itchy skin

[Franko21]

hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I have developed terrible itchy skin , after showering , clothes touching me even my fingers itch , the Interferon has worked well apart from this with platelets down to 366 and all bloods fine . I have spoken to my Haematologist consultant and she said keep using for another month and see if itching stops . Has anyone else had the dreaded itching and how have you coped with it any advice much appreciated .

[ainslie]

fairly common on Inf unfortunately, your doc maybe correct it may go away with time, maybe not. I found UVB phototherapy helped itch a lot. Some have added Rux to inf and that nearly always sorts the itch. Some use Beta Alanine and various anti histamines which help for some. You have my sympathy as a former Olympic itcher.

[Franko21 in reply to ainslie]

Thank you I’ve never heard of UVB photography but will look into it and so glad it’s working for you . I’m taking antihistamines but not sure if you can take them long term . It’s a shame as I seem to be tolerating Interferon well apart from that.

[ainslie in reply to Franko21]

I stopped UVB a few years ago once on full dose Rux, I did low dose UVB daily for 10 years, it helped a lot when venisection only. When I tried Peg it put itch through the roof, not common, when I stopt Peg it took 3 months for itch to settle again, that’s very uncommon though, I mention this as things can take a while to change.

[Chicagopv in reply to Franko21]

I use hydroxyzine for itching, brand name Atarax. Benadryl helps, too. But the best was switching to Jakafi.

[Steve_Essex]

I had a bad spell of itching. which came on randomly after showers.. . more Pv related as not on IFN.. I knocked it on the head using high dosage beta allanine which I took 30 mins before my shower or as soon as itching developed.. it made my skin tingle slightly but wasn’t unpleasant and stopped the itch which was debilitating… thankfully haven’t had a series of itching episodes since… and don’t take it anymore… but have some to hand just in case

[Cityreach in reply to Steve_Essex]

Hi Steve Hope you don't mind me asking where do you buy beta alaine I looked in Holland and Barrett and they only had tablets not powder I am Dubious about buying powder on on internet randomly and how much do you take I have the itching after shower and due to start Peg this is one of my worries the itch could get worse I have PV too

Thanks

Jill

[Steve_Essex in reply to Cityreach]

Hey I get mine from bulk.com, a very reputable sports nutrition site.. been using these guys for years for protein and other supplements / vitamins… I’ve also used their beta allanine so can attest to it working for me..

I took 2000mg 30 mins before shower.. I’m 95-100kg so depending on your weight you may want to adjust down.. perhaps start 250-500mg and see how that works.. you can always dose up a little by 250 increments each time till you get to a point it works..

Theres plenty of articles online about the safety profile at high doses up to 5g daily… So the roses you may get to should be well below that

Hope it works for you

Steve

[Franko21 in reply to Steve_Essex]

Thank you Steve you have been very helpful, I’ve look BA on Bulk and it’s on offer too so there’s a bonus . It does say it can cause tingling is this not the same as itching or as it’s such a small dose this may not be the case . I’ve ordered mine .

[Steve_Essex in reply to Franko21]

it will make you tingle little and feel a little warm under the skin initially… I quite liked the feeling and was certainly better than the itch.. persevere with the dose and hopefully will help!

Any questions when taking it feel free to direct message me too!

[Franko21 in reply to Steve_Essex]

thank you you have been very helpful and yes I’ll be back if I have any questions, this is such a great group we have here 🙂.

[Cityreach in reply to Steve_Essex]

Thanks Steve will give it a go

[Franko21]

Thank you , I’ll try anything and I see they sell Beta alanine in Holland & Barrett .

[ainslie in reply to Franko21]

maybe best start low and build up, it made me pretty tingly all over, still better than itching though, others on here use BA they may chime in re what dose

[Steve_Essex in reply to ainslie]

yeah agree.. I worked up to 2000mg but I’m just under 100kg… I’d start at around 250-500mg and go from there

[Steve_Essex]

I can’t attest to the Holland and barret one, I got mine from here bulk.com as I usually get my other stuff like protein from there too.. and it’s good quality

[Franko21 in reply to Steve_Essex]

great I’ll have a look at Bulk.com and 250 mg starting point . This information is much appreciated.

[Conneryfan]

The itchiness after showers is one of the symptoms I had that led to ET diagnosis. I have sensitive skin anyway, but it feels different. What helps me is moisturising really well after a shower. Good luck with finding what works for you.

[Franko21 in reply to Conneryfan]

Yes I had itchy skin before too if I used any different soap powder or body lotion . Maybe the Interferon heightens this .

[PVPVPV in reply to Conneryfan]

Try patting dry rather than rubbing. I worked for me.

[gilded]

Hello Franko21. I’ve been on Peg 90mcg fortnightly for about 14 months . Itching yes for many months although for the last couple of months, itching has almost entirely subsided and only a bit of itching after showering and that is coped with by slapping on Cetraben lotion.

[Franko21 in reply to gilded]

Thank you this is encouraging to know there might be an end to itchiness . Slapping is such a good tip and I’ll try Cetraben lotion . Thanks for sharing 👍.

