Does anyone experience rashes and are they associated with ET?
I periodically get a red rash on my neck it's itchy and sore and feels a bit like prickaliy heat. I showed my hemotologist a photo of the rash he didn't think it was associated with ET? It just appears and I don't understand why? It can last a week or two and then it just goes??
It's probably not associated with ET but just thought I'd ask.
Hi Camelian. First a very Happy Christmas to you, Now,you are not alone in having a rash on and around your neck. Only difference is I have PV not ET. It is not an overtly red rash more like it has a viel over my neck , BUT itch it does, I have it a few weeks then it disappears for a while. Half the doctors don't really understand the individual itches , rashes, spots , my dermatologist gave me some ointment then told me to wrap the affected part in cling film, ( not good for the neck) lol. But it worked for my arms and feet. Our Haemotologist's must work more on this problem as it is mind blowing when you are constantly scratching in and out of public view. Hope you find a cure ,best wishes June.
Hi,
I’ve reported itchy skin to my consultant and they said it was probably the peg Interferon injections.
No rash on my neck but generally have itchy areas of skin, especially after showering.
It’s not horrendous so I just put up with it. Very annoying though.
I guess there’s tons of potential reasons for neck rashes and, as we all know, our consultants are sometimes quick to say that a whole range of symptoms we experience are not linked to our illnesses.
All the best, Mark
Thanks for the replies. I agree the rash could be due to a host of reasons. I'm only taking aspirin at the moment and I don't think it's related to them.
I just thought it might be an indication the platelets were high?? I'll mentioned it again to the hemotologist when I next see him.
Merry Christmas and Thanks for replying.
I also get a neck rash periodically as well as rashes on other specific areas. Diagnosis is actually eczema (aka atopic dermatitis). I do believe it is related to the JAK2 mutation as this is known to increase the body's production of inflammatory cytokines. These cytokines are thought to be responsible for many of the secondary symptoms people with the JAK2 mutation experience. This is emerging research and not as well understood as we would hope it will someday become. Docs don't quite know what to do with this as there is no treatment for increased cytokine load at this point.
FYI - I treat the eczema flairs with Eucrisa. Very effective and no side effects for me. Per my dermatologist's suggestion, I prevent flairs by using a mild ceramide-based soap to bathe and a ceramide-based cream applied to problem areas (CeraVe cream).
Hope that helps. All the best.
Thank you for the information Hunter it's very interesting and fits as I am ET Jak 2 +.
My hemotologist has seen the rash but doesn't think it's related? He's never mentioned cytokines?
Is there anything we can do / not do to reduce the flare ups? Lots of people on this site recommend an ant inflammatory diet to help stop progression and symptoms of the condition? Do you eat a special diet?
Thanks again.
I'll speak to my GP about maybe a referral to a dermatologist for some cream or maybe the GP could prescribe something ??
Lots of docs are not up on the research re. Cytokine load and do not have a way to treat it directly anyway. However, yes to prevention.
Eczema prevention = avoiding triggers such as perfumed soaps and laundry detergents. Avoiding excess sun exposure. Using ceramide cream as prophylaxis for eczema. Maintaining a healthy skin moisture barrier is really important for prevention.
Other inflammatory issues like like osteoarthritis can be helped. I have had great success with a Turmeric-curcumin blend. Works better than NSAIDS. An anti-inflammatory diet can also help. There are other anti-inflammatory interventions. We just have to do a bit of trial and error sometimes to dind what works. You do have to be careful as anything that is biologically active enough to help you can also hurt you. Supplements do interact with xommonly used meds.
Hope that helps
Hunter do you know of it's ok to take anti-histimine with ET? This rash on my neck is driving me nuts it's a mixture of prickly heat and having a burn. I put some cream on yesterday and think I reacted? Because it was so painful like I had been burnt? The pain eased off later but has not gone. The skin in the affected area is really dry and so I put some E45 cream on today to try and moisturize it but even that cream caused the burning to get worse😭I'm going to see my GP next week Tuesday but I could do with some relief in the interim and thought anti histimine might help???
Would appreciate any advice.
I take Benadryl on a regular basis. You should be fine.
Well I am not a doc or a pharmacist, but from my own years with a MPN - I never had any problem with an antihistamine when I was diagnosed ET and none since progressing to PV. Whether the antihistamine would help would be based on whether your rash is a histamine reaction. I never take any med without checking out the side effects. Some antihistamines can increase blood pressure or heart rate, which is an issue for some. Generally, most are well tolerated. Some can cause CNS depression (make you drowsy) and they potentiate other meds that cause CNS depression.
You would also want to check for drug interactions. Never assume that just because it is OTC it is safe. I use the ePocrates website (free version) to get drug information and check for drug interactions. online.epocrates.com/ . You get the drug info and interaction check with the free membership version.
Some creams definitely make the pain worse. I have found the CeraVe Cream to be soothing and vey helpful for prevention and the Eucrisa to be superb for flairs. OTC hydrocortisone creams can help, but Eurcrisa is way better.
Hand in there. hope you get some relief soon.
I have pv and I do get rashes on my neck that come and go . Very annoying and itchy . Strange thing is I’m jak 2 negative
Yes I too get a rash on my neck periodically- only began when I started hydroxy.
Thanks you for the replies I will definitely take on board the advice including trying to identify what triggers the rash and implenting the preventative measures.
Today has been particularly bad but I think I made it worse by using various creams one of which I reacted to and had intense itching and burning to the point where I thought I may need to go the doctor s it was like having third degree burns sooooo painful luckily I got home bathed my neck with warm water and the burning gradually reduced although it still feels like I've got prickaliy heat😭I certainly won't do that again.
Thanks again for all the replies.
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