harrishill1
Posted , 3 users are following.
Thanks Peter. I feel much better about asking my Hematologist to recommend Jakavi. It seems that the side effects came on after ten yrs on Hydroxy. At first I was fine. Then lately, was getting blisters in my mouth whenever I ate cinnamon, or any other spice even in small amounts.I also get csnker sores, but that has been a problem most of my life. I am also more tire than I shd be, and my head sweats on every exertion. I like to clean the house, vacuum, etc. This chore seems to be the cause of much head sweating. I hope to see some improvement in overall well-being with Jakavi. harrishill
0 likes, 2 replies
margo82957 harrishill1
Posted
I have been on Jakfi for 2 yrs. So far ok. The correct dosage is very important. I am on 5 ml twice a day. Hope this is good info for you
peter98873 harrishill1
Posted
Hello Harrishill,
You seem to be following a similar path as I did with Hydroxy. I took it for about 14 years but it reacted long before this. The small mouth ulcers etc can be treated with a suitable medical mouthwash. I never experienced the sweating problem but that just goes to show how we all differ. Hydroxy seems to work well for several years but as time passes its effects become less and it does not control the PV etc. Hydroxy really is a makeshift treatment where MPN's are concerned. It was, and still is, a good treatment for leukaemia but with PV etc it is another matter. Jakavi is specifically to treat MPN's. Do be aware that following chemotherapy treatment one can be affected by Neutropenic Sepsis after a couple of weeks. The symptoms are very similar to flu with headaches etc. Anything like this needs medical attention urgently and is dealt with by anti-biotic treatment. If neglected can be quite severe. This is something anyone taking chemotherapy treatment should understand. I wish you well with your next Haematology visit and hope you achieve your Jakavi solution. Once started the doses are large but reduced quickly, as is necessary. The improvements may not be felt immediately but I am sure you will receive all necessary information on this subject. Good luck.
Peter.