Has Promacta relieved ITP associate fatique?

One of the symptoms of my ITP is a bit of fatique. Others complain of this as well. In considering trying Promacta, I am curious if anyone who has had success with it can comment on whether it relieved their fatigue.

The reason I am wondering, is I have read that the fatique may be due to your immune system working overtime. Promacta works by increasing the generation of platelets, but your immune system is still working hard to get rid of them. I therefore wonder if the fatigue might persist even if the Promacta brings the platelet count up.

Can anyone comment if Promacta reduced their ITP related fatique as well as improving their count?

Thanks.

Bill

I took Promacta for 3 years and had no decrease of fatigue.
(note: I had to stop taking Promacta due to insurance constraints, not because it wasn't effective).
My 'theory' on the fatigue is: Promacta increases platelet production, requiring extra energy to create this surplus of platelets. In essence; your body is working overtime to produce a more than normal amount of platelets, then it is working overtime to destroy most of those platelets, and then there are side effects of the drug itself (one of which can be fatigue).
There is no such thing as a free lunch. It's exhausting just to contemplate.

.

I've never been on Promacta, just Decadron and IVIG over the years; but, I will have to say that my fatigue is always there. Sometimes after doing something real strenuous, I can sleep for 12 hours! It's not every day, but when I feel it coming, I feel like I can't push myself. Before having ITP, I was a bundle of energy--could run 6 days a week and never needed hardly any sleep!

I had the same question as you Bill, as to whether it was the low number per se that caused the fatigue or the constant killing off and making new platelets that caused it. Trouble I found with Nplate which is similar to Promacta, is that it's only designed to get a count of 50 and that is not high enough to get rid of the fatigue for me. So I still haven't really found the answer.

It's good to know I'm not the only one who is always fatigued. When my counts are very low, my throat hurts and my bf and family say i'm very cranky. My current doctor ( I will be going to Ohio state in June to one of the best) doesn't think anything of it. None of my treatments ( Nplate, IVGs, and Rituxin ) have really made me less tired.

I only notice ITP related fatigue when I'm under 30K. If I'm above that it's typically time to check out the other autoimmune conditions. Typically it's time to adjust my thyroid meds. Can't say that I've noticed any correlation at all with taking Promacta.

My thyroid is on the low end, but not low enough to take any meds. I grew up having an underactive thyroid; from age 16 to 35. Gradually my doctor got me off of thyroid medication due to my insomnia. But all during these years I still had lots of energy and hardly ever slept! Not the case any more!

DeeDee, so you're not taking any thyroid medication at all? I was told I would be on it for the rest of my life. I suggested to my doctor it was time to have it tested, so I'll do that at my next CBC in April. I'm under, too.

Vdeutsch85; "I will be going to Ohio state in June to one of the best"

I'm curious which doctor you will be seeing at OSU/James?
I've been going to The James for about 10 years now.
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Cindy,
I too, had heard that once you are on thyroid, it is a life-time thing. Additionally, all the women on my Mother's side of the family also had underactive thyroids. The doctor I had in my thirty's wanted to get me off the thyroid meds because I had the insomnia and anxiety. First, he stopped one pill for a year; then he took me off completely one year later. Since then, I do test on the low side, but am never at the point where I need any meds. I am glad that I was able to stop the meds as every time I have my mammogram, they want to know if I take thyroid meds.

Dee De

Hmm, food for thought. Thanks, DeeDee. I have to book my mammogram and can't remember if they've ever asked me that. Will wait til I get my thyroid tested on Apr. 12.

The only treatment I have had that has lessened my fatigue is cyclosporine.

Over the past year, my platelets have trended down from ~100K to ~40K and I thought I was experiencing "ITP fatigue". Every day around mid afternoon it would come on. It felt good to lie down and close my eyes, but I never napped. After several months I realized it was just that my eyes were getting dry, and that in my mind I associated that feeling with being tired.

So, I've decided it probably has nothing to do with my platelet level; it's more likely related to life changes and/or med changes over this past year that have caused my eyes to get dry in the afternoon.

I have decided to go to dr mccrae in Cleveland. He is an amazing itp expert. He was able to get me seen in April.

He is trying me on cyclosporine and Nplate and my levels have been great the past 5 months