PV and dreadful itching: Hi everyone, I am 4 weeks... - MPN Voice

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PV and dreadful itching

Yvette49
Yvette49

Hi everyone, I am 4 weeks into having interferon injections, I had my last one last week, I had a blood test yesterday and see the haematologist tomorrow, and I imagine my dose of 90 will be increased as I am itching like crazy. Has anyone else experienced this while on interferon.....and what can I do, if anything to lesson the itching ?

Thanks, yvette 💞

28 Replies
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Hi Yvette, I know its horrible the itching. I get it without being on meds and the best things that help me are: cool water to bathe in, plenty of fluids and loads of moisturiser. My skin likes Olay or Aveeno. Hope this helps. Kind regards Aime xx😻

Yvette49
Yvette49 in reply to Aime

Thanks Aime,....driving me crazy, going for a walk in the cold :-)

Xxx

Aime
Aime in reply to Yvette49

Yes cold does help . I quite often have arms/legs hanging out of the bed which does help a bit sometimes but then fall asleep and waken with very cold limbs! Sometimes its difficult to win.xx😻🤣

Yvette49
Yvette49 in reply to Aime

Ha ha, the picture of you doing that....is me too, that’s how I sleep 🤣🤣

Just had a freezing cold walk, and it’s helped a lot ( I am not pulling my hair out now :-)

Xx

Aime
Aime in reply to Yvette49

🤣😻not a pretty picture, trust me!!.

Yvette49
Yvette49 in reply to Aime

Ha ha same here 😱

Inca
Inca in reply to Aime

Hi Aime,

That is interesting,I have just discovered Olay is a really good moisturiser for my face........Always used Clarins ,but in U K I wasn't near enough to a store for my usual and just bought the Olay by chance really,it suits my dry blotchy skin well,can't buy it in France so will look on Amazon!Hope you are keeping well,Best to you Sally

Aime
Aime in reply to Inca

Amazon has the olay moisturiser for extra dry skin. Comes from USA I think. I can get face moisturiser in uk but not body stuff. I buy a batch at a time.xx keeping ok thanks, dealing with some different health questions- sjogrens syndrome and possible stomach ulcers

So got blood tests and more appointments to go to but it makes a change from haematologist! Nursing asore palm of hand , got jab in it as thinks my carpal tunnel has returned. Hope you're ok

Kindest regards Aime xx😻😻

Inca
Inca in reply to Aime

Oh Aime you have to put up with so many different troubles....will the Drs ever sort things out.

I too have more tests coming up....really not in good shape just now.

Must remember too that age is catching me up and makes me so tired and feeble!!

Looked on Amazon,yes you are right....wonder why the body moisturiser is not available in U K....actually there is soooo much here for skin and body care,hard to know which is best,Roche Posay is good for itching,they do medical creams etc as well.

Like the Olay for face.....used it in my teens when it was Oil of Ulay!!!Dont know your syndrome but hope it gets better soon.

Keep strong Aime...I know you are a fighter.Sally .....Bisous.

Aime
Aime in reply to Inca

You keep fighting too Sally, you are as determined as I am (I think) not to let illness get you down. Some days it is difficult but we’ve all got wonderful friends on this forum to support us and someone, is always ready to help.

Spring is coming, birds tweeting and pairing up! Grandkids will be down tomorrow!😻😻😻😻 Hope tests go ok, keep in touch xx

Did you have the "itch" before you started interferon?

Weather and the drying effects of central heating might be adding to your discomfort.

Hi, yeas a few weeks before.....as I have been off of hydroxycarbomide now for about 2 months.

I went for a cold walk, and it has eased a lot 😊

Mazcd
MazcdAdministrator in reply to Yvette49

Hi Yvette, we have some good advice on our website which might help

mpnvoice.org.uk/living-with...

maz

Yvette49
Yvette49 in reply to Mazcd

Thank you Maz 👍

Hopefully the interferon will, in time, help get you back to how you were on Hydoxy. Its tricky when the underlying condition and the drugs can cause the same/ similar symptoms.

