Scratching the itch - update

[quanglewangle]

First - THANK YOU all for your input on this

Fortunately my itching is not as bad as some of you reported. - PHEW! but nonetheless very aggravating.....

I talked to my Haematologist and he declined to recommend an increase in my Fexofenadine dosage or an alternative and referred me back to my GP whose pharmacist insisted I could ony switch from 2 x 120mg to 1x180mg Fexofenadine per day. - FAIL

He stated for the second time (as he did years ago) that all of my (believed to be Hydroxy) side effects could be the ET itself. - FAIL

He set up an appointment to clear me for a switch to Ruxolitinib (loads of paperwork full of side effects) but would I simply be swapping one set of side effects for another ? Or as he posits still have the side effects anyway. And I have a face-to-face appointment scheduled (shock!!)

Anyway I am now using Beta Alanine that seems to be working - fingers crossed !!!!

[ainslie]

I read you say Ruxolitinib, full of side effects. Not sure what you mean by that but most on Rux tend not to have sides, I’ve been on it 7 years for PV

[DougyW]

Have you tried normal antihistamines? I get itching and it's managed by Certizine

[quanglewangle in reply to DougyW]

As l listed in my first post l started on cetirizine but it became less effective in time.

[hunter5582]

Pruritus is a pretty common MPN symptom, including for people with ET. HU can cause skin atrophy, scaling, rashes, ulcers and other skin issues including itching would be possible. At this point it may be impossible to sort out what is the cause. Stopping HU would likely be the only way to know.

Given what you report, a switch to Jakafi would be worth trying. It is very effective for treating the pruritis. All the treatment options we have come with potential side effects. The only way yo know is to try.

I was unable to tolerate HU and did much better on the interferons (Pegasys/Besremi). The iFNs have been more effective and much easier to tolerate. Note that itching is one of the Besremi side effects I experience. It is well controlled by cetirizine.

Perhaps you will find that the Beta Alanine works. Others have reported success. Hopefully it will be so.

[S031251]

Hi I do sympathise I’ve had PV for over 10 years started with HU. An increase in fenofexadine made no difference nothing did until Rux. Ok I have put a bit of weight on but worth it I call it my wonder drug been on it for over six years and haven’t looked back. Good luck

[Kathryn2]

Probably not the answer for severe itching, but for what it's worth: my experience of PV on Pegasys is itching/ prickling after a shower, and it continues a bit on my scalp causing itchiness and pink skin. My hair is thinning as well. So after washing my hair I bend forward and (using the hand held part of the shower) run cold water over my scalp until it feels really cold. Seems to calm it down and it hasn't been itching so much. Still thinning though. Hope this helps someone.

[Ducatirider]

I had psoriasis prior to ET so that didn’t help things. After initially starting peg interferon I had UVB treatment for a few months and also used cetirizine. The pruritus has improved with time. When things were extreme I used ondansatron- zofran wafers. It is sometimes use for chemotherapy related pruritus.

[Hopetohelp]

they don’t normally offer Rux to people with ET, PV yes, so if they have I would try it and apparently it helps the itching

[Flylikeabird]

Rux totally eliminated the itching!!

[Pogm]

Rux is a life saver, at least for me. I currently take Besremi and Jakafi ( small dose) I tried many other anti- itch remedies and only Rux helped. I have had no side effects except the weight gain. May be the right path for you? Give it a chance! Best of luck!

[sinb]

I have been taking beta alanine when itching begins and before it spreads out. It has been successful in calming and quelling the degree and time of effects. As a result of this success for me, I have not taken an anti-histamine for the 5 months since beginning it. It has made my muscles grow stronger and even larger. Although whatever triggers the start of the pruritis remains in the obscure. Keep on the trial. I am thankful for those on this site who made the recommendation as it has made such a difference for me.

[Sewingtime]

I have been on Ruxolitinib for 3 1/2 years for PV, had terrible itching before that on HU. Itching vanished overnight with Ruxolitinib. Good luck!

[Sewingtime in reply to Sewingtime]

Also no side effects on Ruxolitinib.