[AndyT]

I’ve been on Pegasys for nearly 8 years and have experienced some itching which I’ve managed to control with over the counter antihistamines (Cetirizine seems best for me) and moisturising creams. Also eliminating other triggers such as scented bathroom products, biological washing powders etc helps. If over the counter medications don’t help your doctors may be able to provide something stronger.

[Franko21 in reply to AndyT]

Thank you , I do take antihistamines but was not sure you could take them continually. I’ll have to discuss it as you say with my Haematologist but it seems such a trivial thing and really wanted Interferon to work . I’ll try all the suggestions and see how I go .

[Hopetohelp in reply to AndyT]

do you take the cetirizine just before the shower?

[AndyT in reply to Hopetohelp]

not particularly, as mine is not water related - I just take it when the itching is bad

[quanglewangle]

Hi. I also have a bit of itching but nothing to do with showers although this thread prompts me to add a thought or two. A common side effect of ET and Hydroxycarbamide is itching - mine is minor and controlled with an antihistamine. But the talk of showers being involved prompts me to offer up a comment or two. When young I suffered with shaving rash but it vanished when I stopped using soap and aftershave - just water - and when we installed a shower I switched to shaving in the shower every day ...again with no soap or other chemicals. For thirty years now I have not applied any chemicals, shampoo, deodorant, soaps and suffer from no itching or rashes. Perhaps if the itchy peeps tried this approach it might help?

[Franko21 in reply to quanglewangle]

Thank you , I think this might be a good idea to try at least if I try chemical free then I will know if it’s that and not the Interferon . I tend to use the same products all the time though but I’m willing to try anything.

[emcee19]

I'm in a really similar boat to you, but I'm just on 45mcg of interferon per week. I realised after a while that it was heat and friction causing the itching and not necessarily the water itself. The best way I cope with it is cold water to wash (not ideal!) and then very very gently applying cold moisturiser that's been in the fridge, and then just leaving my skin for as long as possible, as any rubbing (or putting clothes on too quickly) just aggravates the itching. Good luck- it's really not a fun situation to be in.

[Lilly1958 in reply to emcee19]

Iching was my first Symptom of progressing from ET to PV., I’m trays everting and Only beta alanine amino acid supplement helps me .This is miracle. Before shavers after breakfast take half tea spoon BA and put in glass water ,and waiting 60 minutes,and you can go for hot shaver and you be free of iching.You can buying in healthy shop or ordering on Amazon.You can google Beta Alanine and see BA use people before exercising. I’m understand you ,I’m was same you until people on PV forum recommended to me, and I’m use only 2 month and my iching gone totally, but my allele burden from 45 % drop on 0,5-2% , for 1 years on Pegasys , and I’m don’t know exactly what is reason for stop my iching , BA or my PV not aggressive like before with height allele burden 45%.Best wishes from my heart.

[Franko21 in reply to Lilly1958]

thank you so much for this positive post and for giving me measurements that is so helpful 🙂 .

[Franko21 in reply to emcee19]

Thank you , you described it exactly how I feel I’m so relieved to hear other people’s experiences as I thought I was going mad , it really makes me not be able to think straight either while I’m feeling itchy like my brain is fizzy too . Great advice about cold shower & moisturiser. If you’ve never experienced this it sounds trivial just itchy but it’s an awful a symptom.

[PVPVPV in reply to emcee19]

Try patting rather than rubbing. It worked for me.

[havashan]

I controlled the stinging, burning feeling I got from water with beta alanine. I buy it in powdered form on Amazon and dissolve 1/2 tsp of it in a glass of water and drink it at least 30 minutes before getting in water. It makes a huge difference for me. It does give me a slight tingling sensation when I first drink it, but not unpleasant and nothing like the terrible reaction I was getting from water. Hope it helps you. My doctors are fine with it.

[Franko21 in reply to havashan]

thank you a few people have recommended this and now you too , good to have positive feedback it does help 🙂.

[Threelions]

Hi

Just for reference, I found that itching subsided after a few months of commencement of Interferon treatment.

All the best

Mark

[Franko21 in reply to Threelions]

thanks for sharing that’s great to hear gives me hope 🙂.

[Ovidess]

Whatever unpleasant sensations I have are confined to my torso and arms. It never seemed to be connected to bathing. I have PV and was on Besremi for 6 injections. When I stopped it because of liver enzymes rising, I eventually broke out into a rash and wondered if it was part of the body cleansing itself of pharmaceutical toxins. But the periodic burning/freezing sensation and pin sharp occasional twinges seem to have continued somewhat into my non interferon period, so is it the disease or the interferon?

[quanglewangle in reply to Ovidess]

Hello - I believe that many of the 'side effects' of our control medications for MPN are simply side effects of the conditions. I am on Hydroxycarbamide for ET but have the same symptoms - itchy arms and trunk, stabbing pain in toes, hot burning sensations on upper feet (erythromalalgia) that all sound like your reported problems. All of my symptoms are annoying but fairly low level and also include skin damage on face & scalp (actinic dermatosis) and numbness and tingling in arms/hands (peripheral neuropathy). I looked at changing to Anagrelide but found most of the same 'side effects' listed so concluded it is indeed MPN and to the medications - either way we just have to count our blessings and greet each day with relief that we didn't wake up dead!!!

