Timing of side effects of Pegasys

[C2Cnext]

Hi folks

I am 60 female with PV Jak2 + and have been on Pegasys for a few months and under the care of a MPN specialist. My blood counts have been steadily improving (see attached).

I had itching prior to starting Pegasys but it seems to have gone CRAZY in the last week or so.

I always knocked any itching out with hot baths, beta alanine and cetirizine for the times when it got too annoying. I follow a high antioxidant diet so not contributing to the cytokine load by eating or drinking rubbish (as much as drinking myself silly right now is appealing).

My questions are related to timing of the side effects and suggestions are welcome based on experience. I have read that pegasys users can go along happily for months and then the side effects can kick in. I was on 90mcg per week for two months and a month ago they bumped it up to 135mg.

I inject on Wednesday mornings. Typically I would get hit by exhaustion the day after the injection (Thursday) and on Friday and Saturday I was itchier than normal (but it was still manageable). Sunday could be variable but Monday I was 'back to normal' itch wise.

I am interested in knowing if other people experience a similar cycle of side effects from Pegasys (or Besremi come to that) or if this is all in my imagination?

Have people experienced onset of worse side effects when the dose has been upped? Has anyone had to request a lower dose or experience of titrating backwards on pegasys?

I am keen to stay on Pegasys (Besremi is not yet approved in Canada) and welcome suggestions.

Cheers

Cheryl

[Mustang50]

Hi I always do mine not long before going to bed the on the whole sleep through side effects it sometimes wakes me up, but on the odd occasion when I’ve forgotten I’ve taken in the morning and the difference was awful, achey, sleepy, agitated feeling.

[hunter5582]

I have had success with cetirizine to control IFN-itching. Pegasys and Besremi were no different in this side effect for me. I am fortunate that the antihistamine works. I also get occasional mild rashes. That I ignore or treat with Eucrisa if they are more bothersome.

It sounds like you are already trying the things I would suggest. I am wondering if your PEG dose is simply higher than you can tolerate. It might be worth considering a lower dose with an occasional venesection to reduce HCT/HGB. That would be something to review with your MPN Specialist.

It may be worth a consult with a dermatologist. Perhaps something else is causing an uptick in the itching.

Hope you find relief ASAP.

[gilded]

Hello C2Cnext! I've been on 90mcg Peg per fortnight for about 15months. The itching was awful but of late, it seems my body has begun to tolerate it well and the itching has largely vanished. However, showering resurrects itching but rubbing in Centraben solves that.

[ainslie]

Pegasys and itching can be very random, it may be an idea to lower the dose back to 90 or somewhere in between to see if it settles. And venisect in the meantime if needed. Some people itch at 45 but not 90 and some don’t itch initially but it comes later, and of course for some itch is fixed with Peg, so very random. In my case when my itch went through the roof on Peg at 45mcg when I stopped it took 3 months for itch to settle to pre Peg. It’s pretty unpredictable. For itch I used UVB narrowband photography for 10 years it helped a lot , now I use Rux.

[KLCTJC]

Be careful with warm or hot baths. They feel great but will make you itch more. Cool short showers then lather up with cerave cream twice daily. They make an anti-itch formula too but the regular cream is great. Also, there is something cause dermaleve. It is for neuropathic itch. It is a little pricey but can work well. Just do gentle everything. Bar soap like dove. No essential oils. This may not totally rid you of the itch but in my practice no matter the reason for the itch it is part of my recommendations. One drug I prescribe all the time that I don’t see mentioned here a lot is gabapentin. Could be because people use it for neuropathy but I use it for patients that itch too. Not sure if it is right for you, but you can talk to your doctor if nothing else works. Hope this helps

[ritaandscooter1 in reply to KLCTJC]

We are all so different with what works. I'm not a huge itcher but the only thing that works for me is a very hot shower followed by lotion all over. A cool short shower would compound the itching. Interesting how we react differently. I also do so much better in warmer climate. Take care. Kerry

[KLCTJC in reply to ritaandscooter1]

that is not uncommon. Usually works well at the time of the itch. However, the itch will return shortly after the shower. Like 15-30mins. Hot water and water in general are really bad for your skin. If you notice this, try an ice pack. That will re-train the brain to register the cold instead of the itch. Maybe uncomfortable especially at first, but it works. But it is hard not to take a hot shower, I love them myself. But I do try to keep them short, under 15 mins. But I have never had an itching issue. Wish you the best of luck.