Hi, just looking for some advice and thoughts from those of you with knowledge or experience with Rux for PV. I have been on it now for approx 8 weeks. It has brought my WBC down really well to just over normal range (12) and red cells and platelets remain in normal range (as they were on Hydroxy). Despite this my haematologist wants to increase my dose and to get the best effects I should be on the highest dose I can tolerate. I'm having trouble getting my head around this as the way I think of things, I should be on the lowest I can tolerate! Is it usual to try and go for the highest dose and why?
My other question is around chlorestoral tests. I have asked for regular testing but there is some reluctance to take responsibility. My GP thinks Haematology should be responsible because it is their prescribed drug which can cause the side effects. Haematology are not equipped to understand the chlorestoral results so although they can order the test, they cannot read or advise on the results, therefore they are reluctant to do it. Plus if my chlorestoral is found to be high, I have been told they would not take responsibility for managing this.
There are also different acceptable levels of chlorestoral depending on if you are high or low risk. My GP would consider me low risk based on their risk factors but my Haematologist would probably consider me high risk because of my MPN and taking Rux - so which figures would you use to benchmark?
They both seem to think that an annual chlorestoral check is sufficient but I feel it should be more often if it is a side effect of Rux. How often are others on Rux tested?
Even if I do get regular testing, I don't feel very confident that the results will be read and understood correctly in relation to my personal risk factors.
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Educated and Assertive patients receive higher quality care. Passive patients do not. This is a situation where you need to be your own case manager and best advocate. Your treatment preference needs to drive the dosing decision. If your preference is to use the lowest dose needed for a complete hematologic response, then that is the the dosing strategy to be used. It may be that some on your care team want to see a more rapid response to splenomegaly or JAK2 VAF, but it is your priorities that must drive the dosing decision. Likewise, your risk tolerance is a driving factor in your treatment planning. It would be ridiculous to ignore the risk of hypercholesteremia. It should be monitored at a frequency indicated by your profile. Typically, this would be every few months until your response is clear. From Incyte "Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jakafi, and as needed." jakafi.com/chronic-graft-ve...
We each must be our own best advocates. Suggest you be very cler with your csre team about your very reasonable expectations.
What dose are you on and what dose does the doc want you on? I'm on 5-10mg/day and it lowers my resistance to infection. I don't know if that's your experience.
I am on 10mg twice a day - I was told this was the lowest dose. I am not sure about whether it has lowered my resistance to infection as I have not been on it for long. I have just had my covid booster and I got no side effects so I wondered if it had actually worked.
Thank you Hunter. I think the problem here in England is that there never seems to be an holistic approach to heathcare. Healthcare professionals do not talk to each other and are forever pushing back to another professional: GP to Haematologist, Haematologist to Cardiogist etc. If it is outside their field they don't want to know. The patient is not the centre of the care and the fact they should all work together to get the best outcome seems to go over their heads. It isn't just the professionals involved, it is a major flaw in our healthcare system and I've seen it many times before with relatives and friends. If only we could get them all in a room together then we would be getting somewhere. The best you can expect is a letter from one professional to another which takes weeks and is generally ignored.
With regard to the dosage, I think they would allow me to make my own decision. I am just interested whether others have had the same experience. Rux is very expensive compared to Hydroxy but I now have two separate haematologists very keen to get my dosage up (Im currently on 10mg x 2 per day) and I am puzzled why when (in my opinion) my bloods are looking good. When I asked I was told that it would be good to see if they good get an even better response, get my spleen size down quicker and see if it makes me feel even better, even though I feel reasonably well. So I guess I was wondering if they suspect that there are more longer term benefits from taking a higher dose. Unfortunately, they don't seem to understand the risks associated with high chlorestoral and blood pressure.
Hi From what you say would perhaps an MPN specialist be a next step for you - that s/he would consider the whole picture, ie all your concerns? The best of luck to you in getting this sorted to your satisfaction.
While some healthcare systems seem to work more holistically and collaboratively, it is always up to the patient to ensure that we receive integrated care. We must be our own case managers and best advocates. I require that my providers work collaboratively and consider all aspects of my health, including consideration of areas outside of their area of focus when needed. This is usually not a problem, but if it was, that provider would be off of my care team. I accept that I must be the one to convey information between providers and actually prefer to be the one to do so. That way I am assured that the information needed to collaborate is relayed.
