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Has Anyone Had Severe Itching With Their MPN? I Was Diagnosed Several Years Ago But The Itching Just Started A Couple Months Ago. HELP!!

Has Anyone Had Severe Itching With Their MPN? I Was Diagnosed Several Years Ago But The Itching Just Started A Couple Months Ago. HELP!!

I have ET, JAK2+. Dx 7 yrs ago but itching just started a couple months ago. It is unbearable after even a cold shower. I use lotion twice daily, no help. I know it has to do with mast cells & cytokines (puritus on a cellular level) with having a MPN. What do you do or take to relieve it?

A myMPNteam Member said:

For a number of years I've had intense itching after showering. I tried all the normal skin stuff like changing soaps, using lotions, and using hydrocortizone cream Nothing helped except benadryl. Last summer (2020) the itching started to increase and become unbearable. My hematologist recommended antihistamines, so I started taking Claritin. It helped but the itching got worse so I switched to Zyrtec. I was up to 6 Zyrtec per day and a benadryl at bedtime. Recently I switched to Allegra after visiting an allergy clinic (they were remarkably ignorant of PV symptoms). But, they did tell me Allegra is the strongest antihistamine followed by Zyrtec and then Claritin. In February I had a colonoscopy and was diagnosed with Crohn's colitis (also a side effect of PV??). I'm on Sulfasalazine for the colitis. It may also have an anti-itch effect. For several months prior to the colitis, I would wake up with severe itching at about 3:00 am I would take an antihistamine and sit it my recliner with several cold packs moving the cold packs from one itching site to another until the antihistamine kicked in. Then I would doze off. Since I have been on sulfasalazine, I have been able to sleep through the night with an Allegra and a benadryl at bedtime. I take an Allegra every two to three hours when I feel itching coming on, so I am up to 5 or 6 Allegra per day plus a benadryl at bedtime. I'm also on a low dose of hydroxyurea to control the rbc and platelet production. Also, I installed a shower wand so I can wash the essential areas and not stand in a shower stream. Hope this helps and gives you something to discuss with your doctor.

posted about 1 month ago
A myMPNteam Member said:

My doctors (the hospital went on a vendetta against my regular oncologist, so I've seen 3 locums and get a new one next month) seem to think I can take the Xyrtec or Allegra at the doses described without serious problems. My liver and kidney functions are good, also. Benadryl is in a different class than the other antihistamines and taking too much can lead to an overdose. Also, it makes me very tired. I'm not a doctor or pharmacist, so you need to talk with your MD about how much antihistamine to take, but I could not function without Zyrtec or Allegra every few hours.

posted about 1 month ago
A myMPNteam Member said:

Hi Lisa,
I have terrible itching as well. It can last for hours and leave me completely exhausted. I have PV, JAKC2+. For whatever reason, the worst itching is always in the morning. I now shower in the evening. I was taking 1500mg Hydrea daily which seemed to help control the itching, but a few months ago I switched to Pegasys (weekly injections) and the itching came back. My doctor wants to increase the dosage, but I want to avoid that. I'm trying two different antihistamines, Zyrtec in the morning and Allegra at night. I also drink lots of water. It seems to be helping. Time will tell for how long.
I hope you find some relief. I know how bad it can get.
Best, Bridget

posted 2 months ago
A myMPNteam Member said:

Thanks for the suggestions Ggrana!

posted 6 days ago
A myMPNteam Member said:

I had it really bad also, I now use a washcloth instead of a that round lufa . And I use Olay body wash, the yellow bottle from Costco and that’s helped me tremendously . Give it a try if you’re still suffering from itchiness.

posted 6 days ago
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