After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly no. I started it in May taking 20mg per day. Within a week I had dizziness Which started about an hour of taking it. It's so bad I tripped and fell not seeing the uneven road. My right leg is badly cut and still not healed after 6 weeks. I live upstairs and I am worried about going out. Also my platelets rather than going down have gone up. 750 before now 983. Lastly several times I haven had pains in my chest Which I was afraid was a heart attack. I have told Guy's who I'm under Prof Harrison but side effects ignored and dose doubled. Has anyone else had these side effects?
Side effects of JAKAFI: After severe side effects... - MPN Voice
Side effects of JAKAFI
Sorry to hear about yet more adverse effects. Dizziness is one of the know adverse effects of Jakafi. Dose adjustments are based on patient response. online.epocrates.com/drugs/...
Hopefully others who have taken Jakafi will weigh in on their experience with it.
I am not sure why your dose would have been increased when you had an adverse effect that resulted in an injury. I would be sure to follow up with Guys, specifically with Dr. Harrison if she is your physician. This is not something that should be dealt with by the the nursing staff.
Hope you get answers soon.
Many thanks Hunter. yes I did read it is one of the side effects but was told it would ease off.. Mine hasn't after 3 months and some days much worse like today when I can't move around at all.
It may be that you just cannot tolerate the current dose. That is one of the challenges of managing a MPN. We are all different in how we present and how we react to the meds used to treat. I hope you and your care team at Guys can find a more workable solution ASAP.
For what it is worth, i did not tolerate HU either but have been responding well to Pegasys.
All the best.
Hi Heather, my platelets went up and 20 lbs weight gain while on Jakafi. I was put back on hydroxyurea with alternating doses.
I assume you were previously on HU and came off it for some reason. I was the same but side effects of JAKAFI much worse. Thank you for your comments.
Hu has caused me gain a similar amount... Interferon had the opposite effect...
Can any one advise please what is the common starting dose . My dad is 79 will start jakafi for the first time and I am now worried after what I have read!Thanks in advance
In view of your father's age I would recommend 5mg twice daily. If tolerated ok it can if necessary be increased. In my experience the majority of consultants start at a high dose which the patient can't tolerate and they are then reluctant to reduce the dose. They don't seem to consider quality of life. I was started at 15mg twice daily and was admitted to A&E due to side effects. Pains in chest pulpitations. It took quite a battle for consultant to accept it was caused by Jakafi and get it reduced. Also a warning if your father has ever had a skin cancer. There is a warning on the instructions. That's why I had to stop it. I had several BCCs due to Jakafi. Hope this helps. Good luck.
Sorry I'm responding to this post so late...I recently started on Jakafi to drive down my platelet levels. My oncologist errors on the conservative side given my sensitivity to medications...(2) 5mg tablets daily. A typical starting dose is 10mg (2) daily with weekly CBCs drawn as well as seeing my oncologist every month to monitor my response. I have an RX for 6 months at which time I'm sure the dosage will be reevaluated and increased if the numbers aren't budging. Again, I'm not typical with my sensitivity to medications, so less is more for me.I have tolerated it well so far and within the short amount of time I've been on it, my energy level has increased and the inflammation in my body has decreased. My major complaint is the extreme constipation which started immediately upon taking the drug!
All these medications have side effects, it's finding the one that works well and is tolerated. I originally started on HU and the side effects from it were not well tolerated by me.
Good luck to your Father.
I was only dizzy for a few days when I started 20mg a day. No other side effects and apart from white count still in mid 20s it's been good. Spleen shrank a couple of cm eliminating the pain I had previously been suffering on the left side.Carol.
Many thanks. It's good to hear that it works for some.
The grim side effect I had on Jakafi was aggressive skin cancers - not spotted or treated early enough Now recognised as a serious problem if you have had sun exposure before. So do keep an eye on any non healing lesions. Use lots of sun block. Covid masks help.
Hi, Heather, sorry you are having so many problems with Jakafi. In 2016, my previous doctor took me off of HU and put me on Jakafi. At first, I thought it was a miracle drug because I felt so much better on it. But after a while, my hemoglobin started to drop and my platelets started to increase. I became very lethargic and dizzy. I finally changed doctors in 2019, and she immediately took me off of it. But, in my case, I found out I had progressed to Mf, intermediate 1. But there could’ve been several factors in place as to why I came so lethargic. My doctor thought the Jakafi may have contributed to my anemia.
Hi. So sorry to hear you have progressed to MF. That's one of my concerns. What medication are you on at present. If I wasn't such an active person I could probably cope better except for the dizziness. How People work with the desease I Will never know. I really do admire them. Heather
Hello Heather. I have PV and ET and was on Hydroxy in 2019, but didn't tolerate well. I tried Anagraline, but it gave me heart palpitations, so Dr. finally took me off and put me on Jakafi about 1 1/2 years ago. I started with 10 mg twice a day, then 15 mg, and now 20 mg. twice a day. I too had some dizziness and headaches, but they have subsided now. I still suffer with extreme fatigue and breathing problems, but Jafaki has brought my blood levels down, except for platelets, which stay in the 500-600 level. My worse complaint of Jakafi is the fatigue, weight gain of 20 -25 pounds, and getting out of breath. I am also on a statin for lowering my cholesterol, which is due to the Jakafi.
I think all of the medications for MPN's affect each of us differently, and I hope you get to feeling better soon. I am so sorry for your fall and please be careful. Broken bones at our age are serious, so take it slow. Wishing you good feelings!
Hello Buggerbear. Many thanks for your comments which made me look at the instructions for my dosage. I think I may have the answer to some of the side effects. I have been taking the wrong dose. Rather than taking 1 10mg tablet twice a day I have been taking 20 mg twice a day.. Many thanks for pointing out the dosage. It probably won't help with the fatigue but hopefully with the dizziness. Not sure how I made the mistake but Many thanks.
Sure hope it helps!! i think the dosage makes a big difference and hope you are feeling better!!
I’m so sorry to hear of your plight. I too am under Guy’s. I take solace in that fact.
It is quite common for platelets to rise on Rux before coming down again, mine went from 600 to 750 for a few months then slowly fell and now are 230.Dizziness is a possible side effect, definitely discuss with Clair Harrison, it may work to start at a lower dose and build up slowly, I couldn’t tolerate 10mg BID so started on 2.5mg BID and am now at 17.5mg BID and doing well , I have PV
Many thanks Ainslie for your comments. It's all very strange as my platelets have risen significantly and side effects much worse so my dose has now been increased from 20mg to 30mg BID. I have lost weight 6kg with loss of appetite.. When I told Guy's they gave me anti sickness tablets and Lansoprazole. I am so disappointed as I had such high hopes for this very expensive drug.
My platelets reduced when i went on Rux, from averaging 400 they are now 150 ish each time.
The main side effect i had was weight gain (There are some claims this is due to the spleen shrinking meaning appetite gain but definitely not in my instance). It did stabilise and i have managed to lose some again since but not to the weight i was yet.
I did get shingles within weeks of starting which is common too, so anti virals can help prevent this
Paul
I’ve found that drinking water helps tremendously. More than i ever imagined. I’m discouraged too but please drink as much as possible. It dilutes your blood and also dilutes the medicines and extra cells in your organs. It’s the single best thing you can do. Good luck to us. 🌹
Sorry to hear about your dizziness. I've had occasional bouts, accompanied by feelings of nausea, but your comment about your leg not healing struck home with me. I tore a ligament in R foot and leg almost 7 months and have been in pain and limping since. It's impossible to prove to medics that Rux is the problem but I'm pressing for a change, having tried to come off Rux and suffered some unpleasant side effects.
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