Ruxolitinib is intolerant, what should I do

[merlisa]

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.

Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when I was diagnosed and used interferon.

I noticed that I began to have an intolerant reaction to Ruxolitinib when I was taking it for about 3 years. In the next 2 years, my attending physician would do everything possible and use drugs that may benefit me to overcome this problem. Found that only glucocorticoids can help elevate platelets. Now I take 15mg glucocorticoids per day, but the platelet value is still very hard.

I know the best way to solve this issue is to change the target medication. But there is only Ruxo on the markets in the China mainland....

Worried for me! Hope you can help me! 😭

[Leighcox85]

hiya sweetie iam in your position now and rux no longer works the other drugs iam not tolerating and for me stem cell transplant is my last option have you got anymore treatments you could try like fedratinib or is sct a possibility for you

[hunter5582]

Hopefully you will find pacritinib available in China before too long. It is the JAK inhibitor shown to be better for MF + thrombocytopenia.

Wishing you all the best.

[Bullace]

So sorry to hear this. I was on rux for about 10 years before it stopped working for me. I'm now on fedratinib which isn't working very well and have run out of options as well. Not quite sure what will happen next, but I hope that new drugs are approved soon for us both! All good wishes to you.

[Buggerbear]

Hello Merlisa. I am still taking rux and will continue until it stops working. I am not sure what my Dr. will try at this point, but I am sure it will be some type of JAK inhibitor.

Hope you have found some new medicine and it is working well. Wishing you the best!!

[Charferqueen in reply to Buggerbear]

Thanks for your information. Actually, I am still taking Rux although my platelet is so hard. This medicine is directly related to platelets count, but it does not mean that medication is taken solely based on platelet count. I believe in the medication plan of my attending physician. In addition to Rux, I also use interferon at the same time. Although the platelets count is very low and there are currently no other targeted drugs available in China, I am not so worried about this issue. I am worrying about the ASXL1. This gene mutation will cause the disease to eventually turn leukemia and I will be faced the transplantation.