Thank you. I do stand up for myself but it can be like banging your head against a wall sometimes! I would probably get better collaboration if I went private but there is no way I could afford that. You don't really get the opportunity to remove people from your care team under the NHS - if fact it would be amazing to have a team!
With my IFN blowout, I'm with the lowest effective dose for any drug we take. An exception is some short term treatments that use high doses to fix something. We take long term doses.
Rux can take a while to stabilize, as with IFN, so an increase so early is strange. What is your dose and Dr's proposed dose? What is your trend on the WBC? If it's rising that could be Dr's reason, otherwise it makes no sense.
From what we know of Rux its sides are proportionate to dose, IFN can be less predictable here.
You bring up good subject on cholesterol and Rux, it's not addressed enough. I've had no guidance on cholesterol. I didn't get reading at start of Rux, but it should be standard procedure. I find mine has increased from IFN days, both good and bad cholesterol, while trigly is down.
I agree we should get regular checks at least until/unless it reaches a fairly steady value. This is a GP sort of test, and GP is supposed to watch the whole picture. I just sent my GP an inquiry.
I'm not aware of unique risks for MPNs vs others for cholesterol, but it does seem reasonable there could be one.
This discussion provokes a look at MPN and cholesterol. This is one report:
" The serum levels of total cholesterol, ...were lower in PV than in non-PV patients"
I think this was for blood counts not controlled. ("erythrocytosis patients") Could be another good reason not to over do the Rux dose and over control the counts.
Hi, thank you. Yes it makes sense that side effects will be proportionate to dosage. I am currently on 10mg twice per day. They said this was the lowest dose but I am not sure what they are thinking to put it up to, I am guessing 20mg twice per day. I have managed to persuade the Haematology department to take a full chlorestoral reading at my next blood test but I think then I am going to have to put in an e-consult with my GP to ask them to try and access the results and then comment on them. Only thing is, they will read the results for an average person of my age and not take into the account of the additional risks of PV because they don't understand PV or the additional risks.
Going forward, the GP only does routine chlorestoral checks once per year as part of an annual health check, which doesn't seem enough. As for blood pressure - no one has thought about that so I am asking the blood nurse to take that every time she takes my blood test. Again, though she gives me the results as if I am a "normal" person without any additional risks and those blood pressure results do not get reported to anyone because it is only me asking.
I recall in some of the early trials they found no effect with 5mg. But I'm not sure if that was for MF or PV. Anyway as a way to get multiples of 5 is makes sense to use 5's if helpful.
My GP just replied and said he's aware of the Rux effect but since I'm not on statins etc we don't need to follow chol too closely. He suggests to check in the fall. I will also ask my MPN at the visit soon.
I meant to add that previously my WBC was up to around 40. Just prior to changing to Rux my Hydroxy was upped to 2 x 500mg daily and this brought my WBC down to 23 which was the lowest it had been for a couple of years. my first blood test after 2 weeks on Rux showed WBC as 13 and my 2nd test down to 12. I am due my next blood test next week.
I started on 5mg twice a day and after 6 weeks have been put up to 10mg - I have liver issues caused by PV and they wanted to check it didn’t make a difference to my liver function. Had to have a venesection since being on it - they’re trying to balance it so I don’t need them longer term. If you’re in UK there is a Novartis lead helpline with nurse specialists - you could ask them for advice. I haven’t had a cholesterol test for a few years so will ask for one in another month or so. Have to say I can’t fault the haematology team at my nearest hospital.
First thing is 8 weeks on Rux is not long, it may be as the months go on your counts will lower on the 10+10 and your spleen will continue to shrink, that can be easily monitored.That was my experience on Rux.
You don’t mention what your counts are? but if all other factors are equal I am not convinced of the benefit of raising the dose so soon if at all. Although there is no evidence yet I suspect less drugs the better unless you need them.
I am on 20+17.5 Rux for PV for years and even adding 2.5mg a day can lower counts too much. So if your doc insists on increasing the dose it could be just 12.5mg+10mg, you get 2.5mg by halving a 5mg pill. Run that for a month or two and check again. Some docs don’t like splitting them but I’ve checked with several experts and it’s perfectly fine, I’ve done it since 2017.
