starting ruxolitinib

[caroline_284]

I have been on peginterferon for 5 years with MF. It has worked well with bloods but not with spleen. But my last 2 tests were not so good haemoglobin up to 188. and scan has shown spleen now at 18.8 from 15 last year. my consultant has usually been very positive with prognosis, but this time she would not be drawn when I asked her how it might change. needless to say I came away very anxious and depressed. So now I have started 10mg ,twice a day of Ruxolitinib plus continuing 90 peginterferon once a fortnight. with a venesection booked for tomorrow. I would be grateful to hear from anybody with similar experience.

Thank you, and best wishes to all.

[hunter5582]

I have not had that experience but your description supports a change in treatment plan. Moving forward with RUX sounds like a very prudent course of action.

Wishing you success moving forward.

[caroline_284 in reply to hunter5582]

Thank you

[lizzziep]

My haemoglobin dropped with Rux, now on Momelotinib, sounds like adding Rux is a good idea, and you’re being monitored so any changes should show in your next test. Hope all goes well for you.

[Hidden in reply to lizzziep]

Hi Caroline

I am 4 years on Rux but becoming very anaemic my specialist is recommending a change to momolitinib can you tell me how this worked out for you

Many thanks

Michael

[caroline_284 in reply to Hidden]

I have only been taking Rux for a few days,and had my first venesection today,so I will have to wait 4 weeks for next blood test to see.

[lizzziep in reply to Hidden]

I have only been on Momelotinib for 4 weeks. I had a review at 3 weeks, but it was really to check whether I had any side effects. (Ok, so far) It was a bit soon to say if it was helping haemoglobin (however it had gone up to 81 from 76) I am also on twice weekly EPO injections. I go back mid October so fingers crossed for good results then. I had a call from the oncology pharmacist before taking my first tablet and they really frightened me with possible side effects however I decided to bite the bullet and so far so good.

[caroline_284 in reply to lizzziep]

Good luck with your results.

[caroline_284 in reply to lizzziep]

Thankyou

[caroline_284 in reply to lizzziep]

Thank you

[caroline_284 in reply to lizzziep]

Thank you

[ainslie]

change is always a bit anxiety inducing but it sounds like a reasonable plan, the combo treatment can work well, I would get pretty regular blood tests as the combo can bring counts down a lot and you don’t want to overshoot and become anaemic, I’m sure your doc will be on it, 10mg BID is standard start dose for Rux and can be increased if necessary. Interesting your Hgb is so high with MF.

[caroline_284 in reply to ainslie]

Thank you. Yes she was wondering if it was veering towards PV.

[BeOutside]

Hi Caroline,

Today is day one for me with Rux, also with 10mg twice a day. I am also continuing my Pegasus at 90 mg once a week, so I think we have the exact same regimen! I’m prefibrotic MF and my spleen just hasn’t responded to the Peg either.

It is certainly too early to tell you how I am doing with this, but if I have any wins or losses I will let you know!

Thanks for letting me know I am not alone on this path!

John

[ainslie in reply to BeOutside]

Good luck John

[caroline_284 in reply to ainslie]

Thank you!

[caroline_284 in reply to BeOutside]

Thank you for your reply,it is helpful to know of someone in a similar position. I had a venesection also today but will have to wait for the 4week blood tests.i was just worried when she wouldn't commit herself to any kind of prognosis, where before she had been quite positive. Do let me know how you are doing on Ruxolitinib. Good luck.

[BeOutside in reply to caroline_284]

I will let you know! Day one has been uneventful. I am scheduled for bloodwork next Monday, so I might learn something then. Also, I was put on an antiviral drug at the same time I started the Rux as a precaution. I don’t know if that is a best practice, but I don’t think it will hurt?

[ainslie in reply to BeOutside]

Best get the Shingrix if taking Rux, 6% on Rux get shingles, the vaccine is over 90% effective, it’s a no brainer

[caroline_284 in reply to ainslie]

Also because of now being on Rux I've been warned about skin cancer. Apart from keeping out of the sun when it's hot, does this mean even going for a walk in autumn and winter sunshine? Also I was told to even cover up with hat etc when sitting in the shade .it all seems extreme when I thought a certain amount of sun for vitamin d was good for you?

[RoundTheWorld in reply to caroline_284]

Hi caroline_284. Well worth watching the 'Video of the MPN Voice patients’ virtual forum – focus on Skin Cancer' that Mazcd posted a link to recently.

[caroline_284 in reply to RoundTheWorld]

Thank you.yes it's very informative, but didn't cover what skin protection you need in weaker,autumn or winter sunshine.

[EPguy in reply to caroline_284]

How much protection depends on, for one example, how at-risk you are or were before starting Rux. UV from sun can be still plenty high in the off seasons, in winter for example it can reflect more off the ground and get past a hat. (I try to avoid looking south for long. ) If you have history of sun caused skin damage, skin cancer, other lesions etc points to higher cautions. Also with plenty of exceptions, lighter skin complexion is a risk factor. I have more olive complexion, I'll probably find out someday the implications of that with Rux. The Rux dose also should matter although I'm not sure this has been studied. Your dose is not high, I'm on the same.

You're on a good combination of drugs, Rux may soften some of the effect of IFN, and each adds differently acting benefits.

You're right, very low sun often requires vitamin D supplements. If you have access, a dermatologist may have useful advice on your inherent skin risk. For example they can check with a UV photo to see hidden damage. Areas other than the head also need checking. Regular visits there while on Rux is also a good idea.

[caroline_284 in reply to EPguy]

Thank you.your comments about rux and peginterferon and that the fact that you are also on rux,helped.

[caroline_284 in reply to BeOutside]

I'm holding off my covid booster for a while too.

[Yanico]

hi Caroline, whereabouts are you. I had understood that the rux/pegysys combo isn’t available in England except for trials?

[caroline_284 in reply to Yanico]

I am in Leicestershire. I don't think it is commonplace.but merely the fact that I was already on peginterferon, and these other problems started happening that the consultant said the best thing would be to add the ruxolitinib, because the peg wasn't working well anymore.

[Yanico in reply to caroline_284]

Ah. I too am in Leicestershire in market Harborough. I am under Dr Garg at Leicester Royal but rarely see consultant these days. I have a monthly appointment but sometimes by phone, sadly rarely have the same dr twice.

The combo is interesting, I’ve heard it’s better long term but obvs the situation with Pegasys may disrupt this. Thx

[caroline_284 in reply to Yanico]

I have been very anxious since the peg on its own isn't working well enough and now starting this new ruxolitinib . I just hope it helps.

[Yanico in reply to caroline_284]

I am on jakavi 2 x 10mg atm. Going to increase again to 2 x 15 mg soon. My spleen shrunk to normal but I have become anaemic so I have epo injections weekly. It has been a game changer for me, I was feeling sick and itchy on peg, lost a lot of weight. All gone now, yes I do have weight gain but happy to stop that for nausea!

Good luck with your rux journey .

[caroline_284 in reply to Yanico]

I have lost weight too. Be interested how long the jakavi took to start putting weight back on and also for the spleen to start shrinking. Good luck to you as well.

[Yanico in reply to caroline_284]

I started gaining weight immediately basically as I started eating normally as I no longer felt nauseous The spleen went back to normal within a few months.

[caroline_284 in reply to Yanico]

Thankyou.i think my anxiety is making mine take longer.