[russkatt]

I do not understand why our doctors like to jump from 45mcgs to 90mcgs after 4 weeks? I counts are doing well on 45mcgs yet he wants me to double my dose. Well I am not going to do it. If my counts start going up I will split the difference and go to 65mcgs. I just want the lowest effective dose possible. BTW, I have had itchy skin on 45mcgs.

[Franko21 in reply to russkatt]

No I don’t understand either I think I’ll bring it down to 65 mcg . It makes you wonder if it is the disease or the medication that makes us itchy as you have it on 45 mcg . Did you have itchy skin before starting medication ?

[russkatt in reply to Franko21]

I have wondered the same thing, but I never had itchy skin when I was on Hydrea, only since I started Pegasys. It is not all the time or after showers. Sometimes just at night when I am trying to sleep. It's not too bad just annoying.

[Cityreach]

I do sympathise with you as I am a itcher too mostly after showers sometimes just randomly not water related too, I take fexofenadine twice daily and I use Dermacool 5% moisturiser recommended by CCN nurse which does give a tingle to skin but distracts the itching, ice pack's help to stop you scratching I bought a face gel roller keep it in freezer and roll up and down legs or arms whatever is itching good gadget to keep in freezer I too am due to start Peg next month and thus is a concern that itching will increase, this is how I found out had PV the itching after showering, good luck Hope something works for you aa itch is awful

[Franko21 in reply to Cityreach]

thank you you have given me a few tips there I’ll try them all , also going to try BA when I find a good source.

[Wyebird]

so sorry you are experiencing this.

I’m on interferon I’ve had no itching.

[william-Indo]

You may use Beta allanine or zyrtex (Ceritrizine)Both are working very well.

Cheers

[MAP44]

Hi Franko21

I am also an itcher. 54 PV Jak2

I am on pegasys and had the itch before starting the treatment but it increased greatly over time with treatment. It comes like a wave starting on an ankle and slowly or fast runs up the body or on a shoulder and runs down. Changing clothes while shopping has made me cry in frustration and sheer exhaustion.

I do several things but I think time has done the most.

I take Querciten 2x a day and nettle teas and drops (they are both health store antihistamine). Over the counter antihistamine did nothing.

I drink extra water especially upon waking. Top loading the water help keep the blood flowing and thinner.

I use lotions and oils on my skin often through out the day. I avoid certain clothes and textures because of the possibility of itch. Soft bedding is must. I have many soft, smooth blankets I travel with. I have also wore leggings all day and slept in them because then I would not touch the bedding and have any issues.

When itchy at night I have a small light heating blanket I use all year round. It gets you back to sleep in no time and the rest you need. Something about laying flat and the blood flow.

If you have some time distraction works very well also. Take the crazy legs outside for a walk, or watch a movie or play a song you love and dance. Sounds crazy but it a pinch it all works. Mind over matter.

My itch has lightened 2000 percent from the start to just an annoying occurrence. I still do not shower and do prefer a quick bath of hot water a few time a week to the dreaded shower.

Good luck finding you personal solutions and please share them as they might be successful for others also. 🍻😎

[Franko21 in reply to MAP44]

thank you I never ever thought I would find someone that would understand the changing of clothes in the changing rooms what a relief just hearing a similar story ( thanks so much for sharing that gem ) . I’m glad you have found your personal way of coping. The blanket I will try . I’m almost at the stage of giving up showers but it’s just as bad when I wash . I am going to try the beta alanine I’ll let you know if I find a cure or at best some relief. Slapping the itch is better than scratching but I look mighty funny when it’s my inner thighs lol .

[MAP44 in reply to Franko21]

I take a super hot bath and moisturize after. Only twice a week, cannot handle more. Not really itchy after it, so not a problem.

Keep up on the water, I think that helps so much. 🍻

[Yvette49]

hi Franco, yes I am on interferon and also itch really badly after shower/bath, and like you even my bed sheet can feel like sandpaper at times :-(. I have been experimenting, after a bath, I drink as much cold water as I can ( usually takes about 15 mins) and it seems to be helping that it doesn’t last as long. Some people have said use moisturiser creams, but I find just the process of putting it on starts the itching….Hope you can find some relief.

[JackLina]

Yes, i did suffer excruciating itching. I couldn't tolerate showers and felt as tough I was having sharp needles. Bathing was also painful due to the itching, which was relentless. I still use Oilatum in the bath, which eases it somewhat, however, after a long time the itching subsided until it is now almost negligible. Antihistamines did little to ease the situation but did help a little

[Franko21 in reply to JackLina]

that’s positive news that it can subside after a time . Glad yours is better .

[quanglewangle]

Having read more of the replies to this thread citing itching connected to showering I will be very interested to learn whether you (or others that joined in) try out stopping putting chemicals (shampoo, conditioner, soap, moisturisers, deodorants, perfumes, aftershave, on the body (see my two penn'orth above). It certainly works for me - or am I the exception?

And think how much money all that lot costs - money that could be used to give yourself a comforting treat!!