hi, does anybody have any experience of contact urticaria or any effective treatment? I have PV and my symptoms are skin itchiness after shower but also when the skin is rubbed (contact urticaria ).
Moisturiser tends to irritate it, and I have tried different antihistamines and they don’t seem to work. thanks!
I have ET and itchiness on my back, shoulders and chest oftentimes happens after taking a shower as well. I found that Cortisone 10 cream (over-the-counter) works fairly well to relieve the itchiness.
I do not have experience with contact urticaria but do have to manage atopic dermatitis (eczema) and some itching and rashes associated with a Besremi adverse effect. I have always had some skin sensitivities, likely associated with another condition, Neurofibromatosis Type 1.
Several of the things that work for me appear not to work for you. I do take a daily antihistamine to control the itching adverse effect. I also use a ceramide-based cream (Cera Ve) to maintain a healthy skin moisture barrier. The latter was recommended by my dermatologist. My dermatologist also recommended Eucrisa (PDE4 inhibitor) for eczema outbreaks. It is very effective for controlling eczema and does work for other purposes.
Other interventions include identifying triggers. Certain fabrics are known triggers for me. There are also chemical triggers that I have identified (e.g., the preservative in new fabric). I have eliminate all perfumes/dyes in laundry products. I also eliminated all scents from soaps/body wash/shampoo. I use a ceramide-based body wash instead (Cera Ve).
At the core, MPNs are inflammatory disorders, We are more prone to a host of inflammatory issues, some of which can affect the skin. Controlling systemic inflammation is a key part of managing MPNs and the symptoms we experience. There are complementary health interventions i have found to be helpful. I use a combination of curcumin, L-Glutathione, and a pro-resolving mediator (SPM Active). Note that I consult with an Integrative/ Functional Medicine doctor. While these interventions can be very helpful, anything that is biologically active enough to help you can also hurt you and interact with things. If you want to consider complementary health intervention, suggest you be sure to consult with a knowledgeable medical professional and be sure to let your care team know what you are using. ifm.org/find-a-practitioner/
Another consideration would be whether Jakavi (ruxolitinib) would be appropriate for your cluster of symptoms. The deregulation of the JAK-STAT pathway does more than make too many blood cells. We also experience increase production of inflammatory cytokines and mast cell activity. This is directly related to the type of skin issues you reeport. Jakavi can be very effective in resolving itching when it is associated with the JAK2 mutation. Note that the topical version of ruxolitinib is also used to treat skinny issues like atopic dermatitis. This would be an issue to discuss with a MPN Specialist, perhaps in collaboration with a dermatologist. Collaboration would be facilitated if you are being seen in one of the MPN centers associated with a larger university/hospital system.
Chronic unremitting itching is a very significant issue that diminished quality of life. It does need to be addressed. The good news is that there are things that can help. Working with your care team and using shared decision making will ensure that you find a solution that works for you.
Wishing you all the best in finding your solutions.
Thank you Hunter for taking the time to share your knowledge and experience. This is super helpful.
In my case a proper diet to slow down the immune system, cold showers and oil organic of lavande work... until now. But, there is a friend who started Ruxolitinib and she is happier. I try with natural remedies at the moment.
With pruritus....itching....it's very tempting to rub harder with towels etc , to attempt to relieve the itch...but, like scratching the itch , it releases histamines under the skin and makes the problem worse.....causing the itch/ scratch cycle x Hunter has suggested the best routine to change to above x
Also rubbing skin too hard with a towel can cause inflammation around the hair follicles...x
My wife has pressure urticaria, where her skin goes red and itches like made if she puts pressure on the skin by lying down or resting her arms orlegs on things. I get it but fortunately I don't itch, just go red in the area. My wife saw GP for 4 months with trying all sorts if creams etc. Referred to dermatologist, but a 2 year waiting list. Went private in the end (£150). He prescribed antihistamines. Recommended dose is one a day, but he said he was going off licence and take 2. If that didn't work then take 3 and up to 4 a day. Initially she was on 4 a day, but is currently on 2. I wouldn't recommend you do this without medical approval. Our local pharmacy won't write the dose on the box as its against manufacturers instructions. The dermatologist also gave a list if other medication to use on a short term basis if antihistamines stop working - to bring it back under control and then go back on antihistamines. As above I wouldn't try this without medical supervision. My wife doesn't have an MPN, but other health issues. May be worth consulting a Dermatologist.
Hello STK52. I had unbearable itching it got to the point where I would be showered, dressed, ready for work then had to run around the house (trying to get away from myself!!) finding some sort of cold moisturising cream to plaster over my skin. (& still get to work on time!!) It went off after about an hour. It was distressing. My ET had progressed to MF so my new MPN consultant gave me high dose antihistamines that ‘took the edge off’. I developed severe fatigue & bone pain etc so I am now on Jakavi ( Rux). This cured the ‘itching’ ( too mild a description!! personally I think it’s more like ‘stabbing’. ) within 3 days. So I am thankful for that & I so empathise with you.
Obviously Ruxolitinib is not just for the one symptom & has to be seriously considered & weighed up on an individual & personal level, with your medical team.
As I am dealing with other side effects of the tablets now! As opposed to the MF symptoms! Such an individual journey we are all on but with cross overs!
Best wishes & Good Luck 😊
my advice maybe a combo of others. Cerave is amazing moisturizer! You will love it even if it doesn’t get the job done. You can consult your doctor on increasing antihistamine to twice daily. True urticaria is best treated by antihistamines. And if you are not on xyzal you can try that one and then discuss increase with doctor if doesn’t help. There is also a cream called dermaleve. It is more of a neuropathic itch cream but works well. And of course cool, short showers moisturize right after. Topical steroids can also help some. You can start with OTC stuff but may need a script. And there are all types of non steroidals that are prescription, Hunter mentioned one, Eucrisa. You can discuss other options with your dermatologist.
Hi. Antihistamines from the stores did not ever register with my itch. I am taking quercetin (one in morning with breakfast the one in evening.) from the health food store. It is a natural anti-histamine. It gets better absorbed when taken with a fat). I was also drinking nettle teas and tinctures at the beginning but don’t now. I only take super hot baths never shower any more. Feel really good, no itch most days.
I tried lots of creams and such- enjoyed the green bottle of Gold Bond the most.
My MPN specialist is okay with me taking the quercetin since I am on no other meds and doing great with Pegasys.
I also use a heating blanket on my legs at night if they are restless and itchy. Many nights I sleep with legging on because the skin feels so tender to the blankets. The heating blanket works for shoulders and backs too.
Good luck to you! I understand and hope you find a solution. 😵💫
itchy red spots
Do you have a contact / support person at your hospital? 
Coping with itchiness and side effects of peg-interferon
