Pruritus and peginterferon: Does anyone feel their... - MPN Voice

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Pruritus and peginterferon

caroline_284 profile image
21 Replies

Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.

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caroline_284 profile image
caroline_284
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21 Replies
Ducatirider profile image
Ducatirider

Hi Caroline My pruritus was worse than the fatigue on peginterferon. I have had psoriasis for years that was under control. Since being diagnosed with ET and starting peginterferon it became a lot worse. My haematologist sent me to a dermatologist and with some creams, steroids etc and UVB treatment I have improved markedly.

I also have a nice tan in winter lockdown in Melbourne.

Cheers Adrian

caroline_284 profile image
caroline_284 in reply to Ducatirider

Thats interesting, I used to get psoriasis too.thank you.

havashan profile image
havashan in reply to Ducatirider

Hi Caroline, I have ET,JAK2 platelets 765. I have just started Peg injections 45 mcg (the first week two weeks apart, now weekly). I do have psoriasis and am concerned that Peg could acerbate it. Interferons are known to be problematic for people with immune diseases such as psoriasis. I am hoping that a small dose will not be a problem but I have noticed a few more outbreaks than before I started using Peg. I have had itching on my back for a long time and I thought it had become worse after starting Peg. My doctors don't think it is caused by Peg although they did not rule out that possibility. I have been advised me to take antihistamines to lesson the itching. They think that the itching will subside as Peg reduces my counts.

caroline_284 profile image
caroline_284 in reply to havashan

Thank you thats helpful too.

caroline_284 profile image
caroline_284 in reply to caroline_284

Also my haemotologist does not seem be too concerned with any link, just told me to take antihistamine as needed.also ceremide? cream and to keep skin well moisturised.

Hopetohelp profile image
Hopetohelp

Thanks for posting this. I too am interested in the answers.

suellj profile image
suellj

Hi Caroline, this is an interesting topic for me. I am in the process of hopefully changing from HU to Peg/Interferon, I am in my fifth week of injections at the lower dose of 45, combined with 7 HU tablets a week. I have itching almost everyday, sometimes it is reasonably mild but today it was pretty unbearable for 2 hours. It is the typical PV style itching, no rash, no other skin condition involved. The big change in my blood counts, presumably due to Peg is that my white cells have gone from 11.5 to 5.2 in the last 4 weeks I'm not sure whether that could cause itching. Overall the Peg seems to be working well in controlling my counts but the itching is proving to be quite challenging. Good luck and I hope Peg works for you.

Sue

caroline_284 profile image
caroline_284 in reply to suellj

Thank you. Yes it has brought my platelets down.

ciye profile image
ciye

I itch more on interferon, and water makes it worse.

caroline_284 profile image
caroline_284 in reply to ciye

Yes I find water triggers it.

charl17 profile image
charl17

When I switched from HU to PEG, I experienced a lot of itching. Gradually it subsided. After 33 months on PEG I take long, hot showers and consider a little itch as a nuisance. Last week my specialist and I discussed remission. He was very optimistic. If my blood counts continue to hold on the lower dose and if the extensive blood work scheduled for March is favorable, I may be saying goodbye to PEG.

caroline_284 profile image
caroline_284 in reply to charl17

I wish you all the best, and hope everythi g continues well.

EPguy profile image
EPguy in reply to charl17

Your experience is hopeful for those of us considering the switch to INF. I've read that it is quite possible to stop therapy for some on INF (PEG). A study I read also said there was minimal risk of resistance to INF if you need to restart.

It seems to take about 3 years for the real benefits of INF to be evident in most cases.

If you've not seen it, check the post "Long Term INF Results" It should be encouraging for you.

ainslie profile image
ainslie

Pegasys etc can make itch worse for some but not many, it may go away if peg does it’s job on the disease, for me it was too itchy so had to stop. UVB and Ruxolitinib sorted my Olympian itch issue

caroline_284 profile image
caroline_284 in reply to ainslie

Thank you for your reply.

Jonnymitts profile image
Jonnymitts

Hi I’ve also recently started on interferon 45 every two weeks and since my last injection a week ago I’ve also had itching all week and an itchy scalp, so I am trying emollient soaps and some itchy scalp shampoo. I am also taking anti histamines though don’t seem to help much.

caroline_284 profile image
caroline_284 in reply to Jonnymitts

Some people seem to think a mix of 2 types of histamine might help?

Jonnymitts profile image
Jonnymitts in reply to caroline_284

Thanks do you know which ones as Benadryl only lasts a few hours? If I ever get in to see a GP again in the near future I will ask to se EDF I can be prescribed some..I am due in for my next round of bloods next week assuming they are still doing them so could I ask my specialist then.

caroline_284 profile image
caroline_284 in reply to Jonnymitts

Sorry I dont, but worth asking.be interested to know as well.

Helpatlast profile image
Helpatlast

I have been on Peg for three years and yes get pruritus I did when first on it, then not all for some time and then again do in last six months - it is a Peg side effect for some - I use antihistamines and barrier creams and somehow it stops again for a while - keeping cool and dry helps too .

caroline_284 profile image
caroline_284 in reply to Helpatlast

Thank you thats helpful to hear

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