I seem to have developed red, blotchy, (can look very dry) marks on the sides of my neck. They flare and subside, but don’t totally disappear. It can look like a mix of being burnt, or throttled (!)
It can vaguely itch, feels a bit sensitive. Could be eczema, (both my parents had issues with eczema…
Anybody else have this experience? Advice?
thank you.
Yes it could be eczema. I also experience flares of this issue. Fortunately, my dermatologist prescribed Eucrisa to treat the outbreaks. Eucrisa is an amazingly effective medication that usually clears a flare within a few days with no side effects. I had previously tried various corison creams that did not work and Elidel which was very painful to apply. The dermatologist also recommended avoiding laundry detergents and body cleansers with perfumes and dyes. It was also recommended to maintain a good skin moisture barrier with cermide based body cleansers and a ceramide based cream after showering.
I theorize that the eczema is indirectly related to the MPN. The JAK2 mutation causes the body to make too many inflammatory cytokines. I believe that this systemic inflammation predisposes us to a variety of inflammation-related disorders. My Integrative Medicine doc agrees with this and recommends treating to reduce systemic inflammation.
Suggest consultation with a dermatologist to ensure optimal care for the skin condition. You should be able to find a viable treatment plan for yourself.
What advice did your Integrative Med doc have for reducing systemic inflammation? I've been on that journey for about 4 months. Have PV with Jak2 1.5 years. About to start Besremi.
She recommended a combination of Curcumin, L-Glutathione, and SPM Active. SPM Active is a fish oil derivative that is a proresolving mediator. L-Glutathione is an alternative to N-Acetylcysteine that she recommended. This combination does seem to help with symptoms like osteoarthritis, particularly the curcumin.
Will look into this combination as well as search for an Integrative Medicine doctor. Thanks. Glad it is giving you some relief. I'm experiencing osteoarthritis as well as tendonitis issues. My diet change has helped some with osteo, but losing too much weight.
I have that same combination of symptoms of systemic inflammation.
Note that curcumin is not readily bioavailable. the formulation makes a big difference. My Integrative Medicine doc recommends CurcuWIN, which is a liposomal formulation found in various brands. The least expensive is the Spring Valley brand which is available at WalMart.
Here are two links to Integrative or functional Medicine docs.
thank you hunter5582, lots of great information for me to work with.
How strange. I have just started to have this as well. I thought maybe a heat rash. I also have pv on hydroxy for 8 years now. I did wonder if it was related. Take care x
I don’t suffer with eczema but was only googling coconut and peanut oil last night.
It seems both are excellent for itchy skin.
I do hope you get sorted soon.
are you on any interferons?
I also had eczema for the first time in my life about six months after my PMF diagnosis. It was treated very rapidly with Triamcinolone cream, which is more powerful than hydrocortisone. Use of other creams or oils, especially ceramide, is probably a good idea for dry skin generally, but they won't quickly get rid of eczema.
you could start simple with things that are just good for your skin. Cooler, shorter showers, unscented dove bar soap and cerave moisturizer twice daily. Cerave is an amazing product line. Recommend it to my patients daily. Also, dermaleve if super itchy in spots is great. Works for neuropathic itch, a little expensive, but can work great. Otherwise, like Hunter said see dermatology as there are lots of other things we can do to manage this. But trying OTC stuff can sometimes do the trick! Hope this helps!
I’ve been having this, too, and figured it was a side effect of the Besremi. I didn’t experience this until after being on the drug for several months.
I developed a rash on my ankle about a year ago. The dermatologist looked at it and said it was eczema. He recommended cortisone 10 for eczema and said if it didn't work he would prescribe a stronger cortisone. It got rid of the rash in about a week. Just my experience.
Best to you
I also experienced something very similar on my face...dry, patchy and what appeared to be eczema? These have now remained localized in my ears! Better than face, I guess! After reading Hunter's reply to you, I would tend to agree...part of the Jak2 inflammatory response.
I recently had a strong reaction taking an antibiotic. I took an antibiotic pill and within the next hour or so took a Hydroxyurea capsule. I broke out in a raised welt rash across the back of my neck. I saw my primary the next day and he changed the antibiotic.
I did not know if this was from the antibiotic or the Hydroxyurea. i did not check with my hematologist, I just stopped the Hydroxyurea for a week.
Dr app
Come on everyone, buck up!
You look really well !
MF for 30 years
Can ET & PV Hereditary
