Two Besremi doses and the itching begins!!

[Miriammusic]

So I am off the Bomedemstadt clinical trial and just began Besremi on 10/9. I am on 50 mcg, which I have had twice thus far. My numbers didn't budge much at all although my hematocrit was not too bad. The doctor wants to double to dose to 100 mcg which I am scheduled for this Sunday. Since being on Besremi though I have had the dreaded pins and needles/stinging/itching that so many on this board suffer from. My question is, is it my horrible numbers or the Besremi that is causing this? And what to do?😩

Miriam

[Barbiebreath]

I have been on Besremi, 100mcgs, for about 6 months now. I don’t get the pin and needles. (Just for your info.)

Welcome to the club! I hope it works well for you.

[Miriammusic in reply to Barbiebreath]

Thanks so much!

[EPguy]

I had zero itch/needles on HU and before, but after starting Bes I get a light case after shower (Aquagenic pruritus). For me it's not bad enough to be a problem but did relate to Bes. Strangely no issue after a hot bath.

My blood counts are ok, so it's possible as yours normalize it could get better. But it is in the effects list for Bes:

"The most common adverse reactions reported in > 40% of patients were influenza-like illness, arthralgia, fatigue, pruritus, nasopharyngitis, and musculoskeletal pain"

accessdata.fda.gov/drugsatf...

It likely relates to the tumult that IFN causes by design in our system and I believe is one sign it's working as my Dr said.

Some members have had good relief with beta alanine, but it doesn't work for everyone as member Barbiebreath noted in an old post.

[Miriammusic]

Thank you so much. What is beta alanine?

[EPguy in reply to Miriammusic]

It's a supplement you can buy retail.

"Beta-alanine is a non-essential amino acid that is produced naturally in the body."

and "Some people have reported tingling of the skin after taking large doses of beta-alanine." This is opposite of what we want, but mere "tingling" is not the horrible itch we can suffer. Several members have had great results with it. But as with supplements: "Talk to your doctor before you take beta-alanine"

webmd.com/vitamins-and-supp...

[hunter5582]

It is hard to tell since the itching can come from to MPN or the Besremi. Sometimes timing is the only clue.

I did get itching and rashes due to Besremi

A daily Claritin handles this adverse effect nicely. The itch also seems to be fading after months on Besremi

[Miriammusic]

Thanks Hunter. Yeah, I didn’t have any itching on the Peg. 🙄

[hunter5582 in reply to Miriammusic]

I had itching and rashes with both. Not with the PV in KY case. I am glad the Claritin works.

[ainslie]

I know for a minority Peg can make itch worse, allegedly Bes is only one molecule different to Peg so fair chance it’s the Bes, some on Peg found they itched on 45mcg but when increased to 90 it went away, hopefully yours will go away. In the meantime worth trying beta alanine or UVB phototherapy etc