Pruritis

[caroline_284]

I have had MF for about 5 years and on peginterferon. My itching/tingling was only bad before when I had a bath.but the last few weeks it can be anytime and if in bed at nighttime,it is troublesome making my sleeping even more difficult than I already had.i wondered if the warmer weather,and the extra stress of a difficult house move have exacerbated it.any suggestions and remedies would be gratefully received.

[Cat1001954]

I feel for you my itching is through the roof I think it’s the heat

[caroline_284 in reply to Cat1001954]

It always helps if you know someone else with it. Do you have any remedies?

[Cat1001954]

hi I take antihistamines but don’t help with our itching but when it’s really bad I just get a cold flannel and rub the itchy area it really helps the cold water on flannel also a bit of aloe Vera gel after

[caroline_284 in reply to Cat1001954]

Thank you,I will try that.

[hunter5582]

Pruritis can be triggered by any temperature change. There can be other triggers including environmental, stress, and more. Pegasys and Besremi have been a trigger for itching for me. While not common, the interferons can trigger a mast cell response, releasing histamine and triggering itching. I found that cetirizine (Zyrtec) is the most effective antihistamine. It works better than diphenhydramine (Benadryl).

There can be other triggers, including perfumed/dyed laundry products and scented body cleansers. I use only scent/dye free products. I also maintain a healthy skin moisture barrier with a ceramide cream to prevent eczema outbreaks.

Wishing you success moving forward.

[caroline_284 in reply to hunter5582]

Thank you for that,I did wonder about added stress as well.

[hunter5582 in reply to caroline_284]

Skin, the largest organ, is the most common location for stress related symptoms to manifest. Stress could certainly be a contributor.

[caroline_284 in reply to hunter5582]

Thank you.its a difficult thing to control unfortunately. I've tried many things.

[hunter5582 in reply to caroline_284]

Sometimes you just have to keep trying until you find what works. Note that while I have never tried it, some have had success with Beta Alanine. Others have reported success with ketotifen.

If you wish to pursue complementary health interventions, it is best to consult a knowledgeable medical provider. Integrative or Functional medicine docs are the most likely to have this expertise.

All the best.

[caroline_284 in reply to hunter5582]

Thank you for that. It's the stress side of it that I find difficult to control. All of you have offered so much help with the alleviation of the itching I have plenty to try out,so I am sure some of that will help.I have also tried all sorts to help with the stress it's just that sometimes I find it overwhelming. And I'm sure that many people have the same problem .

[caroline_284 in reply to caroline_284]

Also finding so much support here is very heartening.

[Cityreach]

Hi CarolineI use a gel roller, it's a gel face roller really, I keep roller bit in freezer and when needed attach to handle I just keep rolling over itchy bits till itch subsides, bought from amazon about £10, I saw it on TV being used for the face and thought would be ideal for itching

Worth a try hope you find something that helps

[caroline_284 in reply to Cityreach]

That's a good idea thankyou. The cold does seem to help.

[originalmyndzi in reply to Cityreach]

Good idea!! Beats the bag of frozen peas that is my last resort

[IKEALover]

Hey there, sorry about the itching. I know it’s horrible and intrusive. Best I’ve found is using a hair dryer on warm or hot and pointing the hot air at the itchy parts of my skin. It’s amazing. It sucks the itch out. Feels so good such relief it feels like you’re scratching it.

[caroline_284 in reply to IKEALover]

That's so odd,you would think only cold would help.thankyou

[Chicagopv]

Benadryl, Atarax (requires a prescription in the US), for the itch as it occurs. For long term—Jakafi, if you can afford it. Also light therapy. Good luck!

[caroline_284 in reply to Chicagopv]

Thank you. I wondered about sunlight because I was told years ago it was good for psoriasis.

[Mortysdad]

I have had good results with any lotion or skin cream that has Colloidal Oatmeal. The one I use has 2% C.O. Wishing you all the best as this can be brutal. Blessings all.

[caroline_284 in reply to Mortysdad]

Thankyou. I can ask the pharmacist,or healthfood store.

[21Rosie]

hi Caroline, Understand completely how awful this itching can be. My haematologist suggested I try Beta Alinine . This has been a lifesaver for me. It is an amino acid powder ,totally tasteless taken in water . I take it about 20 mins prior to showering or if the humidity is too high then also. About 1/2 teaspoon dissolved in a small amount of water. I buy it from my pharmacy in the sports section.

Many people have great success with this remedy and here in Australia it is being mentioned repeatedly on MPN forums.

Hope this gives you relief.

Cheers Rosie

[caroline_284 in reply to 21Rosie]

Thank you. I willask about that too.

[Franko21]

I too take Beta Alinine for itching been a life saver for me . I take it before I shower but I know people on here take it everyday in very small quantities if they have continuing itching not just at shower time or trying on clothes. Hope you find a solution . I might try the hair dryer tip mentioned above .

[SoledadBarcelona]

Sorry for that. I use black cumin, or called Nigella Sativa on the skin or eating it with oral antihistaminics, sometimes. BUT, the most important is your diet, your exercise, your stress, your microbiote, etc general speaking, lifestyle. Taking care of it is important. Good luck!

[caroline_284 in reply to SoledadBarcelona]

The trouble is I am at my most unhealthy at moment,no walking,fairly rubbishy diet.we had a very difficult house move and have had weeks and weeks of cleaning,throwing away etc ,which has not helped my blood pressure either.its going to take some getting back to more normalcy.but thankyou.

