hello everyone,
it’s official, I start Jakafi ( or Jakavi) by the end of the week. The hospital pharmacist called me today to list all the possible side effects. It scared me a little. Can anyone who use Jakavi tell me about there experience. I am most worried about the diarrhea, head achète, infections and weight gain.
Thank you
Marie
Hi Marie-jos,
I have been using Jakavi (UK) now for about 3 years. I can't say that I have noticed any unusual side-effects from this, particularly after using Hydroxycarbamide. I consider Jakavi to be a much better drug to use. The infections will come if your immune system is weakened which was a problem with Hydroxy. Weight gain has not been a difficulty and I feel that a little care with your food intake will deal with this problem. I remain much the same and diarrhoea hasn't troubled me at all. The head achete hasn't arisen. The lower the dosage you need the better you will find Jakavi. I am just about on the lowest dose, such is the improvement to my well-being it has made for me. I know Zapamania has found one or two difficulties with higher doses of Jakavi but this is something personal to her. She lives in US but admits she suffers from many drugs she has used but not so much with Jakavi. Dependent on the initial dosage you are prescribed (it takes a while to settle the right amount) it is very possible you will find a lesser dose becomes the norm. The improvement to my well-being has improved immensely. Hope this helps. Bear in mind that Jakavi is a recent drug and the longer term effects are unknown. Best wishes.
Peter.
Hi Peter,
It does help to hear from your experience. I will start at 10mg 2X a day. I’ll try to keep you informed.
Thank you
Marie
Hello Marie-Jos,
Your dosage is exactly the same as I first started on with Jakavi. It took about 18 months before any positive effect was revealed and then enabled the dosage to be halved. (Better on the pocket too - whoever pays). With these MPN disorders each person is very much an individual and will find their own values and differences. Thanks for your message. Wish you well.
Peter.
Hi Marie I am on Jakafi for 14 months now. I only lasted 5 days on HU. My original dosage was 10 mg 2 X day. It proved to be too much for me. I have a lot of drug sensitivities soI'm not surprised. I've settled with 15 mg. I haven't gained any weight. I was having ocular mingraines prior to Jakafi and haven't had one since. No headaches at all. Some digestive problems, but again, have had ulcers in the past. No itching, all gone. No infections. No more night sweats. All in all, I am doing ok on it. My hematocrit is at 38 my platelets still a little high at 637. As Peter has said, we are all different. I wish you success. Please keep us posted.
Hi Linda,
You seem more like your normal self in the reply you sent to Marie. Do hope you are better now and looking forward to the coming break. At the moment I feel as well as I have been for many a time, I just hope it isn't the lull before the storm. There is no doubt that Jakavi offers a vast improvement over time and it should become more generally available for many others in due course. It is good to hear that you are also somewhat more comfortable with this too. Have you resolved the PV-ET irregularity yet? I haven't used the private section for a while as there has been little to relate. Good wishes and stay well.
Peter.
Thank you, it’s very encouraging. I had the same symptoms you did. Itching, ocular migraines, but they stopped as soon as my numbers went down with venesections. On hydroxyurea, I had my first migraine since (a bad one). You and Peter are encouraging me. Had my first Jakavi yesterday. I’ll try to keep you posted on the forum. I talked to haematologist about the forum and he asks me about what I read. I’ll certainly report that conversation, especially since he doesn’t have a lot of patience on Jakavi.
Thank you
Marie
Hi Marie,
Having read your conversations with Zapamania I would say it is not surprising that your haematologist doesn't get much feed-back on PV etc as this is so rare that patients are hard to come by. As a haematologist your specialist will perhaps see more of these patients than most general doctors but a vast vein of information is not available to them because of the rarity mentioned. This is one reason why I try not to speculate in my offerings but stick to the facts as I see them. In this way it provides a more accurate reference for both patients and any medics so interested. The amount one can learn from a good forum is important. Will hopefully be able to follow your posts in the future. Like you, I am a patient. Good wishes.
Peter.
Dear Marie,
I am currently taking Jakafi 5mg two times a day. This is the third medication that I am trying. I was on Hydroxyurea first and was on it for two weeks before the side effects hit. They switched me to a drug that started with an Ang.. I was on it for about a week when the side effects started and I had to be switched to the Jakafi. I have been taking it now for about six weeks. The side effects have started and they are hitting me hard. I am having diarrhea, night sweats, headaches, constant feeling of moving in my head, dizziness, frequent UTIs, bloating, and blurred vision. I had to tell you about the first two drugs where I could also say that I am allergic to almost everything under the sun. I wish you lots of luck on your journey.
Marie