Secondry Myelofibrosis

JIM HAS NOW BEEN ON RUXOLITINIB FOR 8 WEEKS AND FEELING AND LOOKING MUCH BETTER THAN BEFORE HE STARTED THE MEDICATION. PROBLEM IS HIS ANEMIA IS A PROBLEM, ONLY 7.7 AND TRANSUFISIONS ONCE A WEEK AND HIS PLATLET LEVEL IS WAY UP AT 1200. AFTER THE FIRST 4 WEEKS FELT SO MUCH BETTER, NOW NOT FEELING AS GOOD AS HE WAS. GOING TO THE SPECIALIST ON THURSDAY, MAYBE HIS DOSAGE NEEDS ADJUSTING. ANYONE ELSE HAD THIS PROBLEM? PLEASE SHARE IF YOU HAVE. HE IS TAKING 2OMGS, TWICE A DAY.

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What was his levels before starting? Jim may want to try 15mg twice a day and see if his counts bounce back.

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It would appear that you two have found each other on both active discussions on this medication:

https:/­/­rxchat.com/­Discuss/­Ruxolitinib-226382.htm

This is a very new treatment, so the available information is limited:

https:/­/­rxchat.com/­wiki/­Ruxolitinib/­


Carol, how is your husband doing on it?

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Hello, I ran across your post from 2012 and was hoping you might provide me an update to how your husband is doing and if he remained on Ruxolitinib?

I started taking Ruxolutinib in low oral dosage in January 2015 as part of a study to help leukemia fatigue and, in my case, body/joint/muscle pain. Within 30 days my pain level was 90% better and within 60 days my fatigue level greatly decreased.

After increasing the amount I was taking, I reached my maximum amount toward the end of March 2015. Since March I have been on 15 mg twice a day for a total of 30mg per day.

All was well until about one month ago when I awoke with a tremendous headache and severe facial pain. Actually, prior to that I wasn't feeling "right" but could not put my finger on why or what was wrong.

I ended up with high fever and was subsequently hospitalized for 2 weeks. During the time in the hospital, they took all kinds of diagnostics, fed me with a variety of antibiotics and, eventually, steroids. The headaches went away after taking the steroids were given but, as I have been tapering off, they are beginning to return.

Interesting to me is at a time I was running a fever of 103.8 F, my WBC was 6.1! My RBC and hemoglobin counts have started to gradually fall since taking the drug but not so low as to warrant a transfusion. Since I was diagnosed with Autoimmune hemolytic anemia (AIHA) at the onset of my leukemia in 2008, I have been evaluated to see if it is repeating itself and it is not. Therefore, there must be another reason for the counts to be falling, albeit slowly for now. My platelets, on the other hand, are going up so I am now on a "baby" aspirin each day. I have chronic sinus problems but NEVER, especially this time of the year, have I had these kinds of headaches where my entire head, teeth, jaws, etc hurt. I have been to the dentist, been checked for TMJ, etc and am so afraid that it is the Ruxolutinib. Now I must decide if I want to go back on the trial. I was taken off about two weeks ago "just in case" the headaches were from the Ruxolutinib.

I gather that simply getting off the drug does not make the problem go away immediately and was wondering, what other experiences your husband has/had? Is he still on the drug or did he stop. If he stopped, did he revert back to his cancer "norm"?

What bothers me is this situation came out of the nowhere. Although I have sinus problems I cannot remember ever having an infection in the summer and I usually have a build up or warning and certainly have NEVER had the kind of headaches I suffered for nearly a month.

Thanks so much for any information you are willing to provide.

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