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
I was part of the Ruxolitinib (Jakavi) research trial (still underway in UK) and was given the placebo (Hydroxycarbamide !!). I knew this because Hydroxy was the only
available treatment for PV. I had to stop this and was prescribed Ruxolitinib which was more successful in containing the blood counts at a regular level. I still take the Ruxo. but I will say that some of the side effects can be similar to Hydroxy. You really must discuss your symptoms with your haematologist. Make sure you fully read and absorb the instructions that should be supplied with your Ruxolitinib and any separate literature available. Your dosage should be strictly controlled according to your weight and height etc.. Your symptoms will be better the lower dosage you are prescribed. If you suffer skin cancer this can be exacerbated by either drug mentioned. I have taken Ruxo. now for getting on two years. Ulceration on limbs can also arise after long years of taking these. Be very aware of your symptoms.
Hope this helps.
Zapamania peter98873
Posted
Thanks Peter I had a feeling the dosage should be adjusted to height & weight. Taking 2 10mg twice a day was too much for me. So I am now on 1 10 mg tablet once a day. I am small 5'3 and only weigh 123 at best. I didn't know about leg ulcerations. My dr isn't very informative. I am going to make an appt. with Dr Silver @ Cornell in ny. He's one of the top experts in this field and since I live in nj I'm only about 12 miles away. Thank you for responding.
peter98873 Zapamania
Posted
For your information, Ruxolitininb includes a blood thinning aspect. Maybe the Aspirin is a bit of overload. I keep its use as low as possible.
The ulcerations mentioned really refer to the feet and can be very painful. My symptoms surprised quite a few senior medical experts and it was really thought I had diabetes. This was categorically refuted following an appointment with the consultant diabetic surgeon at the hospital.
Wish you well.
Zapamania peter98873
Posted
Hi Peter thanks for the info. I have reduced the dosage to 1 10mg Jakafi a day. I really couldn't handle the two. I felt toxic and the aches were debilitating. What were your platelets before jak and what are they now? Did the jak make a significant difference? I think Jakafi is only 5 yrs on the market. It's not enough time to know all the long term effects. Linda
peter98873 Zapamania
Posted
Hi Linda,
Prior to Ruxolitinib all my blood counts were very variable with Hydroxy. My platelets went through the roof on occasions and my dosage of Hydroxy was always increased until I was on the maximum dose. This proved too much for me and I was recommended for Ruxolitinib which has stabilised my blood counts and they have since remained at a very normal level so far. They have been fine now for a few months. I have another appointment with the Haematologist in 10 days time. I agree, it is early days yet for the full facts to become known. The Haematologist is delighted with the results. My concern now lies with the side effects. It is a 'wait and see' situation really.
Zapamania peter98873
Posted
Hi Peter I have known that I have Pv for 4 yrs. the first 3 yrs they went up & down with no meds. This year they hit a million. That's when I started HU and couldn't tolerate it. I think I only lasted 3 days. That's when the Jakafi was prescribed. I've only taken 14 pills so I'm very new. But I had to stop the 2 10mg a day due to body aching. The platelets dropped to 785 last week. I'm going to the hematologist wed. I'm afraid of having a stroke or heart attack from a clot. I'm a nervous wreck from this whole thing. I hope I can find the right dosage. This disease is so rare nobody knows what I'm talking about. It's been comforting to find this site & talk to people who get it. Thank you so much for your responses. Please let me know if a side effect shows up that you don't have now. Thanks Linda
peter98873 Zapamania
Posted
Hi Linda. Thanks for your response. Your fears are understood and I would say are shared by most PV sufferers. I have suffered this disorder for many a long year and still survive. Stroke or heart attack can happen of course but if you look after yourself by keeping a sensible diet, some exercise that suits and be guided by your haematologist I would say these illnesses need not be a constant concern. As you say, PV is a very rare disorder and not yet fully understood although treatments do seem to be coming along which will make things easier. It will take time. Unfortunately, PV is something we must all learn to live with but it need not be the demon it seems. Certainly it can be uncomfortable and time consuming with the regular trips to the clinic but a balance will be achieved. You are fortunate inasmuch that you are able to confer with others who suffer the same illness who can allay many of your fears. Yes, your correct drug dosage is vital for you but do bear in mind that each patient is different and their needs different too. I have found Ruxolitininb a far better proposition than Hydroxy ever was but this was really devised to treat leukaemia. Ruxo. is targetted at PV. Try not to concern yourself with what might be but with your current situation and adapt it as you require. Most people live a normal lengthy life with PV, don't let it take over. It is controllable with care and will be relegated to a more serene level as time passes. Wish you well for the future.
