Ruxolitinib and Hydroxycarbamide

[Mudmaker]

Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my hydroxycarbamide up. When I was seen they started me on Ruxolitinib I did well at first but could not tolerate higher dose. They were considering interferon but was worried about side effect. One of the haematologists decided to try combining both drugs. I have only been on this. Ruxolitinib 10mgs twice a day and hydroxycarbamide 500mhs every second day. For a month So far so good my platelets have come down to under 500 and all my other counts are normal. So fingers crossed.

[ainslie]

sorry to hear you had probs with Rux high dose, I started on 2.5mg twice daily because I couldn’t tolerate 5 or 10 , this is very unusual. I am now on 20mg pm and 17.5mg am.

I did this by very slowly increasing the dose by 1.25mg every few weeks, that’s 1.25mg in morning only and once I felt okay with the increase I added 1.25mg in evening. Sometimes I increased by 0.64 mg a time. If you split a 5mg into quarters it’s 1.25mg and in to eighths it’s 0.64mg. I did this with a good pill splitter and razor sharp knife. Each time I increased it I felt slightly off so I waited until a week or two until I felt okay and added a little more. It took a while but I got there. I feel very good on high dose, all bloods look as if I don’t have PV , LDH now normal, no itching, no sides at all. Expert haems are okay with pill splitting although less experienced ones and pharmacists can get a bit flustered about it.😀

I mention all this because it seems now experts think Rux and Inf may have some benefits longer term such as lowering allele for some. Also although some inc me had problems with Pegasys many do very well on it so I wouldn’t rule that out.

[Mudmaker in reply to ainslie]

Thank you for your help I didn’t know you could half or quarter tablets.

[ainslie in reply to Mudmaker]

and 1/8's 😀

[MichaelS]

It just shows how everyone is different! I started Rux 15mg twice daily in November 2013. Although the spleen 'disappeared' very quickly, my platelets went from normal to 66, so I was taken off blood tablets for the first time since I started hydroxy in 1983 due to PVR. I restarted Rux in January 2014 at 10mg twice daily and am still on the same dose today. Blood are very good 👍 I hope you can get sorted on a useful medication regime soon too.

[Mudmaker in reply to MichaelS]

Thank you. 🤞

[FG251 in reply to MichaelS]

Good to see you on here again, Michael - and congratulations - if that makes sense - on your 40th year with an MPN! There’s hope for us all 😊

[67Red]

Hi Mudmaker

I am sorry to hear about your problems, I was on Rux for over a year prior to my bone marrow transplant but never had any issues, take care.

[Mudmaker in reply to 67Red]

Thank you. X

[Mandz12]

I only been seen at the hospital when first diagnosed I have my blood test then a phone call At least your platelet count is dropping. X

[-Alexis-]

Just sending prayers that your new medications stabilize things for you. Be well, A.

[Mudmaker in reply to -Alexis-]

Thank you.

[Skye333]

Hi Mudmaker I take 2x25mg of Ruxilitinib daily and tolerate it very well.

I was on the trial for Interferon and tolerated that along side Ruxilitinib but the Inerferon didn’t have the desired outcome for me so was told to stop taking it after 4 months.

Good luck with it x

[Mudmaker in reply to Skye333]

Thank you. Good luck to you too.