Help!

[Otis23]

Hello everyone. I'm 46 with ET been on peg for 15 weeks now (90 mg weekly) numbers show very small decline. Is that usual? Also I've started itching- insanely itching after I shower. Not product related and it's an itch like no other. Anyone else had this- any top tips?

[RoundTheWorld]

Hi Otis. Others have longer experience than me . I started Pegasys (for Pv) in a similar timeframe to you. Had a v slight improvement, then it went the wrong way (slightly) so have had my first venesection. My last blood tests (a week before that) were showing a move back into the right direction so that one month may have been a blip. (I’ve been on a lower dose than you but likely to move up to 90mcg this week).

From what others have said on here the interferons can take weeks/months to really get going but then often make a big difference (and in some patients cause a molecular as well as haematological remission; the significance of that is currently being researched but logically seems like a good thing).

I don’t know about ET but the itching after bathing is a hallmark of Polycythaemia Vera - it affected me badly a few years ago (I’m so sympathetic; know it can be very difficult). If you search previous posts (search tool is to the right of the page on the ‘Posts’ view) there has been lots of advice (some people have had success with beta alanine; I’ve never used it so can’t comment). I don’t know exactly why my itching is now more manageable but I stick to a few washing products that are mild and work for me (in my case Surcare washing liquid for clothes, Child’s Farm for my skin and I dress in mainly natural fibres. Dry and dress quickly after bathing (patting better than rubbing) and I use hydromol ointment on my arms. When things were really bad I used to apply ice packs to my skin (through a thin layer of material to avoid cold ‘burns’) - this calmed things. Try not to scratch but gently rub or hold the skin and it eventually calms down. Good luck.

[Pachena in reply to RoundTheWorld]

Gee whizz 😆 I have ET J2+ and after a shower the itching can be intense tho fairly short lived and I wondered what was causing it… had no idea that was the itch that people with PV complained of. Anyway it’s probably nothing but I’ll keep a check on it and tell my Heamatologist next time I see her. I’m now on a low dose of Pegasys which is working very well for me. I don’t expect there to be any problems 🤞🏻

[RoundTheWorld in reply to Pachena]

I don't know that it's exclusive to PV - just that it's a very typical symptom of that and the haematologist immediately picked up on that in my history when I was first diagnosed. Its the link to bathing/water that makes it stand out from other types of (non MPN related) itch I think.

I don't know what causes it (or really why mine is so much better than before; perhaps the changes I made but perhaps just coincidence or maybe transdermal HRT has helped - no scientific basis for that theory at all though!). I'm always nervous going into the winter as it can flare up a bit more then but it is SO much better than years ago and I am hugely grateful for that.

[Pachena in reply to RoundTheWorld]

Thank you, Round The World. It’s all an education and journey, possibly different for each one of us.

Thanks for your reply 🌸

[Hopetohelp]

Yes peg can take a long time to kick in. For some it is quick and for some like me it held figures steady but was well over a year before they came down. I had been storing my peg in the bottom draw of the fridge out of the way and when I bought thermometers for the fridge I realised it was at 0°. It is meant to be kept between two and 8° so I moved them up into the middle of the fridge where it’s exactly 5° and then my figures started to come down, just something to look out for. When I stopped the peg itching reduced quite a lot after a bath or shower so I think it can make it a bit worse. I found using bamboo towels and flannels that are very soft and dabbing my skin helped reduce the itching. You seem to be on a high dose to start. A lot of us start on about 45° and move to 65 it might be worth a quick chat to your haematologist, the best of luck and hope you get it sorted

[ainslie]

as others mentioned it can take time for Peg to have full effect on counts, often months or sometimes years , re the itch Peg can cause itch or make it worse for some but it can also get rid of itch for others.

I have read of some getting itch at 45mcg but after a period went away and others it went away on increasing the dose , so it’s very varied.

Some get good benefit from beta alanine , I used UVB phototherapy with great success and of course adding a little Ruxolitinib can get rid of the itch in many cases although not that many docs go for the combo treatment

[hunter5582]

As everyone else is indicated, Pegasys can take some time to be effective. It varies from person to person.

I never experienced the itching until I started on Pegasys. The itching I experienced was mild to moderate, sometimes with rashes, and not associated with taking a shower. What you are describing sounds like the aquagenic pruritus that is a common PV symptom. What works for me is a daily dose of cetirizine. this virtually eliminates the itching.

Given the Pegasys shortage, you may find yourself switching to Besremi (hopefully). You may or may not find any difference on Besremi. It was the same for me.

Wishing you relief and all the best.

[Otis23]

Thanks everyone, really appreciate the feedback.

[gilded]

Helli Otis23

I’ve been on Peg interferon for 2 and a half years. 90mcg fortnightly plus 75mg aspirin daily. Itching is not unusual and will abate and vanish in time. Interferon acts slowly so in due course you will see a reduction in platelets. That’s my experience for what it’s worth.

[Nerjalover]

yes Been there got the T shirt! I was diagnosed with ET at 40 ( I’m 67 now) . Took HYdra for 23 years and then it stopped reducing my platelets . At the end of this time I had dreadful itching especially after showers or baths- it was torture! I was then put on Peg interferon 90 weekly and again the itching was dreadful. I take a strong antihistamine every day and have menthol cream to rub on my skin after showers- it really helps! I got both from my oncologist.

[Fivecatsandcounting]

Hi Otis. It has taken me a year to see a reduction in my platelets on Interferon (they are still quite high though). My reds are still high and hct so I have had 5 venesections too in the past 6 months. That keeps me ticking over and I hope that in time the reds will reduce too and not be so stubborn so the the VS can stop :-). I'm on 135mcg weekly. It's slow but I feel protected on it 💪🥰. I hope you see movement over the coming weeks/months!

[Exeter21]

Took at least a year on Peg to get balance good on doseage . No major itching, hot night sweats occasionally made worse with caffeine so only one cup mornings now & on HRT patches which help sweats. Julia 👌