treatment refusal ruxolitinib: HI, my partner was... - MPN Voice

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treatment refusal ruxolitinib


HI, my partner was diagnosed with primary mf at the beginning of January. He was categorised as low risk. His first scan in February showed a spleen size of 23 cm. He has recently been suffering from significant localised spleen pain and acute referred pain on the point of his shoulder. He has had another scan and his spleen is now 28cm. He has been told that he can't have ruxolitinib because he doesn't meet the prescribing criteria because he is low risk. The request for the drug will have to go to an individual patient funding request panel. We live in Wales, which Im now beginning to wish we didn't and only 51% of all IPFR medication funding requests were approved last year. He hasn't been offered any pain relief apart from the cocodomol that his already taking at max dose and which isn't working at all.

I would welcome and thoughts, suggestions or comments and apologise for the long post.

19 Replies

I cannot believe he's considered low risk with a spleen that size and still growing he must be so very uncomfortable. Has he been seen at CUH where I believe they have a very good haem??? In Ireland once diagnosed with MF rux is prescribed. I've had MF for 8 years and been on rux 4 1/2 years with another drug I was lucky enough to be accepted for a clinical trial. I so hope he gets this drug asap keep at them don't let up appeal as much as poss. Hopefully once they receive the request they will approve it immediately. How old is your partner? Has he looked at any trials?? Good luck.


liarose in reply to eire

What other drug are you on with Rux please

eire in reply to liarose

Hi Liarose. The other drug is panobinistat which I take every other week for 3 days. My haem feels this drug is no longer working as my spleen is getting bigger and is contacting Novartis to get me taken off this trial. Lots of people on this site have had a good spleen reduction on Rux but for some reason I'm not one of them. I'm going to be given an injection 7 days of the month but cannot remember the name of the drug!!!!! I'm just so hoping this will work as I've been ruled out for a stem cell transplant. Is your partner able to eat a full size meal as often with an enlarged spleen it's difficult to eat as much as you should. There is a very interesting new drug Promedior or PRM-151 which is given intravenously Claire Harrison was conducting this trial in Guys in London. Unfortunately I was unsuitable for this trial. Lots of us have MF and all react differently it's a strange old illness!!! Lots of questions being thrown at you on this forum I just so hope the next time your partner sees his haem he's better armed. Fingers crossed for you both I so hope he gets the treatment he deserves. We're all here to answer any questions we can for you. Good luck.


Twinkly in reply to liarose

Most of us have to take a blood thinning as well every day .asprin or clopiterol me ..can't tolerate asprin ....

Yes, I agree with eire; do keep after them and don't give up. I would try contacting Maz at mpnvoice she may be able to give you some useful advice about how to proceed. Alternatively, Maz may be able to contact Proff Claire Harrison or one of the experts on her team, on your behalf, for advice. It can't hurt to ask. Please don't give up.

Hi, also live in Wales, got ruxo as high risk.

Ruxo has been great for me, shrunk enormous spleen, less fatigue etc

So I would say you need to try and get Ruxo

Costs £42k pa for full dose, though I am on under half dose so going private possible option but expensive.

There is a list of how categorisation for low/high risk occurs, will try and find it or u can look for it on web. Then u could challenge assessment? Or formally write and ask on what basis they have categorised?

But at least low risk has better prognosis!

Hi this is twinkly here ..been away some time recovering from my complete knee replacement surgery ..but I'm pleased to report all better now !

Now to this enquiry ! Why not ask to go on a drug trial ? You will need to volunteer ..then ask if it could be ruxulitnib ,,that's how I was given the drug almost 4 years ago .mind you I was having to be venesection very often and the drug I was taking hydro was not working and my blood cells were very irrational ... I decided to read as much as possible about alternative eating as well .gave up tins and packets .all processed food ,made my own healthy soup for a week to detox my unhealthy body .drank only filtered water .then I slowly added green food ..I'm extremely well now spleen is tiny and healthy again ..why not try it ..give up pork and red meat and feel the difference right away as ever from twinkly ..xxxxxxxxx

Surreygirl74 in reply to Twinkly

Interesting what you say about giving up pork and red meat and feel the difference right away Twinky.. giving up all animal products have seen people make miracle life changes to their bodies. I went Vegan in 2015, wish I had done it earlier. Also pork is scary as is dairy for our bodies and immunity and don't even get me started on red meat and cancers... I now drink only distilled water, noticing a difference in my fatigue and recovery after running! Our health is our wealth <3 Glad the knee replacement went well. Big love xxx

eire in reply to Twinkly

Great to see you back Twinkly. How did you get on in crufts this year with your beautiful dogs??? Delighted you're doing so well.

Twinkly in reply to eire

I went to Crufts in March ,timed the surgery so I would be mended .my mate Doug a retired policeman did my running for me ,we took new puppy Vanya ,,she won best puppy .georgia was 4 th behind 3 international champions ..I was extremely proud of the girls ,they were so confident in the crowds ..I walked without a cane .most important for me to get fit ,did my exercises every day ...

Maybe ask for a referral to see Claire Harrison. I was referred from Scotland and that is how I eventually got Ruxolitinib. Worth a try. Best wishes Jan

I have a spleen size of 23cm and pain similar to your husbands, I also have some liver issues. I am on Hydroxycarbamide, have been for 3 years. I am a high risk PV patient with significant changes to suggest I am becoming more MF. I have gotten approval for Rux through compassionate grounds. My hospital put in a case for me and won. I was put in twice and we started the application process about 12 months ago. I now have that approval as mentioned. I do wish you all the luck and hope he gets the medication soon!!

Hi afonog... :)

Firstly, I sympathise greatly with you and your husband's plight.

Although, I am located down in Oz, I also first tried to join a trial before I was re-diagnosed as MF from ET. My spleen is tiny now 11.7cm last ultrasound, and I generally have better energy for exercising, and a whole new dietary regime (pescatarian & ketogenic).

Has your husband undertaken a Bone Marrow Biopsy (BMB) as yet, and if so what were those results?

On a scale of 0-3, I was grade 2 and considered intermediate levels of scarring, and that altered my diagnosis from ET to MF. I then had little trouble gaining the Jakafi.

I did not respond well at all to HU and Interferon, so for me this was quite a welcome development...

I also recall when I too was suffering from left shoulder pains in my back, that it was most unpleasant.

The fact that you are in the UK, in this instance, should actually work in your favour. Some of the replies you have received above have suggested gaining a referral to see Dr Harrison, in your case, I think that this might be the best approach, however, I would also l ask your current medical team about what Clinical Trials they know of that involve Ruxolitinib, are currently available, and try to put your hubby's name down for that...

Best wishes, and I do hope that you get it sorted sooner rather than later...



Twinkly in reply to socrates_8

Great to keep in touch across the miles ..all the best ,, twinkly .x

socrates_8 in reply to Twinkly

Hey Twinkly... :)

Same to you... Stay happy & well...

Best wishes


Often you need blood thinning also every day ,some take a sprin !

I take clopiterol I can't tolerate asprin ...

Thank you for all the replies. We will be going to see a specialist inCardiff who works with Claire Harrison. We can't go to London because there is no cross over care arrangement between Wales and England.

I'm not happy with level or depth of care so far so will probably not be entirely popular with the local care team.

Lyn44rms in reply to afonog

I do hope that all goes well and that your husband gets the help that he needs. Well done for getting this referral ..... sometimes its the only way to move things forward. So don't worry about putting people's noses out of joint. They may learn something useful out of all this too.

Good luck with everything..

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