Experiences with

Ruxolitinib

.>> Negatives were <<older patients, those with myelofibrosis (MF) and those who had sudden discontinuation of ... ruxolitinib had worse outcomes.>> https://onlinelibrary.wiley.com/doi/10.1111/bjh.17402 -- For MPN patients an uncertain result in this report with possible reduction in t-cell response:

As I’v shared here before, ruxolitinib gave me nasty skin cancers. Monitoring and surgery plus radiotherapy deals with them. I’m also needing more frequent transfusions to maintain any kind of decent QoL.

In case it was made worse by ruxolitinib, I've paused that but the tingling has continued. I've had most of the other tests to make sure it is not due to vitamin B or iron deficiency etc I'm still awaiting some more results. I've seen a neurologist who thinks it might be paraneoplastic disease.

I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it has been getting more widespread. The gp has asked for a neurologist appointment but no idea when that will happen.

wee update on what's happening in my life with MF: really not much change still on Hydroxycarbamide my platelet levels are ok had a scan on my spleen that's ok but my symptoms of pain and fatigue mouth ulcers are just as bad as ever 🙃 spoke about changing medication but my haematologist says that ruxolitinib

The new Momelotinib is focused on MF with low iron (anemia) According to this report <<In MF patients, disease-related anemia can be exacerbated by treatment with ruxolitinib because of myelosuppression>> And MF patients already have or very likely will get anemia.

According to Prasad’s paper, these comments “may constitute subtle promotion of ruxolitinib.” https://www.vox.com/2017/5/18/15655520/pharma-marketing-disease-awareness-soap-operas-general-hospital

I have felt incredibly well on Ruxolitinib since starting it in 2020, apart from brushes with Shingles and Campylobacter. I've now had a two week tapering off and took my last tablets on Saturday.

Michele talks about her positive attitude towards her MF, and how Ruxolitinib greatly improved her symptom burden. She also shares some of her top tips, particularly having a buddy, she says that being able to talk to someone who understands what it feels like to live with MF really helps her.

and its inefficiency to eradicate JAK2-mutated clone in MPNs patients… curcumin affects both proliferation and survival of HEL cells, suggesting that its role in MPNs could be more effective in blocking neoplastic cells with respect to the common JAK2 inhibitors, such as ruxolitinib >> -- Prior mTORC

If you’re on Ruxolitinib stress that it’s an immunosuppressant (another key word). Falling ill on a Friday is not advisable. The system worked after a fashion but the two days of uncertainty shredded my nerves as I was so worried about what Covid would do to me.

Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone.

As Ruxolitinib is no longer working well, my haematologist has suggested combining either Danazol, Thalidomide or Prednisone with the Ruxo. Has.anyone any experience of this? What are the pros and cons? I am very worried about the side effects. Thankyou SkipperL

At present take Ruxolitinib but have to stop it immediately. Good and bad comments re Anagrelide would be appreciated. Many thanks.

Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg.

Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant.

Rux has a negative effect: <<Only three patients, one with CML on ponatinib, one with PV on ruxolitinib, and one with MPN-BP on ruxolitinib did not have measurable antibody response to vaccination.>> On the Voice there have been some members with PV and no Rux with less than 0.4 antibodies I recall.

.>> https://www.semanticscholar.org/paper/Resveratrol-selectively-induces-apoptosis-in-cells-Trung-Espinoza/9e71baa2823e624abbe4f95797118fb0ab4f6090 Their conclusion says << Moreover, resveratrol synergized with the selective JAK2 inhibitor ruxolitinib, eliminating tumor cells with the JAK2 mutation.

I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so taking Jakavi ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant.

Has anyone researched using Metformin and Ruxolitinib for Polycythemia Vera? Or spoken to a doctor about it?