Day's Three & Four on Inrebic

Side effects? What side effects?

I haven't been able to answer the question, "Are you experiencing side effects?" because I haven't been sure what all the side effects might be. The paper that came with the meds was very generic - not specifically about Inrebic at all. Dr. Gerds told me that diarrhea was common - but yesterday I wasn't having diarrhea.

I did have a cough and chest congestion. But my son's family and other families in the church had the same thing last week. Seems likely this is a gift from them.

I also had a lot of arthritis pain. But I've been working on getting a bathroom exhaust fan installed in our master bath. Some people probably handle this better than I - but for me it involved multiple (5? 10?) trips into the attic crawl space and some very cramped working conditions. No wonder I'm sore.

But today - day four - I believe I have begun experiencing a true side effect of Inrebic. Sure enough, the diarrhea has arrived! (Got that bathroom exhaust fan installed just in time!)

It could be worse - the cramping is not too terrible. I have made frequent trips to the bathroom, but I haven't exactly spent all day in there. So far I have not even taken Immodium. (Maybe I will do that before bedtime tonight?)

While I could stand to not have diarrhea and I hope it goes away fairly soon, having the one true side effect that I know about is kind of reassuring. The medicine is working in my body like it has in most people for whom it also worked to decrease the symptoms from myelofibrosis.

Second Day on Inrebic

As the Jakafi was losing its effectiveness I was having more constitutional symptoms. The worst of it was the pruritus - intense, painful itching - as if you were being eaten by fire ants.

When I stopped taking Jakafi so that I could go on Inrebic, I found out that Jakafi had been working better than I had thought. I suddenly had some terrible attacks that lasted for hours. It was terrifying.
The worst of it was that I didn't know how long Inrebic would take to start working. I figured I might have weeks of these attacks and it was NOT a happy thought.

Well, I do not know for sure that the Inrebic is the cause, but I did not have any serious attacks of pruritus today.  I spent much of the day doing some really dirty and sweaty work that would normally be an invitation for pruritus, but I only had a slight case that lasted about 15 minutes.

I even took a shower after I got all that work done. That is a recipe for a puritus disaster. After you get out of the shower and start to dry - that is when it frequently hits. But not this time. No pruritus!

I say praise the Lord! Evidently the Inrebic is working right off the bat - and that is a very hopeful sign. May it work on into the distant future and get my numbers into even better shape.

First Day on Inrebic

Since my spleen was very large and I was having some constitutional symptoms like pruritus after showers and some night sweats, I thought Jakafi was not doing much for me. So I didn't expect much of a change when I went off the Jakafi.

Well, I'm here to tell you that my pruritus went wild after only twelve hours without the Jakafi. When I got up from bed and got dressed it started and it was intense. Now we are a few hours down the road and it is not so intense, but it is still stinging me - particularly on my legs.

I took my first dose of 400 mg. of Inrebic at about 6:00 am. This medication has just been approved about a month. The capsules are orange/brown with no markings. They don't have 400 mg. capsules, so you have to take four 100 mg. capsules.

Someone told me not to expect much beneficial action from the med for a few weeks, but I'm sincerely (very sincerely) hoping that it has an early effect on my pruritus. Yowza!

I followed the advice of the pharmacist to take the med with fatty foods. (A benefit already!) So I had bacon and eggs and a buttered English muffin.

A minute after I took the capsules I started to have a bitter taste at the back of my mouth. Eating helped, but now - more than an hour later - I am still having a diminished but noticeable bitter taste.

We will see what the side effects are. They said diarrhea - but my bowels are already messed up because of the package of fig newtons I ate yesterday!  We will see.

Time For Something New

I haven't written for a long time now. That is partly because my myelofibrosis has been chronic and not really in the forefront of my mind. About once a year I would be concerned about my blood counts.

Last January Dr. Gerds was concerned as well because my WBC was up in the high sixties and my spleen was growing again. He had a bone marrow biopsy done along with extra blood work. But it came back negative. Pretty much the same old thing. No sign of AML starting to develop! (Praise the Lord!) We talked about trying one of several trials that he was doing, but it seemed to me that I was borrowing trouble - more blood draws, daily record keeping, more BMBs, and side effects from the drugs - without any idea if it would help my situation. I decided to wait.

Since then my wife and I have been buying a new house in a new town, preparing our old house for sale and our new house to live in. I have been working on plumbing, electric, and carpentry. And I'm not done yet. It has been a tremendously busy time. It has been an extreme challenge. And in the midst of moving my spleen has been marching on.

Dr. Trehan told me it was very big again. Dr. Gerds measured it at 18 cm and noted that it was past the midline of my body. (It hasn't affected my eating... I eat too much no matter what.) My WBC has been up to 75 and over twice, but mostly ranges from the upper 50's into the upper 60's. I was concerned two months ago when my HGB was down to 10.8 and my platelets were at 102. But they sprang back the following month.

Constitutional symptoms have increased too. I have occasional night sweats,  and frequent pruritus. My fatigue is worse again too.

So, Dr. Gerds and I have decided on a change. Inrebic (Fedratinib) was approved by the FDA in mid-August. I will start taking it this coming Tuesday, Sept. 24.

Tune in here to read about my experiences with this new medication!