Hi oleconchi, i have had photo therapy and it helped a great deal, you can only have it once a year. I also take Gabapentin 3 times a day which is the best thing I have ever taken. Ask your consultant and nurse regarding these therapies, Carol.
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Hi ladicaz
I have just seen your reply. Thank you so much.
I am starting my phototherapy treatment next week.
It is my only hope. I am still suffering with terrible itching most days for hoursā¦.my quality of life is non existing at present because of it.
I will let the forum know how it goes. I am hopeful.
Thanks again. Fingers crossed,!
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Really hope the therapy gives you some relief. It sounds really tough at the moment. Keep us updated x
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Wishing you well @oleconchi, please let us know how you get on.
Gemma
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Hi @oleconchi I have been thinking of you and I just wondered how you are doing now.
Look after yourself
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Hi Erica
Thank you for thinking of me.
Things are not good at the moment.
Having gone through half of my phototherapy treatment and not seeing any improvement on the itching and burning symptoms, the specialist dermatologist informed me yesterday on the phone that the treatment should be discontinued. They have now suggested a different type of phototherapy PUVA I think it is called. Or a combination of other antihistamines.
I need more information about This PUVA so I went on line to find out. It involves taking a drug (chemotherapy ) 2 hours before the treatment. As I am already taking hydroxicarbamide, I am very reluctant to start other treatments involving more chemo
I feel that they are treating me as if I have a skin condition, which is not the case. There is nothing at all on my skin, this itching burning 
Is underneath. Different combinations of antihistamines donāt touch it.
Sorry to go on and on. The truth is I am desperate.
If anybody with Polycythaemia vera (PV) is going through the same torment; please get in touch.
Take care and again, thank you for your support.
Oleconchi
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Oh @oleconchi I am so sorry to hear that your current phototherapy has not seen you get any improvement or relief.
I will copy this to the @BloodCancerUK_Nurses so they are aware of this update.
Perhaps your medical team are best placed to answer your questions.
Letās hope you get some experiences from other people that might assist you.
Thinking of you loads and take lots of care
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Hoping somebody can share their experiences and everything crossed that the new treatment gives you some relief x
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@oleconchi, I am very sorry to hear that your treatment has been ceased. It is good to hear that your treatment team are suggesting options for you. I appreciate you are worried about embarking on other medications but I would discuss this with you treatment team. I have read some information here from the British College of Dermatology British Association of Dermatologists that may be helpful. It does not specify that medication is a chemotherapy as such but that it makes the skin temporarily sensitive to UVA. It may be taken as pills by mouth or by applying it directly to the skin.
Do speak to your team as I know this is such a difficult time for you and take care.
Gemma
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Thank you, Gemma.
I have almost decided not to go ahead with PUVA treatment.
Having read all the information about it and the possible side effects, I have more or less made up my mind.
However, I will keep my next appointment with the hospital next Tuesday. They offered me another combination of antihistamines, which I will be happy to try.
Has anybody tried acupuncture as a possible treatment for these flare ups of burning/itching skin? They are driving me insane!
Thanks again for all your support. Oleconchi
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Hello again @oleconchi
Which ever treatment you chose is your decision, I am glad you have some options.
I would say that if you are considering acupuncture please do mention this to your treatment team.
Take care
Gemma
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Hi @oleconchi
So sorry to hear of your continued plight
I too have Polycythaemia vera (PV) and getting itchy, happy to connect and share experiences
Regards
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I too suffer with severely itchy skin, and I find arnica ointment helps. Also aloe Vera gel is very soothing.
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