PV itch

[Yvette49]

Hi, sorry to keep going on about it, but has anyone used Aloe Vera for “the itch” and does it help ? A friend has recommended it may help 🤔

Thanks 💞

[hunter5582]

I have used aloe vera for other things, particularly burns. It does help for that. It would be worth trying.

I am treating eczema with Eucrisa, which would also work to treat pruritis. What really helps me is to prevent the flairs. I do this by maintaining a healthy moisture barrier. I use a ceramide-based cream twice a day to do this. I also use a ceramide-based cleanser rather than soap to bath. It has reduced eczema flairs by 95%. I also avoid things I know are irritants to my skin. I only use non perfume/dye laundry detergent/fabric softener.

I would think that with the pruritis prevention is better than treatment. It has certainly proven true for the eczema. I expect you already know that ruxolitinib is the better choice for controlling this symptom than hydroxyurea. Not sure if that is relevant for you, but it is worth knowing.

Hope you get relief soon.

[Yvette49 in reply to hunter5582]

Thanks Hunter 😊👍

[Mazcd Partner MPNVoice]

Hi Yvette, no need to apologize. I hope it works for you, let us know. Best wishes, Maz

[Yvette49 in reply to Mazcd]

Thanks Maz

[Hidden]

Hi Yvette49... you don’t say here how bad your “itch” is ... I’ve posted in this site and mentioned that my PV itch is NOT an itch ...., it is more like intense pinching; stinging; sometimes burning ... if you just touch it ... it gets 100 times worse. Sometimes I’ll get it all over my body at the sam time or sometimes it’s arms and legs. Legs are even worse if possible. I have tried meds and phototherapy (phototherapy helps just for a bit). Creams are impossible because just the act of spreading the cream on sets off the hell and if I do get the cream on it does nothing. I can’t take a full shower anymore ... I tried cool water; lukewarm water; hot water .... that didn’t help even having taken Benadryl an hour before the shower. Taking a full shower will send me off into A DAY of screaming crying shaking and rocking back and forth!!! My showers consist of 2 days of quick spot washing and then getting dressed is a slow process and screaming and crying for about half an hour afterwards. It really does effect quality of life. My hematologist does NOT guarantee that any of the PV medications would work so he doesn’t want to put me on something (unless I force it) unless absolutely necessary in regard to my lab numbers. It’s very hard to get through the days with this .., it prevents you from doing or enjoying a lot of things in life that we take for granted. How bad is your “itching”?

[Yvette49 in reply to Hidden]

Hi Keiks,

I think I am not as bad as yours....bad enough by the tim I am washed and dressed and down stairs, legs are starting to.....prickle ( as you say it’s not an itch) arms, and chest....it all usually lasts about an hour, of trying not to scratch, rocking like yourself,, and generally all but screaming. Lately ( this past 3 days) it’s just a little everywhere...all day.

As you say, putting moisturiser on, doesn’t help, it seems to make it all happen. I am going to try an after sun cream...or/and aloe Vera. I am on interferon injection, have been on HU but got mouth sores with that.

I wonder if hypnotherapy or acupuncture would help....

Hope you get some relief soon.....

[lebowski42 in reply to Hidden]

Itching has gone to epic proportions thanks to it being 93 degrees and 70 at night. Maybe I should move to Antarctica? We can start a community, lol. The one and only thing that helps it is wrapping ice packs around my legs and it seems to go away after 30 min to an hour. I feel it's getting way worse though and harder to deal with. I can't take a shower to cool off anymore do to the risk of itch.

[Yvette49 in reply to lebowski42]

Yeh same here...it’s been a scorcher today here, and I will not rush a shower ☹️

Sounds a good idea Lebowski, see you there 👍 let me know when 😁

[Hidden in reply to lebowski42]

That is exactly my life ... incredible how we took taking a shower for granted ... now I mourn it. As I said in my previous post ... My shower is in parts over 2 day period !! It’s just awful. It feels like I don’t think even Antarctica would work.. LOL !! But seriously, something has to come up as a treatment for this type of “itching/pinching/stinging/burning” . Sometimes this itching happens because of problems with organs and you take care of that problem but with PV you can’t get rid of PV then the itch goes away!!!!! So I wonder if this is a lifetime symptom ... my hematologist can’t tell me if it’s ever going to go away so are we stuck with this? It’s an awful thing that makes me think that no human being can sustain this. Not only are we possibly dying a slowwwwww death but we have to be tortured for the duration too !!!! Sorry if I sound like a little Debbie Downer but honestly sometimes I’m just so overwhelmed with this “itching”.

