Itching with PV

[Yvette49]

I usually getting bad itching after a shower etc, but this morning it started “for no reason”? And went on longer than usual,. Does anyone know What actually causes “the itch” with PV ?

💞

[ConniesDad]

Hi Yvette. Sorry you are having these new symptoms.

My understanding is that the itching is due to the release of histamine in your body resulting from increased levels of cytokines which in turn is due to increased inflammation; sort of an allergy reaction.

I suggest you speak to your haematology team if this is a new and sustained symptom

Hope you manage to get some relief and also some support from the medics.

All the best

Garry

[Yvette49 in reply to ConniesDad]

Thanks Gary, I have had the itching for a while, I am taking an antihistamine tab too. It was just soo bad this morning :-(. I have telephone consultation with haematologist this p.m. I’ll run it past him 😊. Thanks for the info Gary.

[Pte82 in reply to Yvette49]

Sorry Yvett49, I didn't complete my response. Inn addition to Liposomal vitamin C, Liposomal curcumin - 5 ml three times a day take it with the vitamin C, Astaxathin - 12 mg twice a day, plus the flavonoids quercetin, fisetin, kaempferol, hesperetin and apigenin. I encourage you to learn about liposomal delivery and making supplements yourself. The flavonoids generally have low absorption and this is where learning about making them liposomal will pay dividends. Also research senescent cells as it relates to PV and how each of the flavonoids affects them and PV.

[Yvette49 in reply to Pte82]

Ooh, interesting.....I used to have Curcumin but it played around with my blood results, so had to stop ☹️

Will read up about the flavonoids 👍

[Pte82]

My wife uses 15 ml Liposomal vitamin C three times a day

[Ginny70]

This happened to me also. My experience was once it started coming on without the trigger of a shower. It only got worse and was so awful . Antihistamines didnt touch mine i had to get steriods and then started on hydroxy. Hope you get it sorted soon and yes definitely tell the consultant xx

[Yvette49 in reply to Ginny70]

You are right there, Ginny. It’s dreadful. I have been fine all this morning, went out, just got back home, and it’s starting to prickle again 🥴😩 hope it doesn’t take ahold.

I am on antihistamines, as you say they don’t really work.....I used to be on Hydroxycarbomide, but it gave me mouth sores.. 🙄 now on interferon.

Consultant chat yesterday, said it was probably flaring up because of humidity......not sure it’s that humid today.

Xx

[hunter5582]

You already heard the explanation for the itch as well as suggestions re. anti-inflammatory and flavinoid intervention. I would add one more from my dermatologist who prescribed Eucrisa (Crisaborole) for eczema for me. She did say it would work for pruritis too (I asked). It works great for the eczema so expect it would be effective for pruritis as well.

[Aime]

Hi Yvette, I find loads of moisturiser (Olay and Aveeno) work for me. Hope that helps. Aime x😻

[Yvette49]

Thanks Aime, will give that a shot 😊

[john0084]

I have pv diagnosed 2 years ago but have itched for at least 10. My itch is much more toralable now my bloods are under control. I'm on hydroxycarbamide. I'm interested in the advice you've been given about creams but find it impractical to use. My upper torso arms and legs itch so putting the cream on and letting it dry before dressing is too much for me.

[Yvette49 in reply to john0084]

Hi john, same here, I was diagnosed with PV about 5 years ago, but have itched at least 10 years before. My itch is the same area as yours, funny it’s never on neck and face.

[JP1952]

Hi John, Yvette, and all fellow itch sufferers. The descriptions of your itching sound so much like my experience. However, I have ET which was discovered from blood tests done by the dermatology clinic trying to find the cause of my pruritus. My haematologist said that the itching wasn't down to ET because I had the itching for 2 years before my platelets went up, and he therefore doesn't give any advice for it. The dermatology clinic have prescribed numerous creams but like John it is hell to apply them, they just start the burning, tingling, unbearable itch again. I have now had it for about 5 years and it rules my life.

Here's the definites.

It is started by a shower or bath, worsens if I try to use a hair dryer, or apply moisturizer. It starts when I get out of bed by change of temperature and whenever I change my clothes. It often starts when I put my hands in water to wash up or just was my hands. It helps if the water is warm to hot. Also tepid showers don't work, it is best if the temperature is moderately hot. When I do manage to apply moisturizer on my legs it's easier if my hands are warm. I can stop it by jogging or a brisk walk but it often kicks off again when I re enter the house. It is exhausting, and for me the worst thing about ET, because unlike my haematologist I am convinced it is a symptom of MPN. Again like you all my face is not affected.

I am thinking of trying cannabis oil. Has anybody else tried it.

Sorry to have gone on so long about it.

[Yvette49 in reply to JP1952]

Hi JP, .....you are not “ going on “

yes your definite are mine, exactly, it get so frustrating and unbearable. I was beginning to think I had a fly/bug in the house that was causing it....

