Jakavi

[Mudmaker]

Hi Denise here again. Has experienced a weight gain while on Jakavi. I have been on and off it for past fifteen months due to side effects. I have put on over a stone in weight and find it very hard to shift it My blood pressure has gone up and my medication has been increased and a new medication added.

[Anouchka]

Hi Mudmaker, what is the medication you are on? Since they increased my dosage of Jakafi I have had to keep a very strict eye on what I eat (esp with sugar), and find some daily mild exercise (at 74 yes of age) helps. Hip you can find a happy balance fort yourself too and get back where you want to be.

[Mudmaker in reply to Anouchka]

Hi my Jakavi dose has been put down to 10ths twice a day. I was on 15mgs and 20mgs at night but had a lot of side effect. My appetite has increased and I have put on over a stone in weight.

[Anouchka in reply to Mudmaker]

yes, I read that and understand your predicament. I’m on 20mg and that’s when I found my hankering for sweet things increasing and I was more hungry. I’ve ended up curbing it all and am keeping at a stable weight… good luck finding your best way to either lose or remain stable.

[Mudmaker]

Thank you.

[Buggerbear]

Hello Mudmaker. I have been on Jakafi for over 2 years and my weight has increased as the dosage goes up. I am taking 15mg twice a day and alternating with 20mg the next day. I have asked my doctor to please lower the dosage but he refuses because of my platlets being 600. I don't think the Jakafi lowers your platelets at all. For me, I stay hungry all the time even after eating 3 healthy meals. I have read the Jakafi affects the hormone leptin which tells your brain you are full. I have asked to try another med, such as bersemi, and my doctor flatly refuses and says it has even more side effects. Good luck to you Mudmaker in handling your weight.

Hunter, if you are reading this, would you supply the link that shows other doctors handling MPN's in the United States. Thanks you!! I really need to find a different doctor.

[ainslie in reply to Buggerbear]

Rux usually lowers all counts dependant on dose and duration, initially it can increase platelets temporarily, eg when I started Rux platelets increased from 600 to 740 for about a month and then fell to currently 200

[Buggerbear in reply to ainslie]

That is interesting...mine usually stay around 600 or so and have not fallen yet. I am hoping. Thank you ainslie!

[PhysAssist in reply to Buggerbear]

Hi Buggerbear,

Not Hunter or EPguy, but I certainly can post the link for you:

mpnforum.com/list-hem./

I agree with your thought process entirely, especially because everything I have ever read about chronic diseases, and these diseases in particular [and all my medical training and experiences in 30 years of varied practice as a physician assistant] say that the patient and the physician/provider absolutely have to be co-equal partners in the care process, because the disease have a very long chronic course, potentially life-threatening consequences and/or complications, and because they require such a long duration of therapy to keep them controlled in order to reduce or prevent harm such that any dictatorial or paternalistic approach is bound to fail.

Best of luck/health/etc...

PA

[Buggerbear in reply to PhysAssist]

Thank you so very much PhysAssist!! Unfortunately, there are only 2 on this list in GA but I would be willing to drive to Augusta if I could find a Dr. that is knowledgeable, respectful, and shows a little empathy.

I have been treated for PV and ET since 2014 and had blood clots in my lungs twice. It doesn't get any better....

[hunter5582 in reply to Buggerbear]

Here is the other list of MPN Specialists. pvreporter.com/mpn-speciali...

Depending on where yo live in Georgia, it may be closer to travel out of State. That is what I do to see the MPN doc at Johns Hopkins. I also have a closer regular hemo-doc - also out of state though.

It is worth doing whatever is necessary to see the specialist who has the expertise you needs and who will treat you with respect and empathy.

[Buggerbear in reply to hunter5582]

Thank you Hunter for supplying this list......I have needed to change for some time now.

[PhysAssist in reply to hunter5582]

Thanks for the additional resource- it turns out that my MPN MD is on both lists!

PA

[Mudmaker]

Thank you Jakavi brought my platelets down vert well but I have had numerous side effect. Bleeding from the bowel,staggering,falling. Nightmares, ringing in my ears which I’ve had since diagnosis in 2005 got worse. Numerous UTI’s.

[PhysAssist in reply to Mudmaker]

Hi Mudmaker,

God bless and keep you- that all sounds horrible- and that's without considering the issue of weight gain...

Best everything,

PA

[Mudmaker in reply to PhysAssist]

Thank you hopefully I’ll do better on Interferon.