. You give me hope in that you have been in this Pv arena quite long and you seem fine. I hope I can become like you. I had a very active life also until the meds started. I hope to get it back. I'm still scared and confused. Thank you for your very kind and informative answers. Linda
peter98873 Zapamania
Posted
Hi again Linda. It seems you can be a little more positive about things now. I know that when I started with this PV I was the only patient with it on the hospital books. The rarity rate was said to be one or two persons in 200,000 and I don't think much has changed. I was told that originally people were young when this disease was found but in more recent times with people living longer it is showing up at a later stage in life, when it seems to be more effectively controlled, and less symptomatic.
Apart from what the haematologist said I had little other information available to call upon. Things have certainly moved on with many advances having originated in USA. So you should be on top of things there. Stay well and in good spirits and look forward with good expectation. Hope your appt. proves satisfactory. It will be interesting to see how things progress for you for it seems your PV history is not too dissimilar from my own. Peter.
Zapamania peter98873
Posted
Hi Peter things are pretty bad today. My plates went up to 1 mil 59 from 795 from last week. That's almost a 300 pt rise. I'm gonna take prednisone for a week and he's gonna order 5 mg jak to take 5 in morn 5 in evening. The goal is to get me to 10 mg twice a day. I asked him if this doesn't work am I gonna die and he said I can't lie to you you probably will. Wow I'm so scared. My bp isn't so great either. Right now I'm just numb. Thank you for your kindness and concern. Linda
peter98873 Zapamania
Posted
I feel you have reached some sort of impasse in your treatment. When I was offered Ruxolitinib I was clearly advised I could not go back to Hydroxy again. I get the impression that this is what your doctor is telling you, even if a bit firmly. He will know that if you do not accept the Ruxolitinib treatment there is nothing else available that he can do for you. The consequences were made quite plain. Have you considered taking a mild analgesic pain-killer to suppress the side-effects you feel so much. It is something you could discuss with your doctor, and maybe he has another idea or two also. I am sure that something to suit you could be available and give you a more positive outlook. I have done my best to alleviate your fears but as our treatments are so similar now, there is little more really that I can offer. We all go the same route at the end of the line, no matter how long it takes. Best wishes.
Peter.
Zapamania peter98873
Posted
peter98873 Zapamania
Posted
Thanks for your message. I think you will make it OK. You still have a good future despite all the ups and downs you are encountering. Will keep an eye open for anything extra you have to say. Good luck.
Peter.
Zapamania peter98873
Posted
Hi Peter it's me again the pest from the west lol. Yesterday was one of the worst days of my life. My plates went back up to a mil I have to take the 2 jakafis 10 mg twice a day. Taking one isn't enough. So I felt so much despair. Just a week ago my plates went down to 795 from a mil and I was so happy. And then bam. I felt like I got hit in the head with a bat. Today is a new day and I have absorbed the shock. So I feel a little better mentally. Possibly more optimistic. I'll keep you posted if anything changes. You have been a huge comfort to me. Linda
peter98873 Zapamania
Posted
Good news really. Lets hope it continues for you and things settle down to a comfortable level. Your blood counts will find their own level if you stay with the same dosage and probably the side-effects too. Seems like your doctor has your concerns at heart.
Peter.
Zapamania peter98873
Posted