As usual if in doubt try to get a consult from time to time with a MPN expert (and now is a good time) who can set direction and write your local Haem, might ruffle some feathers but your treatment should be the absolute priority not sensitive egos.
Re cholesterol, shocking no one is taking responsibility, since diag in 2010 only one Haem asked what my cholesterol is and I’ve seen many experts, never tested or mentioned, so maybe it’s not so important as we may think, depending on level of course. My cholesterol runs about 6.5 + but nobody including my cardiologist seems concerned because my HDL is high. That’s not advice for anyone else though.
It’s your health so it’s essential to be assertive and get clear justification from you doc to justify his reasons for increase and if you don’t like it you don’t have to do it.
Thank you. It's interesting that I was told I am on the lowest possible dose. My gut feeling was that wasn't correct. My platelets are in the normal range (about 300 ish I think) but I do have to be topped up with iron now and again so I wouldn't want to go to heavy and be reliant on iron long term just to balance out the effects of Rux. my liver wasn't too happy on Hydroxy and although that has improved, increasing the dose of Rux could affect my liver again, so I am not keen.
I did get to speak to an MPN specialist who suggested Rux but they were not keen to take me on as a shared basis so I only got one opportunity to discuss and was then handed back to my haematology team.
That makes sense on anemia. However if PLT is out of range there could be a trade off there. I'd guess letting plt go high (~600) is better than overdoing the RBC suppression. My PLT is ~400, HCT 42-43. I'm sort of hoping HCT goes too low for an excuse to reduce my 10x10 dose. On IFN my PLT was 200s.
My last bloods were 395 platlets, HCT 35, Hb 110, WBC 12. Now taking a weeks course of iron tablets but even on Hydroxy I used to have to do that every 6-12 months. In order to try and control my WBC I had to take a larger dose than I would for my red cells and platelets. Interesting you say your platlets have gone up on Rux - mine were previously in the 200s too.
This is the plot of my PLT. The left half is on IFN, right on Rux. A clear change. HU was in between. That lowest point was at the IFN blow up.
You do have a tight balance to hold. It would be nice to have a good med specific for each blood count. Rusfertide may be that for RBCs, but that would not help your situation.
Makes sense on the count priority. I suspect my values are steady state at this point with 1+ year on Rux. But PLT has been my main count trouble from the start, part of my ET like MPN.
You are your own patient advocate! Always ask questions and if you are not happy with your answers, then pursue even more! I take Besremi and 5mg of Jakafi( yes, there are 5 mg tablets )twice daily for itching, and my MPN specialist does an CBC and BMP(basic metabolic panel) every 2 weeks! I am very pleased that these numbers are checked that frequently so that if something shows up, it can be addressed sooner rather than later. Try your best to consult with a MPN specialist. It is worth the effort! Good luck with your journey.
I was treated for high cholesterol before I was on rux - it is probably familial as diet had no effect on it. It was always prescribed by the GP as I remember the haematologist, to my surprise, said he wouldn't deal with it when I first asked to be tested. A year or so after I was put on rux though a new haematologist asked for it to be checked during the routine blood tests which are done at the GPs. It had gone up so dose was adjusted but again by the GP. I periodically ask for it to be retested but it certainly isn't done on a regular basis.
Thank you. That is useful to know. I would quite like mine checked fairly regularly whilst I am having my other bloods done and I will certainly push for it. It is finding someone to understand and read my results in the context of my risks that is the tricky bit!
I started on Jakafi in August 2022 after more than five years on HU. My initial dose was 10 mg twice a day. That quickly lowered HCT and platelets, but also soon made me anemic. My dose was gradually reduced to 10 mg once a day, which brought my HGB to near normal while still keeping HCT and platelets under control. My cholesterol levels are checked roughly annually by my GP, and they've remained low; note, I've been taking 10 mg of atorvastatin every day for about 20 years.
We see here Drs have different opinions on cutting Rux pills. Mine is against, although I've had no need to address it yet. I'm near certain there is no coating on these pills, they taste bad and feel chalky like uncoated aspirin. It's explicitly not a sustained release. I've researched the ingredients. So there should be no contra indication for doing so.
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