Experiences with

Ruxolitinib

Husband was started on Pegasys after being on Ruxolitinib since 2017.. He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer.

Patients receiving pelabresib in combination with ruxolitinib reported fewer anemia adverse events compared with placebo plus ruxolitinib, and fewer patients in the combination arm required red blood cell transfusions.

I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now.

[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking Hyroxycarbonide but not Ruxolitinib and not that it had the side effect of shingles.

- Janus kinase inhibitors, e.g. ruxolitinib, can be used to manage symptoms when steroids are reduced. - In male patients with Sweet's syndrome where there is lung involvement, and where their condition keeps flaring up when steroids are reduced, VEXAS should be considered.

Hi Has anyone been on Ruxolitinib for PV for the last couple of years ,and could share the effects regarding taking Ruxolitinib? I have been advised to consider this ,as I had to stop taking Peg INF , Many thanks , Bobbie

I would like other treatment options such as Interferon & Ruxolitinib to be addressed, and I would be grateful for any advice on how best to approach this. I am also considering asking if he can be referred to an MPN specialist. Thank you for any advice.

It show high rate of remission. https://mpnadvocacy.com/high-rates-polycythemia-vera-remission-seen-ruxolitinib-plus-peg-ifn/ Cheers

Hi there I have been on Ruxolitinib for just over 4 years for MF, today I was told that I am becoming very anaemic and was recomended to change my medication to Momelotinib (Omjjara) has anyone any experience of making this change (good or bad)

Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting

I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin.

I’m taking 15 mg ruxolitinib twice a day, and since weekly injections of EPO were added, my haemoglobin levels have pretty well normalised. Definitely feel more energetic. I really enjoyed meeting other people with MPNs at the Edinburgh forum recently.

I was wondering if anyone else was taking Alendronic acid whilst on Ruxolitinib? Many thanks, All the very best, Bobbie

Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?

I wonder if Ruxolitinib prevents soft tissue healing? Anyone able to comment?

Ruxolitinib is already approved, in similar cases, for the treatment of PV patients in Scotland and Northern Ireland and we hope that the NICE recommendation will also be adopted in Wales in due course.

I am reaching out to the MPN community for their experiences on being on Ruxolitinib.

Striking comments about the efficacy of some treatments such as Alpha Lipoic Acid and Beta-alanine sound interesting as do a number of responses citing Ruxolitinib (Jakafi). However the latter has its own long list of possible side effects.

I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet count.

If I do end up having to take another drug alongside the ruxolitinib, what is it likely to be? Carol.