Today I picked up my first ruxolinitib tablets, to start on Monday, after the last blood tests are back from the lab. This has been a marathon of nearly a years effort, to get access to Rux.
I will start 20 Mg twice a day and 1 x 300 mg of Allopurinol. I have been surprised to start with this fairly high dose and also needing this allopurinol medication. Have others had this extra medication? Different doctors have mentioned lower amounts of Rux, and I know it relates to platelet counts. I have PMF intermediate 2. Platelets range from 83 to 115. Any advice welcome.
A heartfelt thank you to those who have encouraged me to keep pursuing it. Of course any advice on the latest development very welcome!
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artydutch
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Congratulations on getting access to ruxolitinib as you wished.
Given that you are prescribed allopurinol, I am assuming that you must have gout. Not sure if this was the result of a medication adverse effect or independant of that.
Something to be aware of the the drug interaction between these two medications.
Monitor/Modify Tx allopurinol + ruxolitinib monitor CBC: combo may incr. risk of myelosuppression (additive effects) epocrates.com/online/intera...
This is not to say that you cannot combine these two medications, but close monitoring and possible dose modification is indicated.
Wishing you all the best moving forward with your preferred treatment plan.
Thank you for replying. I do not have gout. It is prescribed for a month, to help the kidneys deal with Rux. As I did not see anyone else on this forum mention this drug, I was curious. I will be monitored weekly in the first month. The enclosed medication info on the drug, does not make good reading, but then they never do…
I do not recall hearing about allopurinol being used as prophylaxis for kidney function when using ruxolitinib. Perhaps others on the forum who have taken gout can speak to their experience.
Please do let us know what you learn. We can all benefit from your experience and knowledge.
Glad to hear you were finally able to get ruxilitinib. I have been on it for 3 and a half years and have Stage 1 MF. I started at 10mg 2x daily and my highest dose was 15mg in the morning and 10 mg at night for 2 months. I am currently on 10mg 2x daily. For me, I have done much better with low and slow. We each respond differently to these types of drugs because of the types of mutations involved.
As for your allopurinol, please have a discussion with your doctor immediately. Since you do not have gout, I would want an explanation for adding allopurinol. Ruxilitinib itself can affect your kidneys.
Good luck - be aware weight gain is a possible side effect and hard to lose weight once you put it on.
Hi. I wonder if it is to prevent gout. I think I was prescribed it for a month when I first went on Hydroxy. The NHS leaflet says it may be used for people with some types of cancer to prevent gout as some medications increase a build up of uric acid. Hydroxy can do this so maybe so can Ruxolitinib? I remember reading the leaflet for allopurinol and being rather horrified but luckily it was only for a month and I didnt get any of the side effects mentioned. Well done for getting Ruxolitinib - I hope it works for you
well done for persisting re getting Rux, some docs do start at max dose for MF and nearly all tolerate it easily, if not you can easily drop down and slowly increase but that’s not usually necessary. I have never heard of a doc prescribing the gout meds if you don’t have gout, it’s not standard to prescribe it just because your starting Rux, I am currently on 20+17.5mg Rux for PV since 6 years and don’t take gout meds. If you need it you need it but I would be inclined to question that one, I’ve never heard of it being prescribed to help the kidneys deal with Rux, my motto is less drugs the better UNLESS they are definitely needed.
It depends on each body but my mom and an old time member here that I know of are taking allorupinol together with Rux. My mother acid uric is always on the high side and her doctor said it is one of the effect of the disease.
My mom and the other old time member both have MF stage 2 post PV. So I believe you have been put on allopurinol to prevent built up of Uric acid. However, your liver and CPR also need to be checked from time to time as this MF and other existing conditions (if available) do impact CBC.
You can discuss again with your doctor for your concern and what he/she wants to monitor for you.
Yes, I was given allopurinol when I first started hydroxy (7 capsules pw, quickly increased to 9 capsules pw). Allopurinol was a temporary addition as a measure to prevent gout due to hydroxy causing sudden increase in uric acid.
I took it for maybe 2 months but really can’t recall exact timing as that was over 10 yrs ago. I don’t recall any side effects and certainly wouldn’t want to experience the pain and physical problems that comes with gout.
I was on ruxolitinib to try and shrink my spleen but had to be on a low dose as my platelets dropped too low. I was then switched to fedratinib. You need to monitor your platelets
While on Hydroxy I developed gout 4-5 yrs ago. I was put on Allopurinol then and never had another gout attack.
My disease Progressed and put on Jakavi (Rux) and left on Allopurinol. I take 20mg Rux 2x daily and Allopurinol 200mg 1/day. I have been on these two meds for about 4-5 years and have no side affects. I am 75 yrs old female and have progressed from PV to MPN over the last 50 years.
Morning my haematologist put me on Allopurinol just for the first month when I started Hydroxycarbamide.
I presume because rapid breakdown of platelets could cause rise in uric acid .. it did help my itchy irritated feet for that time ..i have never been diagnosed with gout .. it was only for 1 month . I don’t think it’s standard practice everywhere.
Glad at last your struggle has brought results keep us informed . L
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