[DarcyShepp]

Hi Caroline, I feel your pain. Mine is definitely worse in the warmer weather. I am usually the same in that it only happened after being exposed to water but in the summer months I could just change my clothes and I start to itch.

I take an antihistamine before showering, sleep with a large fan beside my bed so I can snuggle down into the covers, the trick seems to keep very cool.

Lately I’ve noticed that mine is worse when I drink coffee and definitely if I get stressed.

My hematologist said this is common with mpn’s.

I hope you manage to get it under control xx

[caroline_284 in reply to DarcyShepp]

Thank you.thats sounds familiar.

[Strumin210]

I use lotion with dead sea minerals in it. Has pretty much gotten rid of any itching I had and I live in a sub- tropical climate ( lower Alabama). Hope that helps.

[caroline_284 in reply to Strumin210]

I was told that also for.psoriasis.thats interesting thankyou.

[ainslie]

itching is horrible , you have my sympathy, I itched for about 10 years prior to Rux, I used UVB phototherapy for many years and that works very well for most, I hear beta alanine is also good, interferons can cause itch for some

[caroline_284 in reply to ainslie]

It's strange I mentioned it to the consultant a long time ago but she wouldn't hear of peginterferon causing itching.thankyou,but I didn't have it all the years before I started it,but she just said it was my MF.

[ainslie in reply to caroline_284]

I’m a bit concerned about your consultant, Peg causing itching is fairly common

[caroline_284 in reply to ainslie]

Yes it does seem to affect a number of people. She does seem to put most things down to MF.

[Pogm]

If you can work with your hematologist and ask for the addition of Jakafi at 5mg(2x daily) it will surely reduce, if not eliminate, the itching entirely. I am on an interferon(Besremi) and tried many remedies before requesting Jakafi. It has been the only thing that has worked for me. I do have CBC and CMP checks every 2wks which may be necessary if you're not already following that regimen. Good luck!! Itching was my main complaint and I have finally found relief!

[caroline_284 in reply to Pogm]

I was trying to not make too much fuss about it,because I was worried about being put on yet more medication.

[Luthorville]

one more vote for cetirizine (Zyrtec) . I take it daily and it reduces itching by over 95% for me be almost unbearable. Buy the generic id you are US based from target .

[caroline_284 in reply to Luthorville]

Thank you.

[Solebury]

Hi Caroline, sorry to hear about your itching, I know it can be agony. I had ET for about 12 yrs but when if morphed into PV my doctor started me on peginterfon after having issues with longtime use of hydrea. The it itching was terrible. A few months ago my doctor put me on Jakafi/Ruxalitnib. My bloods numbers were improving so we cut back on the interferon and that I believe has stopped approximately 75-80% of my itching. It was a life changer.

I wish you well and hope you’re able to find some relief.

Steve

[caroline_284 in reply to Solebury]

Thank you.it does make sense.just anxious about trying another medication. Because apart from the itching peginterferon has seemed to be OK.

[caroline_284 in reply to Solebury]

Thank you,its good to hear positive things about ruxolitinib,as you can see I'm nervous about changing anything.And thank you all for being so helpful and supportive.

[Nerjalover in reply to Solebury]

hi I am interested in what has happened to you as I believe I am following your course. I am 5 months into PV after 27 years of ET. The hydra tabs stopped working in 2019 and so I was put on Peg interferon. I have really dreadful bone pain - and extreme lethargy and fatigue. I am or was a very ‘get up and go’ sort of person but now I’m tired most of the time. My oncologist has offered me Rux but has also advised my bloods are reasonably good on Peg Int - he also advised of the risk of skin cancer and other types of cancer on Rux and also weight gain- have you had any of these?

[Solebury]

Since starting on the ruxalitnib and reducing the peginterferon my blood numbers keep getting better and the itch reduction has been wonderful! Hopefully it lasts. Also I haven’t noticed any real side effects from taking the new medication.

[caroline_284 in reply to Solebury]

Thank you. I'm glad it's working well for you.it may well be after I've tried all other options i shall have to suggest it to my specialist

[MrDeanC]

I’m sorry to hear that. Itching was my main symptom before diagnosis for MF, and was unbearable at times. Usually, it came after showers and lasted for an hour or two. Exercise was the only relief for it.

I know we are all different, but I was put on Ruxolitinib and the symptoms disappeared within a few weeks and have not returned to date. This has been over 5 years now and has certainly made a difference to my quality of life.

Different treatment may help so a conversation with your consultant would be needed.

All the best and I wish you well!

[caroline_284 in reply to MrDeanC]

Thank you for your reply.Im sure you are right about the exercise bit too. I have lost my dog quite recently and so have lost the motivation for my daily walk.I will have to make sure I start that again,I know it generally makes me and I'm sure people generally a lot better.

[ainslie in reply to caroline_284]

I forgot to say that exercise , and more puffy the better can help the itch

[caroline_284 in reply to ainslie]

I presume walking quickly is better than strolling then.

[ainslie in reply to caroline_284]

yes🙂

[Ovidess in reply to caroline_284]

So sorry about your dog. Grief makes it all worse.

[caroline_284 in reply to Ovidess]

Yes,it hit me much harder than I imagined.

[john0084]

Hi, I have pv and take hydroxy. I've been itching for years but what has been a real revelation is after showering to stand in front of a fan on full power, I don't rub my skin with a towel and the itching is a lot better.

[caroline_284 in reply to john0084]

Thank you.yes any rubbing does make it worse.