I found two things that help. Manitain a good moisture barrier using a ceramide based cream (e.g. CeraVe). Wash with mild soaps like Dove - or ceramide based like CeraVe. For strong flares (e.g. puritis or eczema) - I use Eucrisa. Fantastic topical med that really helps.

Hope that helps

I’m on pegasys for over 3 years. I had the itch before starting Pegasys. Over the years I’ve discovered everyone’s itch improves with different things, you just need to find what helps you.

For me. Very hot baths, antihistamines, amitriptyline, hydration, barrier creams, double base shower gel, avoiding change in temperature, drying quickly with heat, avoiding refined sugar, no tight clothing, saunas, UVB, Beta Alanine. For me, none of these things work for long. I rotate them.

Good luck being your own detective.

The itch is my worst symptom. It often controls my body and thought process. It is painful and debilitating.

My GP is very helpful place for suggestions of other meds.

Sweetlucy
Sweetlucy in reply to EleanorPV

BETA ALANINE works like a miracle for me. Two tablets an hour before a shower and no itching. I

My haemo made a note of it. I pray it keeps working.

Hi Yvette. Cetirizine has been my lifesaver when it comes to the itching. I am on no medication now , apart from Aspirin, since I had to stop Hydroxy because of side effects. The itching is worse now and, like others , it's especially bad after a shower. Cetirizine for me is a wonder drug. It usually takes about an hour to take effect, then it works for most of the day. It says on the packet to take just one a day, but my GP assures me that it is fine to take up to three as long as they are spaced out. At the Nottingham forum recently, a fellow sufferer said that she takes Cetirizine before the shower and it stops the itching. I take a tablet about an hour or more before the shower and have found it reduces the itch dramatically. It doesn't get rid of it completely, but it helps me a lot.

I hope this helps. The itching is one of the worst symptoms of these MPNs.

All the best

Sandra

Yvette49
Yvette49 in reply to Splb3317

Hi, ah this is good to know, thanks......as I have just been given some from my haematologist 😁

JackLina
JackLina in reply to Splb3317

Exactly because it is not itching from skin dryness (although we probably all have that now) but due to histamines. A change in diet will help. try an anti-inflammatory diet and occasionally antihistamine tablets. This has been my experience and now I cut out certain foods from my diet, I suffer little. Not completely gone but I can usually link a bout of itching to diet or water, of course!

Yvette49
Yvette49 in reply to JackLina

Ah thanks JackLina will certainly try the diet route 👍

I thought I had read sompleace that Benadryl or Cetrizine helps, it is an allergic response is what I have been told. I get itchy when the seasons change and after a shower in the summer. Most of the time it goes away within minutes, I can not imagine what it must feel like for you!

I used to have a small drink of fresh orange juice every morning and enjoyed raspberries on occasions but discovered that both of those fruits were causing me to itch. I very occasionally eat about 5 raspberries nowadays and have not touched oranges or the juice since. Much improved. Sadly!!!!!

Although I try to follow the diet well I do fail quite a bit but to manage it reasonably, even intermittently, has made a huge difference to my occurrences of itching.

I hope it works for you. I always use Oilatum in the bath and rarely suffer now from water related irritations. All the best. P.

My wife uses Liz Earle body cream daily on her back after washing with water wipes.

When it gets really bad she uses Betnovate ointment, which gets on prescription after attending Dermatology at the local hospital.

Itching is an issue for me on Interferon but not sure it automatically means an increase in dosage.

I’ve managed to put up with it so doesn’t sound as bad as what you’re experiencing.

Some possible solutions been mentioned. Let us know how you get on & hope it subsides for you.

Would it be really a good thing to get rid of itching in term of survival ?

Shouldn’t we cherish our pruritis to some extent ? :) « Pruritus was identified as a favorable risk factor for survival »

nature.com/articles/leu2013...

True.....but thank goodness it has all calmed down now 😅 now taken over with mouth sores flaring up again 😥

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