integrative doc

[Wendrew]

it’s a little over a year since being diagnosed with PV I’ve been on hydroxy and while side effects are minimal considering I’ve got cancer I’m interested in finding an integrative health doc. Seems that’s like finding a needle in a haystack. I’m interested to know if anyone has found such an exotic creature anywhere on the US east coast…and can recommend same.

also wondering if Rux might provide a better quality of living even though I’m scarred of ‘rocking the boat’.

[hunter5582]

I have been seeing Dr. Martha Calihan in Leesburg, VA, She is in semi-retirement now and only seeing in telemedicine. Here are some lists of Integrative and Functional medicine docs.

fonconsulting.com/resources...

ifm.org/find-a-practitioner/

[Wendrew in reply to hunter5582]

thank you so much for the referrals Hunter ! It’s much appreciated.

[Mirror368 in reply to hunter5582]

Hunter,

Does Medicare and a supplement pay for care with this type doctor?

Thank you for all your information, Eileen

[hunter5582 in reply to Mirror368]

It depends on whether that doctor accepts Medicare or insurance. My doc was private pay only.

[Chicagopv]

I got on Jakafi about five years ago bec the itching was intolerable. It has made a huge difference. My side effects have been some anemia and lowered immunity. It’s very expensive but now there’s a cap on Medicare prescription meds.

[ainslie]

my personal view is Rux may give a better quality of life and may make some changes in the marrow for some, my allele burden is now allegedly down to 1.08% , it’s not clear yet what that really means but I suspect it might be good. If you rock the boat and don’t like it you can always unrock it and go back on Hydroxy, I’ve never heard that happening though.

[Meatloaf9 in reply to ainslie]

AB of 1.08% is great, may I ask what it was when you started the Rux?

[ainslie in reply to Meatloaf9]

unfortunately I dont have a base line

[Wendrew in reply to ainslie]

I’ve got a MPN appt next week. Rux will be a topic. Thanks

[sbs_patient]

I agree. I was diagnosed with PV in 2015, and I became allergic to HU after a few years. I've been on Jakafi for more than two years now, and my condition seems stable. There's some mild anemia, and while constipation had been a problem, it is now managed well with 290 mcg of Linzess.

[ainslie in reply to sbs_patient]

If you are mild anemia is there some reason you can’t lower the dose a bit?

[sbs_patient in reply to ainslie]

I started at 10 mg BID of Rux back in 2022 and became more than mildly anemic. My MPN specialist reduced my dose down to 10 mg daily, and the anemia faded away. This year, I was having night sweats and losing some weight, so my doctor raised the dose to 15 mg; there was some initial anemia, but my HGB is now only slightly reduced and seems stable. I'll see what my December blood work brings.

[ainslie in reply to sbs_patient]

I see, one thing to keep in mind is although the pills come in 5,10,15,20 and maybe 25 mg, it is very possible and common to split them, for example if 10+10 is too high you could try 10+7.5, to get 7.5 , take a 5 and split another 5 to get 2.5mg. I’ve been doing it from day one, I started on 2.5+2.5, I couldn’t tolerate more (which is extremely unusual) and increased the dose by 0.64 mg a day, that’s a 5mg split in to eighths. Local haems or pharmacists say you shouldn’t to it but I have checked it with several mega experts , it’s no problem.

[EPguy in reply to ainslie]

I looked into splitting them too. I even called Incyte to discuss any coating they might have. There is isn't one and we know these are not time release (see my recent post on Rux XR) so I conclude the pills are pure and simple pressed dust. One can also tell this just by swallowing one. But my Dr also has issues with it. I'm on 10x10 so far so not an issue.

What is your current dose? I recall over 20/day, is that right?

[ainslie in reply to EPguy]

I’m on 22.5+20.

splitting is 100% ok. Some Haems and pharmacists will argue that you can’t split them accurately and therefore don’t get a even dose, it doesn’t matter, if a 10mg splits into say 6 and 4 and your aiming for 5 then if you take the 6 for one dose and 4 for the next dose it evens out. Bearing in mind sometimes docs prescribe say 15mg am and 10mg pm which really is uneven. I think it’s better for the body to have a more even dose such as 7.5+7.5mg.

I’ve checked it with DrV at MDA and my expert at Mount Sinai, they shrugged their shoulders, they get it.

[sbs_patient in reply to ainslie]

I'm taking 10 mg AM and 5 mg PM - so far it's been working well for me. Would splitting pills to switch to 7.5 BID make a big difference?

[EPguy in reply to ainslie]

I agree on the precision, with increments of 5mg it's already loosely defined.

[Saine1]

I have been seeing Dr Alicia Hollis in Roanoke, VA for about 6 months. Certainly has helped my gastro issues!