I had the CBD oil for back pain relief, which it didn’t touch it, but that’s a thought I wonder if it May help with this. Let me know how you get on if you do try, I think I still have some,...will also try.

[Shayna2111 in reply to JP1952]

I too have ET and get dreadfully itchy arms. I find it far far worse during summer when mums are exposed. The sunlight exacerbates it. Really high factor sunscreen with zinc helps if applied before the sun damages but hindsight is a brilliant thing!! Aloe vera moisturiser or lotion really helps to calm and soothe. And VitaminE serum overnight seems to sooth and repair the scratches. Both these I get from Body Shop.

[Yvette49 in reply to Shayna2111]

Thanks Shauna, will give Aloe Vera a go 👍😊

[Kiki64 in reply to JP1952]

Hi

I have ET JAK2 . Everything you have described about the pruritus i can relate to . I too was itching along time before my platelet count went up. It’s also starts when I change my clothes. It’s true it is exhausting. I also have burning hands and feet . I haven’t used cannabis oil. I’m hoping if I start Hydroxy it will help with these unbearable symptoms. My haematologist has told me this will be my first line of treatment .

Best wishes to you ! Hope you get some relief from these symptoms

Kiki64

[Yvette49 in reply to Kiki64]

Thanks Kiki,

I can get up, and by the time I am dressed etc, and downstairs, the itching is kicking in. This morning wasn’t so bad, just on my arms and only slightly.

Best wishes to you, and good luck with Hydroxycarbomide, it worked well for me 😊

Yvette

[Kiki64 in reply to Yvette49]

Hi Yvette.

It’s exactly the same for me . My platelets have gone up and so as the itching .

Best wishes

Kiki64

[Yvette49 in reply to Kiki64]

It’s all so weird, my bloods were ok at last weeks Appointment she said. I was really expecting she was going to say they were playing up because of the itching 🤔

[JP1952 in reply to Yvette49]

My platelets are coming down but the itch is as bad as ever. Should the itching stop if the platelets reach a normal level? Does anybody know ?

[Yvette49 in reply to JP1952]

I’m not sure, but like you...keep hoping 😊

[dognut]

Hi Yvette. Sorry you are suffering with the itching. Could I ask if you have a rash at all? I have had small rashes and sores continuously for 3years. I was told the itching and rashes were not related to my ET. I am convinced that they are or possibly the HU. I was referred to dermatology who told me it was eczema and that I needed to moisturise. I was also prescribed fexafenadine which is really effective. The creams burned and we're no use at all. I have just been trying anything else I can find and the rashes have improved but the itching is relentless. The fexafenadine holds it off until it's effective time is over then I'm back to square one. I take a cimetadine to help me sleep. I just wondered if anyone else had rashes or sores.

[Yvette49 in reply to dognut]

Ooh, yours sounds bad dognut.....I get red rash...sometimes, at the tops of my legs, when in full stream of itching ( prickling) it’s horrendous isn’t it ☹️

[BlushNoisette]

Hi Yvette49,

I'm so sorry that you are having a bad time with PV. It seems that we don't all experience exactly the same symptoms, or to the same degree.

I have PV and was diagnosed in 2006. I did not experience pruritus at first but it started a couple of years later and it was excruciatingly painful.

I tried all the advice available. UVB phototherapy worked best for me and I used to go for treatment twice/week at my local dermatology department. Doses start very low, ie; 15 seconds and then increased gradually to about 5 mins each time. UVB does calm the pruritus down but does not cure it. Some people find sunbathing helps but be careful with that to avoid over exposure.

Like you, I tried various antihistamines and they did not help at all. An oil based skin moisturiser is helpful to keep the skin from drying out. I avoided water based skin creams and moisturisers 'cos they actually caused itching as the moisture evaporated and cooled the skin surface.

I would advise you to wear clothes made of soft natural fibres, cotton is good. I found that long sleeves were best as they kept the air off my skin and yet the skin can breath. Sweating can be a problem as when sweat dries the skin surface cools and that would set me off.

Eventually, I gave up trying to bath or shower and managed my personal care a bit at time on separate days. Washing my face and hair was never a problem but washing the rest of me was horrible. This strategy is not ideal but if your are experiencing severe stinging, pricking and burning with the itch, then it may be your best option. I did not have a problem with BO as I changed my clothes daily and washed the high risk areas frequently.

All of this went away when I was prescribed Ruxolitinib. It maintains my blood perfectly and the pruritus went away completely. Phew!!!

JP1952 explained the cause of pruritus .... it is an over reactive inflamatory response caused by cytokines. The Ruxolitinib inhibits the expression of the JAK2 genetic mutation which is responsible for the PV and so it is excellent at controlling all the symptoms. Plus ..... quality of life is hugely improved.