[lebowski42]

I'm about to go right now. It's only 73 and my body is hotter than ever and itching like mad. I honestly don't know how I'm going to get through this day.

[Yvette49]

Know how your feeling ☹️ It’s 74 here, cooling off a bit, and trying to rain.

Don’t ask why, but I am not itching 😳 ?

Get the ice packs in the freezer 😁👍

[ja66ck]

PV Reporter has a laundry list of potential solutions. Here's the link. pvreporter.com/strategies-t...

Recently, when my itching (or whatever it's called) became unbearable, I used Zyrtec and Pepcid AC to get it under control. In addition, I applied Benadryl to my arms. I did this combo for a week. I figured out that the biggest culprit for my itching was chocolate candy. I believe my medication had caused me to have a heavy craving for sweets. I've since been focus on eating fruit to satisfy my cravings. I can't recall anything in my life that's been as traumatic as taking a shower. Successfully taking one with little itching just perks up my spirit for the rest of the day.

[Yvette49]

Hi all...just an update on the “itch” I got desperate for a bath tonight 🥴 and took a chance,...water was warm rather than hot, and I put in Fenjal Bath oil, And just dabbed dry, I am pleased to say, I only had a tiny bit of itching on my body and arms....my legs were itch free 😁 not sure if it was the result Of One thing or everything, but But I am sooo pleased.

💞🌸

[katiewalsh]

Hi Yvette, that’s great news. Btw, I just read about your problems with mouth sores while on Hydroxyurea. If you ever end up wanting or needing to go back on it let me know, I have some suggestions which might eliminate the mouth sores. Just private message me. Best of luck to you. Katie

[Yvette49 in reply to katiewalsh]

Aah thanks Katie 💞

[Blatherwick-lite]

Hi, jak2/ET here. No itching related to my diagnosis but have had allergies and skin itching my whole life. Thing that work for me: calomine lotion (marginally effective). Cool bath with Epsom salt (about two cups), soothing my skin with almond or vit e oils, topical cortisone cream, (does not take the itch away but does deal with a rash; always have a tube on hand just don’t use it all the time and not on the face), then I stay away from anti-histamines because built up a tolerance as a child, but it is gets very bad I’ll take a double dose of phenegan and try and sleep it off. These are just my remedies I’ve built up over the years, last thing to mention is prevent your skin from getting too dry, all my soaps are moisturising (I immediately start a full body itch after using normal soap) and have body oils at hand (find oils do a much better job than just creams). Anyhow hope some if any of this is useful

[BlushNoisette]

Hi Yvette, it's mid June 2021 now and I've just come across your post. If you are able to be prescribed Ruxolitinib then that should definitely help so many aspects of PV.

Like you, I had the "itch" so badly before getting on to Rux and now I'm so much better, it gave me back my life.

Before Rux, I wasn't able to bath or shower for 5 years and so I really get what you're going through. Phototherapy .... UVB does help while you're on the treatment but as soon as treatment program ends then the stinging and burning just return as bad as ever.

I found that using oil based skin lotions helped me. A lot are water based and they make things worse. If you try showering use a shower oil instead of the usual shower gels, and very soft cotton towels to dry. Otherwise wear soft cotton against your skin and keep the air off it. Also, try to keep your skin temp even, so avoid sudden temp changes and draughts. Be very gentle with yourself. What you're having to cope with is real and not in your head, so never let anyone tell you your off your head or just making it up.

PV seems to cause excess cytokines to be released into the blood stream and these pesky proteins can cause severe inflammation and pain. People used to ask me about my skin and I'd say it's not my skin ,it's my blood that's the bl....y problem.

Hang in there and don't be afraid to fight for the help that you need. It's amazing how many GPs and haematologists know so very little about MPNs and so can be very unhelpful and unkind. If you need to change practitioner then contact Maz for suggestions closest to where you live.

I hope this helps a bit. These blood cancers cause some horrible symptoms but you are not alone.

Take care, best wishes, Lyn