Coping with itchiness and side effects of peg-interferon

[emcee19]

Hi everyone, I'm new to this forum and relatively new to pegylated interferon. I haven't really had the side effects I was expecting but after a month or so on it my skin is now so itchy that it's extremely painful to shower or to have any water touch my skin, basically. Does anyone have any experience of this, and any tips for how to keep my skin clean without aggravating it? I've tried using fragrance free moisurisers but they only seem to help minimally. The other main side effect I'm noticing is my hair falling out, so it's a been a bit of a bummer to be on it so far :/

[Robeets_33]

Hi there, I have been on pegasys since January 2021, I have MF and suffered with itchy skin before I went onto pegasys. My hair started thinning a couple of months ago but seems to have stabilised now, hairdresser confirmed still new hair growth which is positive. My skin is very dry, but that may be my age. Hope things improve for you.

[emcee19 in reply to Robeets_33]

Thank you, good to hear things stablised for you!

[Hearingu]

fexefenadine helped me . Once the platelets started to decrease the itching stopped . I also drank plenty of water. It was a brilliant drug for me. I did have thinner hair but that changed when I stopped the drug . I was on 45mg injections for 2 years , had minimal side affects and have been off meds for 2 years now . Blood levels have remained stable . Three monthly check ups, daily aspirin, vitamin D and turmeric with black pepper. Mediterranean diet. Working for me . 😄

Hope this helps ! Good luck and take care

[Bellakeira in reply to Hearingu]

Wow that's amazing and encouraging keep up the good work

[emcee19 in reply to Hearingu]

thank you, my doctors do seem to think that getting platelet numbers down even more might help. Glad the meds have worked out for you!

[hunter5582]

Claritin worked well for me to manage IFN-related itching. For smaller patches of itchy rash, Eucrisa also helps.

[emcee19 in reply to hunter5582]

thank you, I hadn't thought of trying antihistamines so that's a good shout!

[Exeter21]

it could be dose related. I was weekly on Peg but no itching mine was migraines. Reduced to lower dose monthly no itching no headaches & really want to stick with this drug as best for me. No tiredness. Hydroxy creased me hair falling out ached everywhere & permanently tired. The drug caused it as fine once changed to Peg hair growing again . 👍

[emcee19 in reply to Exeter21]

that's so interesting, I had no side effects after the first couple of weeks on HC which I was on for several years. Good to hear that Peg worked out well for you

[Cityreach]

Hi can't help with Peg side effects as I have not started yet due to start next month when I return from holiday but I do suffer with the dreaded itch even before starting it so I am worried how much worse itch will become, over last year I have tried all different moisturisers can't say any work so resulted to ice pack's until itch passed just kept moving them around the itch areas, it don't stop it but does help I also bought an ice roller it's really for face I keep roller in freezer then foll that over skin same as I would use the ice pack's, recently the CNS nurse asked had I tried a menthol moisturiser I has never seen this mentioned anyone, I googled it and thought it was worth a try it's Dermacool and I have the 5%, also comes in 1 and 2% but read 5% was a game changer although that was not from reviews with people with MPN so I thought would give it a go at 5% it's not particularly cheap between £25-£30 for 500g pump dispenser but I asked the hospital to ask my GP to prescribe if your in UK that's a prescription charge, so I have been using for last 10 days it don't stop the itch but the feeling from the menthol really distracts the itch the cool tingling from the cream is a good distraction and that last about an hour in my experience by then the itch has passed too, its strong menthol smell and kind of gets in your eyes and throat but it's the best I have tried so far, time will tell if it continues to have sane effect but worth a try, good luck if you try but I know myself the itch can be terrible which is why I been putting off starting peg incase it increases an already bad itch

[emcee19 in reply to Cityreach]

this is so helpful, thank you! My doctors seem to think that the itching is the underlying ET and that maybe a higher dose of peg might help (which feels weird as I didn't have much itching before starting it)- who knows. But I hope it doesn't get any worse for you when you do start peg

[gilded]

Hello emcee19. I’ve administered Pegasys for about 15 months. ET sufferer. Yes, itchy! GP prescribed a steroid cream which was useless. Then prescribed Contraben ointment that one rubs in several times a day and itchiness abates. I rub it in after a shower and whenever I feel itchy throughout the day. I think, but not sure, that it’s also available without a prescription. My hair is thinning but this isn’t attributable to the medical condition. It’s because in the 1960s I adopted the fashionable beehive hairstyle that wrecked the roots. To conceal my bald patches, I dust on a powder (same colour as my hair). It’s available at Amazon and works a treat. I’d give you its name in this memo, but I’m downstairs and the powder is upstairs.

[gilded]

Correction! The lotion is called Cetraben. The hair product is called Toppix.

[emcee19 in reply to gilded]

thank you for replying, I will check out Cetraban!

