itching

[Pogm]

Hi community,

I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination of Zrtec or Allegra and Pepcid. The combo works with both H1 and H2 receptors responsible for the histamine overload. As anyone heard of this combination? I used it once and it did calm things down though I don't know if I want to put this into my body on a daily basis. Appreciate any input. Thanks!

[C_Anne_Orange]

Hi - I have PV and have been on Besremi for a little over a year and in January I started to have terrible itching after showering. I tried Claritin, Zyrtec, and Benadryl with no luck. My MPN specialist mentioned starting a low dose of Jakafi, but I'm reluctant to do that on top of the Besremi. She also mentioned a new topical cream that is Jakafi - prescribed specifically for dermatology issues, it's called Opzelura but I think not approved for MPN's. In any event, a number of our colleagues on this site recommend the Beta Alanine powder for itching. PhysAsst was very helpful in describing this solution. It's available through Amazon as well as other sources of vitamins and health foods. It has helped my itching a lot, I still have itching but not anything like it was (ants crawling all over me - horrible). Different people use different amounts and frequency. I take 3 grams (using the supplied scoop) in the morning in water (no particular taste) and then when I am showering in the evening I take about 2 grams a while before. It may not work for you, but it seems to have minimal side effects and may be a low risk approach to improving the itching. I'll be interested to see if you or others have combined Pepcid and Zyrtec or Allegra with success? Best of luck in finding a solution that works for you!

[ainslie in reply to C_Anne_Orange]

Some do very well adding a little Rux, in fact some docs like Hasselbalch thinks the combo is a good idea for other reasons anyway.

[Chicagopv]

I’m on a Jakafi because of itching. I still sometimes take Atarax (requires an rx). I’ve also gotten Emend, off label, but it’s very expensive. I used light treatment also, before Jakafi. I’m in the U. S. Best of luck!!!

[SoledadBarcelona]

RUXOLITINIB also works good for some patients. The combination of Besremi and Rux, according to some papers, work well. Check about it.

[SoledadBarcelona in reply to SoledadBarcelona]

w.ncbi.nlm.nih.gov/pmc/articles/PMC8568425/

[Deevie1]

Hi, I also use beta alanine powder, it has really helped my itching to the point that I don’t worry about it anymore and I was so stressed out about it last year. Take with a full tummy to avoid quesy feeling and best of luck, it was a game changer for me 🙏

[TwinMom88 in reply to Deevie1]

Another vote for BA - it’s a lifesaver!

[Mazcd Partner MPNVoice]

hi Pogm, so sorry to hear that you are experiencing the terrible itching. Always best to check with your haematologist before using/taking any creams, supplements etc, just to be sure that you can and that there aren't any contra-indications with the Besremi.

We do have some information on our website about managing itchy skin which might help mpnvoice.org.uk/living-with...

Kind regards, Maz

[Wendrew]

I’ve started taking an antihistamine in the morning and Benadryl at night to cope with itching

[havashan]

I have ET and take Peg for it. I tried the Zyrtex /Pepsid combination but it didn't help me although theoretically it should since it targets both H1 and H2 receptors. I have found almost complete relief with beta alanine. I take 1/2 tsp in a glass of water at least 1 hour before I shower or swim. I hope it helps you.

[Pogm]

Hi everyone,

Thanks to all of you about solutions to itching! I have an appt. with my MPN specialist next week and I am going to ask about Beta Alanine and the combo of Jakafi/Besremi. Your responses have been very helpful!

[KLCTJC]

Absolutely that combo works great for itching. In Dermatology we of course use lots of topicals for itching and we use a lot of off label meds for it to. If you want to talk about some of that I would be happy to and maybe helpful pending on your dermatologist and your other conditions. But a great OTC anti itch cream is dermeleve. More for neuropathic itch, but maybe helpful. But if the antihistamines work besides avoid hot water, moisturizing, that can be a very safe regimen. Cerave is awesome too!

[summerdown]

E45 make a cream for itching - I found it helpful - I seem to itch more on the chest.

[Doxy46]

I have mild hypoglycemia and ET, and take Hydroxyurea. When my blood sugar is low, the itching is much worse. Sucking on hard candies helps relieve my itching in a few minutes. (The sugar goes directly into your blood through a sublingual access point under your tongue.) Thing is, I don't always know my blood sugar is low until the itching starts. Then a little while later I get hungry, so I know blood sugar is the problem. The candy is the short term fix until I can eat something.

[Plateletsgonewild]

I have clonal mast cell disease in addition to Jak2+ ET and there's a diy anti-itch cream recipe created by a nurse with systemic mastocytosis that involves mixing cromolyn sodium (a mast cell stabilizer) with lotion. You should check with your doctor to make sure cromolyn sodium is okay with whatever meds you are on but it has been very helpful for me. Here is the website: mastokids.org/magic-masto-l... or Google "Magic Masto Cream"

[SoledadBarcelona in reply to Plateletsgonewild]

Thanks, it is very interesting. I think we can have mastocitosis too. Who knows in MPN.