Jakafi and H/H PCV

[JeanieRN]

Hi Everyone,

Hi Everyone,

I was on Jakafi for about 5 weeks. Labs were fine 2 weeks in and then 2 weeks later Hct/hemoglobin dropped to 36 and 12. I usually run 40-42 and 13-14. Was feeling exhausted and nauseous. Saw my MPN specialist and went off Jakafi as I just couldn’t function with this extreme fatigue. I was only taking 5 mg twice a day, but it really dropped my Hct. I have never been that low. Has anyone else experienced this? So discouraged as I have 3 kids to care for and I am so exhausted. Getting labs drawn again tomorrow.

[hunter5582]

Sorry to hear about the struggles with Jakafi. You have certainly been through the medication mill. It is, unfortunately, a matter of trial and error determining what will work and what can be tolerated. The good news is that there are more potential treatments in development.

I am wondering if you have considered the clinical trial of rusfertide. It might be worth discussing with your care team. This article was just recently posted. onclive.com/view/rusfertide...

None of us would have any way to know whether rusfertide is an appropriate consideration, but if Besremi and Jakafi are both not going to work due to adverse effects, it may be worth considering. Your MPN care team should be able to give you feedback on your options moving forward.

Wishing you all the best.

[JeanieRN in reply to hunter5582]

Thank you Hunter! Your thoughts and knowledge is always appreciated!

[EPguy]

I recall you've gone from Bes to Rux as have I. My immediate reason for the switch is hope for auto immune function relief, Rux can be good for that.

If you are not on therapy your HCT would go over range is that right?

If so you could benefit from a dose of Rux that is not available, something less than 5. It does need to go 2x/day since it is too short acting otherwise.

They say one shall not split the pills, but I've looked into it, asked mfg and pharmacy, and can't find a reason for this other than their need to max our cost. If you could take a 2.5 dose (not allowed) it might get you the result you need, but this will not be approved by your Dr so it is unfortunately not an option. In contrast Bes can be dosed smaller if Dr and patient agree.

I hope to post more thoughts on this later.

I'm on 10mg just starting and will know next month how that is working. I know on HU I got droopy wen HCT went too low.

[JeanieRN in reply to EPguy]

hi! Yes i just switched from Besremi to Jak in Feb.. we did talk about a lower dose. But honestly aside from the autoimmune and depression issues, I felt so much better on the Besremi. I now constantly feel nauseous and e rely fatigued. Going for my labs this am. I will keep you posted.

[sbs_patient]

Your experience is somewhat similar to mine. I started Jakafi in August (10 mg twice a day) after 6 years on HU. Platelets and HCT quickly fell to normal levels, but hemoglobin eventually fell to about 10 and I started to feel very tired. Reducing the dose to 10 mg once a day seems to have solved the problem for me, though I will be getting blood work again soon and hope things remain stable. Maybe 5 mg once a day would be enough for you. Good luck!

[JeanieRN in reply to sbs_patient]

Is your fatigue gone with decreasing your dosage?

[JeanieRN in reply to JeanieRN]

did it take long your homeglobin to come back up?

[sbs_patient]

My hemoglobin was 14.8 when I started Jakafi in late August. It went down steadily, reaching a low of 10.0 in early November. My dose was reduced gradually, from 140 mg/wk, first to 100 mg/wk and finally to 70 mg/wk. Hemoglobin came up steadily, reaching 13.6 in late February and 13.4 in late March. We'll see what the next blood count will show. My fatigue diminished as the hemoglobin number increased, and I feel that I'm back to normal at this time.