Itching & MPNs

[hunter5582]

From our friends at MyMPNTeam. A nice and quick piece on itching with MPNs.

Yes, it occurs with all types of MPNs. Per Dr. Gabriela Hobbs.

65 percent of people with PV

50 percent of people with MF

40 percent of people with ET

mympnteam.com/resources/itc...

[bruddery]

hi there. Once again a good piece. I take Jakafi (ruxilitinib) and boy did it change my world. I had almost forgotten just how very bad the itching was. I used to scratch my legs, arms and body until they bled, particularly after being in water. This was awkward because I worked with a group that we used to take swimming. Pool, shower after, and then loads of scratching to try and relieve the itch. The group I worked with would sometimes look at me very strange, it looked as if I had fleas! It really can be a nuisance. I used to carry Piriton around with me. My GP suggested I try adding bread soda to the bath water before I immerse myself, sounds crackers but it actually worked. (Some old bygone remedy?) Showers were definitely a no no. The water pressure from the shower used to immediately set it off. It’s fine saying wipe down, but I really felt like I needed to be soaked to get clean! Anyway thanks for the link, great to be reminded and know how far I have come thanks to the drugs! Best wishes. Janice

[ainslie]

strangely UVB phototherapy is not mentioned, I used it for 10 years daily low dose for itch and it reduced itch by about 90%, exercise also helps , I am now on Rux and and stopt UVB and itch is virtually but not completely gone.

[hunter5582 in reply to ainslie]

Several others on the forum have mentioned using UVB phototherapy successfully. Others have reported success with beta-alanine. I doubt any expert knows all of the options, no matter how knowledgeable they are. That is one of the great benefits of this forum, sharing knowledge and experience. The itching I experienced was a side effect from Besremi. It responds really well to Claritin. The eczema i experience is largely prevented with moisturizers and responds really well to Eucrisa when I have a flare. It is great to have options that work.

[ainslie in reply to hunter5582]

sorry to disagree a bit with you again :-), the guy who wrote the article isnt an expert he is a free lance writer and not a doc. I think most MPN haems will know about UVB phototherapy and if one is publishing or posting an article on itching I think they should have done the basic research as Rux and UVB are probably the two tops for serious itching. I have noticed a few docs inc my original local Haem are concerned re possibility of skin cancer. My local haem dismissed UVB 10 years ago as she said it would give me skin cancer, unfortunately another uninformed view, I have been doing UVB daily for 10 years and get skin checked by expert dermatologist every 9 months , he says my skin is better now than it was when I started, this is probably because I avoid direct sun which has the full spectrum or UVB and UVA whereas UVB phototherapy is usually narrow band UVB only at 310NM.

[hunter5582 in reply to ainslie]

I love it when you disagree! We all learn that way.

The video presentation is by Gabriela Hobbs, M.D. - an MPN expert. The written summary is by the writer. She does not mention UVB phototherapy in her presentation either. Nor beta-alanine. There are doubtless other options too. I do not think any one MPN expert knows all there is to know. They also do not always agree. That is why getting more than one opinion is such a good idea.

I am glad to hear that the UVB phototherapy works so well for you. Others have reported the same positive experience. I have had great success using ceramide cream and cleansers to prevent eczema outbreaks. They are now very rare. When I get an occasional episode, Eucrisa ointment stops it in its tracks. It is a huge relief to not have to deal the itch anymore.

We all need an individualized approach to treating our symptoms. Sometimes this means getting more than one opinion on our treatment options. No provider knows all there is to know. Opinions vary. It is up to us to advocate for ourselves and seek solutions that work.

All the best my friend.

[ainslie in reply to hunter5582]

in the interests of accuracy, it says the article is actually written by the freelance writer who has nothing to do with MPN's and is REVIEWED by the Dr Gabriel.

I agree no doc can know everything but UVB for itch is not everything, it is the basics which most haems and dermatologists are likely to know about and anyone writing an article on MPN itching should have included it as its one of the main treatments which those with itching should know about , I say this because proper MPN itch is torture and will grind anyone in to the ground if its bad enough (been there), hence it should have been included if the intention is to help patients.