Someone answered my question about phototherapy to alleviate this awful burning/itching sensation. I have been suffering for 18 months. I have tried so many antihistamines and none of them have had any effect.
I am desperate. I get the symptoms daily for hours on end.
This person kindly mentioned another different antihistamine. and I cannot find the letter. Help please.
I know there is a drug that could help, but NHS is not allowed to prescribe it. If is it a matter of cost, I would happily use all my saving .
I cannot take it any more,
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Hi @oleconchi I’m so sorry you’re still going through this - have you been along to the phototherapy yet? Is this the thread you mean? PV and restless legs - General chat - Blood Cancer UK Forum
Have you spoken to your treating team about any possible avenues of obtaining the other antihistamine, if it’s deemed suitable for you?
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Hi @oleconchi I have replied to you on the tread @Alice_BloodCancerUK has suggested, I hope that thread helps.
You are continually on my mind and please keep us up to date,
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@oleconchi
I have no experience of this nor know if one can recommend it but I know people with skin issues often swear by it but have you tried any CBD treatments??
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Hello @oleconchi
Was this the post?
“I too have been prescribed all kinds of antihistamines and creams to ease the itching… to no avail but Ive resorted to not having a shower everyday instead opting for flannel washes in between shower days and I take cetirizine hydrochloride (which I get a six month supply from Amazon around £4) one as soon as I wake and one before bed everyday and that’s massively helped easing my discomfort. I know isn’t guaranteed to work for everyone but whether it’s medically or psychologically helping I’ve improved nonetheless”.
I can keep looking at other posts to see if there are any other recommendations.
Thinking of you.
Heidi.
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Hi @oleconchi
Is your iron low?
I know iron is counterproductive when it comes to your blood levels but I get itchy when my iron is super low. Itching is a common symptom of low iron and so maybe worth speaking to your medical team that you’re prepared to take an inflated red blood count to relieve some of the itching.
Tablets never worked for me so I used to get iron transfusions (ferinject) that maybe worth considering but it will inflate your haematocrit levels
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Sorry for constantly messaging you @oleconchi
I just can totally empathise with how you’re feeling and from your post you’re having such a bad time of it… I just really wish I can help
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Hi
I use Doublebase cream/gel, before I shower I smother myself in it, I.e. use it instead of soap, then rinse it off… after I have dried myself I re-apply it all over. It stops the burning itching sensation, it works for me. It works well on burns of any type too. Marylin
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What are CBD treatments?
Thank you for all your replies. You are all wonderful kind people.
I am on my way to be assessed again! in order to start phototherapy next Thursday.
I will let you know how it goes.
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Same as …on Ferrous tabs ATM and seem to help…same when my HB Levels are low as well.
First sign of something was not right for me the itching though i was very tired as well.
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Just to comment on the above suggestion re looking into CBD, Cancer Research UK has some info on this - Cannabis, CBD oil and cancer| Cancer Research UK - as with anything, we’d always strongly encourage people to speak to their treating teams if ever they have questions around this. It’s really important people get the right information and advice for their individual circumstances before people use any complimentary or alternative therapies.
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Thanks @Alice_BloodCancerUK for attaching this 
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Phototherapy is a kind a mild radiation which uses either UVA or UVB light,but the third kind UVC isn’t used medically.UVA is stronger and goes in deeper.Generally UVB is used to treat eczema and psoriasis and UVA rare skin lymphomas like mycosis fungoides.I have Mycosis Fungoides but at stage 2b the beginning of the aggressive disorder and UVA didn’t have any affect on it nor did it cause itching but they said it was common and gave a medication to those who did itch.I can’t report on UVB since I never had that.Another from of radiation I have had is Total Electron Beam which uses Gamma Rays.Now it worked,sort of,but only for about 4 months and it came back.
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YES thank you!
I will talk to my GP if I can and ask if I can take cetirizine hydrochloride.
I have had 2 sessions of phototherapy. I am hopeful that it will help to ease my symptoms. However, they have told me that the itching could get worse before it gets better. At least I have been warned!
The treatment is very quick and not unpleasant at all. Just feels like a tingling sensation on the skin. It is over very quickly,
Fingers crossed that it will work.
I will keep you all informed.
thank you again for your support. take care.
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Yes thank you very much. That was the post. You are so kind.
I will give cetirizine hydrochloride a try,
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Hi @oleconchi at least something is happening, and you have had 2 sessions of phototherapy, although you have been warned that it could get worse before it gets better, forewarned is forearmed as they say!!!
Fingers and toes crossed for you and thinking about you loads.
Be ever so kind to yourself and yes, please keep posting
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I’ve heard this also helped someone with their itching
Aloe Pura, Organic Aloe Vera Gel , Natural , Vegan, Cruelty Free , Paraben & SLS Free , Cooling , Soothing, 100ml https://amzn.eu/d/dmCmNbQ
I take a certirizine hydrochloride in the morning and one before bed and take less showers (flannel washes or wet wipes) as I used to has helped me massively
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Yes, that was the exact aloe vera that helped with my husband’s hellish Hodgkin’s itch. Other varieties didn’t. I’m so sorry @oleconchi that you’re suffering this extremely distressing symptom.
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Thank you , Marylin.
I will try that .
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It is me again.
I am having a very bad “attack” this morning. The burning/stinging/ itching is agony. I cant see what I am writing through the tears.
I have had 12 sessions of phototherapy. It was my last hope. I am now without hope. It has not worked. I am grateful to the dermatology department in Brighton who tried to help me. But they are treating my skin… I dont have a skin problem. I have a blood cancer that is causing these horrible symptoms that I have been suffering for the last almost 2 years.
My haematology consultant told me the last time I had a face to face consultation with her, that there is one drug that would help me, but that unfortunately she is not allowed to prescribe it for me. So, that’s it. I feel I have come to the end of the road. There is nothing else to be done. I don’t want to be prescribed any more antihistamines, I have tried lots, they don’t touch it. Creams, most of them make it worse.
Hypnotherapy did not help either. Waste of money.
I am desperate and cannot see an end to this suffering. My life has no quality. There is only one thing I can do, but, forgive me, I cannot go into that.
I thank you all in this forum. You have been my support and confort and wish all of you all the very best from the bottom of my heart. Thank you.
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