I was treated with venesections and aspirin for 10 years before being accepted onto the Majic Study which enabled me to have the Ruxolitinib. NICE are gradually relaxing the criteria for patients to be prescribed Rux under the NHS, so if you are really struggling badly with fatigue and pruritus, your haematologist might be able to get it for you on compassionate grounds.

Don't be shy about asking for what you need. The attitude of different practitioners varies a lot and some dismiss symptoms that better informed haematologists know are part of PV. If you live in the UK, then Prof Claire Harrison and Prof Adam Mead are tops!!! Claire is based in London and Adam is based in Oxford.

Check out the mpnvoice website and tune in to their webinars.

Post Covid19, try to go to their regional forums and patient days. They are a great source of reliable information and can keep you up to date with the latest science and treatments.

Wishing you all the best. Don't give up and be prepared to fight for what you need.

Best wishes and stay safe, Lyn

[Yvette49 in reply to BlushNoisette]

Thanks Lynn for your message, and tips, I will certainly give it all some deep thought. Like you I try not to have showers etc, but wash all my “bits” separately.

Ruxolitinib Sounds interesting, I will run it past my haematologist next time.

Thanks again,

Yvette

[BlushNoisette in reply to Yvette49]

Hi Yvette,

Don't forget that there is an MPN online forum on Sat morning. If you can watch, it should be worth doing. Claire Harrison and Adam Mead will be participating and you can submit questions. To register, go to mpnvoice website and look for the item and then go from there. Best wishes.

[JP1952 in reply to BlushNoisette]

Thank you Lyn for your input. I never thought about the type of moisturizer I use but it makes perfect sense to use an oil based one.

Like Yvette I am going to mention Ruxolitinib to my haematologist and if he once again states the itch is not caused by my condition I shall ask to see an ET specialist, although I don't know how difficult that will be at this present time. It would be wonderful if the itch could disappear rather than be managed.

Thank you all.

[BlushNoisette in reply to JP1952]

Hi,

Yes I can understand why you'd say that but the nature of the MPN beast is that at the present it can't be cured ...... only managed. So, getting the best management regime for your individual needs is really important 'cos reclaiming/maintaining a reasonable quality of life is the name of the game ...... I think.

So, its worth trying to see another haematologist if you don't have much confidence in the person you've seen so far. From what I've heard other patients say at forums etc, it does seem that there are quite a few professionals out there who think managing MPNs is all about the numbers from blood tests. So, they will say stuff like, well your bloods are all within normal range, so you're fine. And they completely ignore all the other sympoms and what's worse, don't want to hear about them. Managing these conditions is much more than managing the blood count numbers. And if that's a haematologist's attitude then they don't know much about MPNs. Many haematologists will be tops at other conditions but don't see many MPN patients and so haven't bothered to get acquainted with the most recent advances.

At the MPNVoice Patient Day which was held in London in Nov 2019, one of the main themes was the importance of improving patients' quality of life. So, now there is a real emphasis on paying attention to the physical and mental symptoms like fatigue, pruritus, joint and muscle pain, depression, etc, etc. These are not trivial things to be trying to cope with. Back in 2015, my quality of life was so poor; I had fatigue so badly that I could hardly climb the stairs. I had repeated episodes of cellutitis in my ankles, swollen joints, and very bad pruritus. I really thought that I would be shaking hands with the "Grim Reaper" any day. Being accepted onto the Majic Study and discovering that I would be in the Ruxolitinib patient treatment group changed all that. Once I began treatment, I began to feel some improvement within 4 or 5 days. It was like magic! And as time went on I got better and better.

5 years on since I began treatment with Rux, I have some fatigue and I have to pace myself but all the other symptoms have gone away and I have my life back. So, its worth going after better care because it is available. Take a look on the mpnvoice website to see if they still have any of the videos, newsletters etc which report the forums and patient day events. If they're still there, then take a look. Prof Ruben Mesa also puts a lot of info on the Mayo website. There's so much good information available online if you look in the right places.

Best wishes, Lyn

[JP1952]

Thank you. That gives me a lot to think about. I think I have already read the summary of that forum and visited the Mayo website. I suspect my problem will be not be getting the information but getting the help.

I rang the surgery this morning to request an appointment with my GP to discuss these issues but couldn't get passed the receptionist who thought I should talk to the pharmacist about changing the moisturizer I use. A little frustrating but I'm going to get an oil based lotion and he's prescribed anti histamine so I guess it's a start.

You have all been so supportive on this site, it really is a tremendous help.

[BlushNoisette in reply to JP1952]

That's great and I do hope that you get some sensible responses and the help that you need.

I went onto the mpnvoice website at lunchtime today and noticed that there is a forum on Sat morning so that is 10am start thro' until lunchtime. So, if you are interested take a look at the website and get yourself registered. Claire Harrison and Adam Mead are participating and you can submit questions. Best wishes.

[JP1952 in reply to BlushNoisette]

Thanks I have registered.