Promacta - anyone else here get creepy-crawlies?

After 7 years of various steroids and immune-suppressants, I gave in to my Hematologist and started on Promacta this past January. It took a few weeks of 75mg/day to kick up from 4k to 11k-16k, then finally last week the count made it up to 32k.
For me, 32k is great!
Anyway, from day 1 of Promacta treatment I have had the creepy-crawlies. Just an odd skin-crawling feeling that will not go away. Like hundreds of tiny spiders are dancing on your skin...sort of a "Spider River Dance" as it were.
The other side-effects aren't too bad (tired, spacey, screwed-up stomach, and lack of appetite), but the creepy-crawlies are....well....interesting.

I must admit that creepy-crawlies are better than the hallucinations of massive Prednisone doses (although that was fun at times, like the morning I watched a mountain lion walk into my boss's office....uh huh). And Promacta is far better than 40mg of Dextramethasone twice a day...I HATE that stuff! But it is very handy for a quick count boost over a 5-day period when needed.
And so far, Promacta seems less invasive than Cyclosporine or Cellcept, both of which stopped working entirely for me after a 2-3 years each.
.

I did 50mg a day for several months with absolutely no side effects. Platelets slowly dropped and we boosted my intake to 75 mg a day. Now I am dealing with fatigue and general malaise, but no 'creepy cralies'. Sorry your having such a weird reaction! So strange.

I'm finally getting my spleen out next week. Tried all the meds except Rituxan and Promacta was definitely my favorite...just wished it kept my platelets higher.

Hang in there and keep us posted. Best of luck and high platelets to you!

Fran

I had that and found out my ferritin was low....that was the cause. It took two years of not sleeping before I discovered what was going on. That may not be your problem, it's just a suggestion.

Sandi...You've been on Promacta for 2 years?

I suppose I should have mentioned that creepy-crawlies' is one of the side-effects mentioned by the manufacturer...just wondered if anyone else had them. Not a big deal really, just interesting.

FWIW: I gave up on "high counts" several years ago. Since I have never had a count over 90k, a "high count" for me is 50k. And any count over 20k is cause for celebration! Oh sure, years ago when I was first diagnosed, I would freak when the count dropped under 10k....but you get used to things.

Oh no - I'm not on Promacta. I just mentioned the cause of my skin crawling. If it's a known side effect of Promacta, that's probably your cause.

I am on Promacta 50 mgs. I have had the creepy crawlies too. I did notice on the package insert that this is a side effect. It is not an every day thing for me. Very minor compared to some of the other stuff I have been on.
Vickie