Itching/pruritis as a side effect of Pegasys

[JackLina]

Pegasys and this crazy, unmanageable itching!!!!

Does anyone have a recommended treatment for the pruritis caused by Pegasys? I have been prescribed Eurax but this does nothing really. It is unbearable.

Someone please........

[fannetastic]

Eurax is useless as the itching is coming from the inside not the outside. I was near suicidal with it, they tried me on loads of potions and lotions until I realised that nothing rubbed onto the skin helped. Eventually I was put on Fexafenadine . It takes a few weeks to get into your system but oh boy it was a life saver. Some manage with over the counter meds like Clarityn or Pititeze. Some have a combination of both, but been there, done that and just spent months in bed wanting to die. I can fully understand what you are going through and sympathise . Perhaps others can give some other advice. A little tip I used wet towels in iced water. Wring them out and put on most affected areas. Mine was my arms. Hope you find some relief soon.

Hugs for you.

Anne.

[nannybarb08 in reply to fannetastic]

I also suffered with itching for years before I was diagnised with polycythaemia and if I had a gun I think I would have shot myself I think the drs thought I was mad, I,m know on fexofenadine 180 and this helps a great deal, I also shower in cool water the coolest I can manage as too warm water makes the itching return. give it a try it helps perhaps it may help you hope this may be helpful regards Barbara x

[fannetastic in reply to nannybarb08]

Yes, I was at my wit's end. I had bad itching starting about the year 2000 and saw skin specialist's and all sort's of people. I was finally diagnosed 2011 after years of misery. I truly wanted to die. Not being dramatic but Fexofenadine 180 saved my life.

Anne

x

[JackLina in reply to fannetastic]

I used my Oilatum Bath formula for the itching and it's worked. Always used it reviously just because I have dry skin but not on prescription any more. well worth buying though. I have no itching after a long soak.

[Paul123456]

I’ve found Pegasys has reduced my pruritus. How long have you been using Pegasys and what dosage? And are your blood counts now within normal limits.

If you desperate, you could try a couple of my batty theories. I started with an anti inflammatory diet which helped a bit but the real breakthrough for me has been my anti histamine diet. My ‘top meal’ is garlic and red/white onions cooked on gentle heat in olive oil. I then add watercress and pea shoots and blend into sauce or soup (element of luck which!). I then eat with more veg (incl broccoli) and brown rice or brown pasta if carbs required.

Works 100% for me, still get minor itching post bath or shower but nothing rest of time.

If I revert to excessive amount of high histamine foods (strawberries, tomatoes, cherries, cheese etc) the itching comes back. However it’s like filling a bucket, can have so much high histamine food per day with no significant problem but don’t want to overfill.

There is a degree of logic behind my mad diet - the itching is result of mast cells released by histamines.

Best wishes Paul

[ihavegotet in reply to Paul123456]

Paul

Pegasys has helped me too with the itching and tingling and all that uncomfortable stuff. I do eat an anti-inflammatory diet as well.

[JackLina in reply to ihavegotet]

So weird. we really are all different aren't we.

a a child I had this and was given Synalar cream which did nothing but slightly ease it. I really do think the condition was connected to what I have now but the pruritus hasn't been as bad until I was on Pegasys.

[Paul123456]

The other point I should have made is the pruritus correlates with better prognosis, if that’s any compensation. I’ve checked this with a couple of Hems after seeing it in video presentation. Both agreed but didn’t know why or to what extent it improves prognosis.

Anyone?

[JackLina in reply to Paul123456]

Ooooh! I had just administered my 4th. injection of 45mcg when it began. My platelets had dropped at that point by 100.

All is good then....?

[Aime]

Hi, I have PV but on no meds so can’t blame them for my itching. I’m on three anti histamines a day plus keeping well hydrated plus using a good moisturiser (Olay and Aveeno suit me) helps a lot.

Kindest regards Aime xx😺😺

[JackLina in reply to Aime]

Thank you Aime. I'm using the histamine light diet from now on, as much as I can and realise I have been really bad due to eating too many raspberries, strawberries, pineapple and all those really nice, fresh fruit and vegetables we love best.

I find that applying creams has no effect. I will let you know how I get on.

thank you for your input.

[bordeauxgirl]

Hello Penlelope, I have PV and Pruritus, My haemo doc doesn't seem to take it seriously, I now have had so many different creams from the so called Skin specialist, but the itching and scratching goes on, but nothing worked, I too am on anti-histamines, but one thing I have found ok it rubs on but it does calm down the skin and lets me forget about it for quite a time day and night. It is called Bio-freeze. Try a small tube to start , I am hopeful it will help you too. It is a total nightmare for us who suffer and the docs say 'well it's not that bad. If only we could give them a dose. best wishes June

[JackLina in reply to bordeauxgirl]

Thank you for this.

I am going to try and follow aa histamine intolerant diet as suggested by Paul123456. After reading a lot following reading his email, I will ensure I don't restrict my intake of other foods. It is very noticeable that my itching has been a lot worse when I'm eating lots of my favourite fruits, namely raspberries, strawberries, and all things high in histamines.

Nothing I put on my skin helps but I tested this method tonight and my itching has virtually stopped.

Happy bunny. thank you Paul 123456

[JackLina]

In addition to this I must say that I have, for many years, steered clear of processed foods as much as I possibly can.

Thank you everyone who has given me some direction to controlling this. I really appreciate you taking the time.

