Rux Experience at 5 weeks

[George1976]

Started Rux at 10mg twice daily 5 weeks ago after MPN specialist suggested it might help with my non-specific symptoms she thinks may be related to my Type 2 CALR ET that came on when I stopped Peg 2 years ago. Bumped up to 15mg x2 - two weeks ago because platelets were going up every two weeks. I have already tried Anagrelide, Peg then HU. Only Peg has been intolerable. HU was ok but it was not helping my non-specific symptoms such as a constant sick flu headache that often feels like the inside of my head is being stretched with a painless throbbing, weakness and numbness in my feet and a strange burning and gripping feeling across my back in different spots on a daily basis. My platelets went from 620 5 weeks ago to 820 as of last week and I was just about to throw the towel in but my hematologist thinks I should go another couple weeks at least. My platelets have stabilized at 820 but the numbness and burning in my feet is worse than ever, tingling in hands worse too plus some burning on the skin of my arms. The sick flu feeling in my head is worse too. At first i felt euphoric. It was almost fun to take them. The euphoria is gone now. Also strangely feel much worse if I take vitamin D or B12. Seems weird but through process of elimination I figured that out. The only think “better” is the horrible pain I was getting in my abdomen is gone. Good chance I’m going back to HU soon. I read on a John’s Hopkins website someone having luck with Molotinib. Maybe try that, I don’t know.

[EPguy]

I share some of your specific "unspecific" symptoms as I've been posting. Mine seems to been triggered by the flu vax while on Bes. I'm also 5 weeks in on 10mg BID Rux. I also have the same fibrosis level Dx.

Today is an example of the unlivable sort. Likewise almost anything I try to take makes things worse. I just had a bad experience with high dose glutathione. Curcumin might help some.

Others and online reports have noted Rux can take quite a while to kick in. It's supposed to help with general inflammation that causes these unspecific things, I'm truly hoping Rux can help there.

[George1976 in reply to EPguy]

One interesting improvement cutting through the fog of these crazy symptoms is a hint that working out is beginning to make my muscles sore again after these 5 weeks on Rux. Since stopping peg 2 years ago, no matter how many weights I would lift or push-ups my muscles would not get sore. Just maybe the Rux is tamping down whatever process was preventing that. Two neurologists have suggested I may have an immune problem causing the neuropathy.

[EPguy in reply to George1976]

I agree on the immune problem. I likely have Sjogrens, an autoimmune condition. Likely it was aggravated by one or both of the IFN and the flu vax.

For immune questions you'd want to add a rheum to the team.

Re strange effects from IFN, my distance eyesight remains nicely improved since I took and quit IFN.

I was getting back to exercise, but things have gone worse last day or so and I can't do much of any physical stressors. Depressing.

[hunter5582]

It sounds like you are really going though the medication mill. With a CALR ET in the absence of a history of thrombosis, you may want to focus more on the symptoms than the platelet levels. I would wonder about a combination approach. Perhaps consideration of a clinical trial like Bomedemstat as well. Momelotinib is pending FDA aproval last I heard. It will likely be approved for MF, with a particular indication for MF with anemia.

With a history of neuropathy, you would want to be careful with HU as peripheral neuropathy is a known serious adverse effect. Based on your previous post, would definitely suggest contacting a major hospital center with both a MPN Center and advanced level neurology departments. What you are describing requires a very coordinated care team with the right specialists working together.

Wishing you all the best.

[ainslie]

it’s common for platelets to rise initially on Rux before falling, mine went from 600 to 740 and are now 190, some jump more. Your Haem should know that. I have PV