Zapamania peter98873
Posted
Hi Peter thanks for your rssponse. Even though I have had Pv for 4 yrs at first it didn't seem to be too much for me. I got my blood drawn every 4-5 weeks and sometimes it went up and sometimes down. I didn't need phlebotomies or any meds. And I felt normal. Just these last few months it started to climb and my plates reached a million. So I switched Drs to an MPN specialist. Then the meds started. Then it became real. I'm in a panic like a delayed reaction. I'm loaded with anxiety and fear. I hope I can get to acceptance as you seem to be at. I'm going Wed to the Drs. I'm afraid my plates rose cause I'm only taking 1 10 mg jak a day instead of 2. I guess what will be will be. Your kindness is much appreciated. Linda
peter98873 Zapamania
Posted
I feel sure your dosage will come right for you. It is always stronger before you find it settles. I take mine in morning with food and in evening also with or after food. Recommended by Haematologist..
Zapamania peter98873
Posted
Hi Peter just got back from Drs. Orthopedic not hematologist. I have a partially torn acl in my knee. When it rains, it pours. I take mine (jak) at night about 7:30. I feel it still. Last night I was getting jumps or spasms in my leg. I know jak comes in 5mg so I was wondering if maybe I could do 5 morn & 5 or 10 in the evening. I go to the hematologist Wed. I'll find out what my plates are. What are your plates at now that you're on jak? Just curious. Also are you in the US or Uk. Linda
peter98873 Zapamania
Posted
I am in UK. My dosage is 10mg twice daily (Morning and Evening). My last platelet count was 770, but this does vary just a little, quite normally. Been stable now for several months. I see no reason why you should not split your dosage as my Haematologist recommended mine. It took several months before my dosage was clarified. Yes I too have other problems to contend with medically but that is another aspect one has to consider. Hope things go well for you Linda. Keep smiling.
Peter.
Zapamania peter98873
Posted
Hi Peter I was splitting dosage at first same as you at first 10 morn 10 eve. By the 3rd day I couldn't get out of bed due 2 extreme body aches. So I tod the dr 1 could only take 1. He seemed annoyed but it's my body. I'm going to see the vampire (lol) tmrw. I'll see what's happening with my plates. I had a feeling you were in the UK. This is a UK line isn't it. Well once again thank you for your response. I'm going to vote today. That should make me smile. What a mess. Be well. Linda
peter98873 Zapamania
Posted
Hi Linda.
I can understand your reluctance to deal with the drugs. I was prescribed Hydroxycarbamide(Urea) for many a year and had become used to the effects, and acclimatised to such a strong offering so really I never suffered when moving onto Ruxolitinib. Both drugs have similar effects on the body. I just could not take Hydroxy any longer, it was wrecking me after such a long usage, so I will not take it again. Maybe you need to start softly on a low dosage and work up to what is good for you. It is the best option available until something different is offered. It doesn;t make things easy, does it?
Good luck with your election Linda, the choice of candidates doesn't seem up to your usual calibre I feel. Hope it all works out for the best.
Peter.
Zapamania peter98873
Posted
Hi Peter I did not like the fact that Hydroxyurea could cause leukemia after long term use. What's long term 3yrs 5 yrs. couldn't get a straight answer. I will see if 1 jak 10mg a day has done any good. Yea this election has sure been one of a kind. I've never seen anything like it. Well I voted for trump cause I do believe Hillary is a liar and a crook. Donald sure don't need anybody's money. So I feel he can't be bought. Once again thanks for responding. I always appreciate it. Linda
Zapamania peter98873
Posted
Hi Peter if you don't mind me asking how old were you when you were dx with Pv? How many years are you dealing with it? I was 60 and I'm in it 4 yrs. Linda
peter98873 Zapamania
Posted
I don't think it is right to say Hydroxy. causes leukaemia. This a possible long-term effect of the illness as was first explained to me by the haematologist at the outset. A normal life span was also indicated with the appropriate treatment. Not many people with diagnosed PV suffer from leukaemia. You should look forward to many good years ahead. I would say that your voters were looking for a change of direction from the norm,
just as ours did with Brexit. As a matter of interest, have you looked at the information on PV included on this actual web-site, other than this forum? It is very informative on PV. Best wishes Linda.