[johoho]

I notice itching more if i eat meat or shellfish. Otherwise, i shower later in the day when the pruritus is less triggered for some reason. J

[EleanorPV]

We all seem to response differently. For me, what usually helps, is Ranitidine and Hydroxyzine. Also drying my body quickly. And keeping the skin and body as hydrated as possible. I’m starting photo-therapy, for the winter time.

[JackLina in reply to EleanorPV]

Photo-therapy? Please explain.P

[EleanorPV in reply to JackLina]

This is through dermatology. 3 sessions a week in a controlled ‘sun bed’ narrowband ultraviolet B (UVB) light. . I’m starting this towards end of September.

[JackLina in reply to EleanorPV]

That sounds interesting. What is it treating?

[EleanorPV in reply to JackLina]

I’ve been referred to dermatology for my pv itch. I said to my haematologist, I can’t stand it any longer. My itch is far worse when I don’t have exposure to the sun. Bingo a referral.

[Kari1961]

Arrrgghhh the dreaded itch! It's the bane of my life. I lose lots of sleep due to it as for me it's worse at night.

I have PV and even when my HCT is at a lower level I still get pruritus.

My Haem prescribed Cetirizine, but it doesn't really work. One tip I can pass on is to apply a gentle moisturiser - I use a baby moisturiser called Child's Farm and I keep it in the fridge so it's nice a cold when I apply it. It's very soothing and especially good during the hot weather we're having as it instantly cools my body down.

[Ebot]

Hi. Itching goes with the territory but the drugs should help ease it. Certainly Hydroxy had that effect. All the same haem team (Guy’s) prescribed oral antihistamines just in case I had a flare up (I haven’t). They didn’t hesitate. It’s tough but I think meds, local skin water management - we all have our methods! - and watching your intake of dietary histamines should make a difference. Wishing you well.

[Aime]

Hi, I eat a load of raspberries, etc and no increase in itching so not sure. I guess we are all different. Kind regards Aime xx😹😹

[JackLina]

I am not jealous person but if it turns out that I itch and yo do't with raspberries, I will be sooooo jealous. I'm going to eat some n ow to test it out.......

[Aime]

Oh I don’t want to be the cause of more itching for you.....🙀🙀

[pnArt]

I have the maddening itching with PCV but it seems very random. I go for months without any and then I have a period of a week or so where it drives me up the wall. But I've never been able to correlate it with my counts. High Hct, low Hct, it doesn't matter. It's usually worse right after a hot shower.

Unlike some others here I DO find that a topical anaesthetic does work - 20% benzocaine helps a lot.

I just started Pegasys four weeks ago and I have noticed a recent increase in itching, even as my counts have improved. It might just be random, but since α-Interferon induces the production of Interleukin 2 the itching could also be autoimmune.

The problem is that we don't know for sure why Pegasys works with PCV. Is it the interferon itself, or is it Interferon's stimulation of secondary cytokines like the Interleukins? If it's the latter then MPN patients might want to avoid H1-blockers because they inhibit some Interleukins.

[pnArt in reply to pnArt]

...this is just a follow-up to my previous post. I've now been on Pegasys for 5 weeks and the itching got a lot worse, so since I have a science background I did some research. Itching is a common side effect of immunomodulating cytokines like interferons and interleukins, so it is well documented in the research literature. So even though many of us had itching from our PCV the itching we have with the Pegasys may be independent of that.

Also well-documented is that the gabapentinoids such as Gabapentin and Pregabalin seem to be effective to treat it. I put together a paper for my doctor citing the research to convince her to prescribe Gabapentin for me. It seems to work well, but I'm still experimenting with the dosing and administration schedule, because it makes me drowsy and I'm trying to find the minimum dosage to get the job done.

[pepper-]

Have pruritus from PV. Tired all the over the counter antihistamines with no help because pruritus is from de-granulation of mast cells containing histamine, not from a common topical or air borne irritant. For immediate relief, in particular if excessive itching prevents sleep, I apply a very modest amount of Clobetasol Propionate Ointment 0.05% for immediate relief that continues for the next few days. Be cautious though because this drug is a strong steroid that if over used can cause systemic negative side effects. I use only when desperate, and then very modestly.

[RoundTheWorld]

Read with interest. I had tormenting aquagenic pruritis years ago (2016-2017) and saw a dermatologist. I was putting ice packs on my skin for up to an hour sometimes after washing -it was really miserable. My platelets started to rise a couple of months after I saw the dermatologist so maybe this was my first indication of an MPN? Or could have been coincidental.

Dermatology patch tested; nothing showed up so they gave me general advice on how to manage very dry skin. After a few weeks / months of being super-careful my skin calmed down and has been manageable, with the occasional flare up, since. I'm nervous that when I start cytroreductive therapy itching may come back but won't know until I get there...

In case it helps someone else, the things that helped me were:

- sticking to a v few washing products (me and my clothes!). I use a liquid soap designed for babies / young children and a non bio washing liquid for my clothes

- hydromol intensive (with urea) on my arms daily. Sadly they've (maybe temporarily) stopped production but plain hydromol ointment is working for now. The GP said the urea (10%) was what made the difference at the start and I was so grateful for it at the time.

- keeping my arms and legs covered (including in bed) in natural fibres in cold seasons when my skin dries out

- after baths/showers covering my skin as soon as dry. Happily this doesn't bother me in the summer much now (unless it gets v humid) so I can now swim again if act as soon as I feel itchy!

A few years later I started taking HRT so that may have helped my skin too.

I suspect that even if mine was linked to the start of MPN some of it must have been possibly coincidental dry skin as otherwise the external measures wouldn't have helped but at the time I would have tried (almost) anything to get the itching to stop!