[Itch]

Hello, I have MF, not on any treatment but experienced unbearable itching. Prescribed Fexofenadine 120mg twice daily has totally eased it. All the best. Susie

[emcee19 in reply to Itch]

thank you, that's good to hear! I'll check it out

[Kormoran]

Hi, I have been on interferon since February 45mcg /week. when my platelets were 1012. By April my skin was super itchy and so I stopped for a couple of weeks and then restarted. Still very itchy and have used moisturiser and have used eumovate cream on the angry red rashes which has helped.

Now for the good news.

On the 22nd April my platelets were down to 265.

They haven't been that low since 2005.

Being around 800 plus since et diagnosed.

I get to chat with haematology next week.

I will let you know.

[emcee19 in reply to Kormoran]

great that they've come down that much! thank you for the recommendation

[ainslie]

itching can get worse with Peg for a minority, hair thinning also. It varies so much from person to person but for you it may getter or worse with time, some benefit from a higher dose with itch, somebody else on here benefited from a lower dose. In the meantime apart from some of the antihistamines etc already mentioned UVB light therapy works for most, as a Olympic itcher I did it daily for 10 years and worked well, feel free to ask me about UVB if you wish to pursue it. Some get good benefit from Beta Alinine, it’s been mentioned on here so you can search or ask. Finally for itch is Ruxolitinib which will likely get rid of it but that may mean quitting Peg OR combining with Peg. If Peg is working well for you otherwise you may want to stay on it as it MAY for some help to slow progression, although data on Rux is now coming out implying the same PERHAPS although with current data Peg might be better on that front if you can tolerate it. Rux is better on the hair, it’s used as a treatment for certain kinds of alopecia. You have my sympathy re the itch , I am now on Rux which sorted the itch , Peg made me extremely itchy and depressed which is a pity as it would be my drug of choice if I could tolerate it but one has you weigh up the risk benefits and QOL.

[emcee19 in reply to ainslie]

this is so interesting to read, thank you. I haven't come across Rux before and I'm glad it seems to have worked out for you

[Threelions]

Hi,

I’ve been on peg for over 3 years.

Itching is still present but steadily got better over time. It is infrequent & totally manageable now-so a good possibility it will decline for you also.

I’m more than happy with this (now minor) inconvenience as the drug has been fantastic at regulating my platelets👍

I’m sorry to hear about your hair thinning but am unable to assist with any advice on this as I was hereditarily bald well before my diagnosis 😀…….I just assure myself that “grass doesn’t grow on a busy street”

Seriously though, I wish you the very best & a huge welcoming hug from the forum. 👍

[emcee19 in reply to Threelions]

thank you so much very good to hear that things improved over time for you, I definitely want to stick it out for the time being so will see how it goes

[3195]

I was diagnosed with Essential Thrombocythemia in 2000. I am on Pegasys for the first time, and after another attempt on Jakafi. The itching came back with vengeance! Jakafi had kept it under control. I had to start taking a prescription antihistamine. I committed to give Pegasys at least 2 years, so I'm in it for the long haul!Lori, ET

[Taz777]

For me I notice last year round this time I started to itch on my right side breast only first time. This lasted until summer holidays. I didn't use any creams. Now the itching has come back to the same side of the breast. Not sure if the season change triggers my body .

[MAP44]

Hi

I was itching before diagnosis so the pegasys wasn’t the cause of my itch. I have PV Jak2 and on Pegasys for 13 months. My itch is usually on my arms, legs always and full body occasionally.

I found a very hot bath was my solution to the shower. I Take it only 2 times per week. Once getting out I apply a thick coating of oil and lotion. Over the counter antihistamine's did nothing. I visited the health store and nettle and Querciten are recommended for allergies. They worked for me. At nighttime in bed I have a heating blanket I turn on and the warmth eliminates the itch and achy legs once you lay down. Get in your undies not pjs as the heat feels great on the bare skin. In winter the regular blanket and sheets can drive me crazy so then I wear leggings and a long sleeve shirt ( tight fitting a must).

My platelets and reds are great and itch has lightened to an occasional occurrence. I am in Canada so it does seem more annoying in winter when everything is drier.

Drink lots of fluids. 🍻

[emcee19 in reply to MAP44]

Thanks for replying! I think at the moment a hot bath would be too much (any water is painful) but good to hear your experience and that things are more under control now. Leggings will be a must this summer I think

[MAP44]

Surprisingly distraction also works. If you put on your favourite movie or go for a walk outside( any season) it takes a bit but you will forget about it. It can be a blood reaction or a histamine reaction. Mine are histamine based because the nettle tea, nettle pills or Querciten worked well. It has lightened a lot this last 4 months. I am assuming it is because all the bloods are in check and the pegasys is in control, but who knows. 🍻😎