My new Rux journey

[EPguy]

See end for reason for the image.

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I've been on Rux for just over a month. As posted I switched from Bes after the IFN and Flu Vax blew up on me.

I'm at 20 BID (10x2/day). So far nothing bad that's clearly Rux guilty has happened .

I held CHR for three months off IFN. But it's starting to move up since just before starting Rux, last week HCT=45.9, PLT ~430, 1st time over range on HCT in over 2 years. Dr noted my PLT has usually been top of range even on IFN so he's not concerned there. My pre-treatment HCT was at ~46 so my natural HCT may not be that high. I'm about to find out. All other counts ok.

I know Rux can take a while to kick in. Dr is ok with it. My well founded bias is to take it slow. We'll increase the dose at my next appt late May if needed.

I suspect I'll need the higher doses to help with the auto immune troubles. High likelyhood I've got Sjogrens, another incurable condition that messes with salivary glands and misc other things. My bad odds hold firm, Sjogrens is 9:1 women, of which I am not. Jak-i's so happen to be the latest thing in rheumatology. Sjogrens is a known risk for IFN, if any IFN member experiences new dry mouth/eyes, talk to a rheumatologist asap and quitting IFN may be indicated. I believe mine is also part of the adverse vax reaction.

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The Rux pills at $300 each look way too cheap, chalky white. Also Rux is what's known as a "small molecule" drug. Compare Besremi, color part of this image to the simple hexagons of Rux. Bes is a huge biological molecule. Makes IFN more satisfying, paying for all that complexity. But simplicity is always an attribute. All these are silly thoughts with no medical relevance, but it has been on my mind. Incyte must be rolling in the bucks.

[Mostew]

Good to see you are up to posting . I'm always interested in your updates

Best wishes to you

[ainslie]

allegedly with PV 60% need more than 10mg BID and 10%, need less, counts inc Hct but especially platelets can rise before falling. Dr V’s view 5 years ago to me was if counts not falling after 1 month increase dose?, my humble opinion is that might be a twinge gung ho although you can always decrease the dose if overshooting on way down. It’s a pity smallest pills are 5mg but there’s always splitting which we discussed before.

[EPguy in reply to ainslie]

We're likely to increase at my May 30 appt. My Dr feels ok with it for now since the recent HCT rise is not too steep, see plot.

As I posted for the new MAJIC trial the dose there ended up at ~35/day avg.

At this point I don't really care where it lands, just want to feel ok.

Interesting note, my condition blew up right after that extra low HCT reading, my guess is overload of the various IFNs in my body.

hct

[hunter5582]

Sounds like a very reasonable approach to initiating a new med. Patience can be a virtue when titrating meds. In the absence of medical emergency, there is not reason to move too fast.

Given how much RUX costs, one would think they could come up with a more ritzy appearance. Perhaps a gold shell for the pill would be a strategy. Given how cheap meds like aspirin are even with a colored coating, one would think it could be done.

Definitely hear you on the issue of odds and how they play out. been there and done that. I keep wishing my medical odds would transfer to playing the lottery. I would be rich!

It is good to hear from you. Please do keep us filled in on the ongoing saga and what you are learning. We all benefit from your input.

[Mishie14]

thank you for update. I always learn from your information sharing and admire your grasp of every situation. Best wishes the rux adjustments straighten out for you. Stay safe!

[azaelea]

Thank you for your update. It’s always interesting to read your posts . Sending you good wishes for your appointment on 30 th May.

[EPguy in reply to azaelea]

I average multiple Dr appts every month. Used to be just the Hem. My care team list fills a whole web page column. Maybe one of the Drs will finally find what's broken in me.

[George1976]

Did you apply for the incyte copay assistance program?

[EPguy in reply to George1976]

I have that and good pre-medicare insurance, so cost to me is 0. Next year will be the medicare scramble. Still the 300/pill cost is paid by the public in some way and the public deserves a shinier pill.

[Elizka]

I do hope you feel good, respond well and can get on with your life. Fingers crossed! You deserve some good

[EPguy in reply to Elizka]

I hope so too. As in my other reply, it's going the wrong way I'm sorry to report.