Severe itching have ET

Hi, I have had ET for approx 5 yrs, am on hydroxycarbomide 1g x 3 days, 500mg x4 days. I get really severe itching which is right deep down, it feels like wee beasties running about under my skin. Have 4 different antihistamines, fexofanadine, citrezine, chloraphenamie and promethazine which I can use, also got demol 5 and centraben cream. When itching starts I take allowed dose put on cream, but it can take an hour or more to start calming down. Yesterday (07/0402020) itching started about 11am took meds when required but just as it was settling it would flare up just as bad, it is so hard not to scratch, I have broken my skin due to the scratching, it drives me mad. Had photo therapy and it lasted for about 3 months with no itching. Being like this upsets my husband and grandson as they are unable to do anything for me. Does anyone know anything that might work quicker I am on co codamol 30/500 but they dont help I aslo have been given diazapam 2mg and dosulepan 25mgto try calm me down but again takes its time, I feel that if I was in severe pain I could get a high dose injection or meds that would work within 5 to 10 mins. Grateful for any help xx

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I am so sorry I cannot help, it sounds really horrible and as you say it is not just affecting you but your family as well. I hope others can help.

Hi @ladicaz thank you for your post, sorry we haven’t replied to this before now! I am so sorry to hear about this severe itching you speak of. It sounds incredibly frustrating and difficult for you.
Have you had a conversation with a member of your treatment team such as your clinical nurse specialist recently, about how the current management of this itching you’re experiencing is working for you. They may be able to offer you an alternative treatment to manage the itching, that you haven’t already tried. It’s really important that your treatment team is aware of everything you’re experiencing, as they can offer you advice tailored to your individual situation.

In case it helps at all, the organisation ‘MPN Voice’ has some information on itchy skin, as well as some general tips from other people who have also experienced this, which you can find here - https://www.mpnvoice.org.uk/living-with-mpns/everyday-challenges/itchy-skin.aspx. I’ve also found some information from Macmillan. which you might find appropriate for you? https://www.macmillan.org.uk/_images/dry-sore-itchy-skin_tcm9-356295.pdf

If you’d like to talk any of this through @ladicaz please don’t hesitate to get in touch with us on our support line. We would be happy to help in any way we can.

Does anyone else have any tips they have found that helps with itching?

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Hello Caz. My husband had severe, all-over itching due to Hodgkin’s. Like you, he tried every anti-histamine and many different itch creams. The look of panic in his eyes when it started up was so hard to witness and it drove him almost insane. You and your family have so much sympathy from me. The word ‘itch’ just doesn’t convey the torment and it was difficult to get even medical staff to understand the distress of it. There should be a different word! After much trial and error, three things helped.

A wonderful nurse recommended Aloe Vera gel. A specific sort called Aloe Pura Organic Aloe Vera Gel. On the tube it also says Natural Actives Bio Active Aloe Vera 99%. I bought another kind from Holland and Barrett which also claimed to be pure and it did nothing but this one calmed him almost immediately. It also forms a protective film over the skin so you’re less likely to get infections from scratches. I’d never have tried something like this because the itching was so extreme I thought, like you, only some kind of pharmaceutical knock-out would override it. I’ll try to hyperlink it here.

https://www.superdrug.com/Skin/Body-Care/Body-Gels/Aloe-Pura-Aloe-Vera-Skin-Gel-200ml/p/732278

Also, Arjun 1% cream which a haemo doctor prescribed. It contains menthol which sounds counterintuitive for sore skin but the idea is that it confuses the nerve endings and the warmth diverts them from registering itchiness. It also seems to be widely available.

Thirdly, he was never more than ten seconds from a charged portable fan. He took one everywhere and I always made sure he had a couple by his hospital bed. Combined with a damp cloth this really helped although we were warned to use a clean cloth each time and not to leave cloths on too long due to infection risk in broken skin.

None of these completely solved things but they did save him from insanity. And I don’t say that lightly. With a different cause you might need a different solution but I hope you find relief somewhere. The Aloe Vera nurse also recommended Neem Oil. We didn’t try it because the Aloe was so effective but that might be another one to try. Good luck and best wishes.

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Hi Jill thanks for this, will give it a try, I havent heard from anyone with it so severe, I can certainly relate to what you are saying. I get the feeling that when I mention it to doc or cancer nurse they think it’s not to bad, I have only once had a doc see me when it was really bad, while sitting in waiting room I was rocking back and forward and people were looking at me as if I was a junkie, people just don’t realise how bad it is until they experience it or watch a loved one suffer. My 13 Yr old granddaughter got a fright first time she saw me like that, something I didn’t want her to witness as her being upset made me worse.
I hope you and your family are safe in these difficult times, take care and stay safe, weay speak again xx

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Gosh it sounds so debilitating and difficult, and I imagine it’s so frustrating when you feel like your healthcare teams don’t seem to understand quite how hard it is to cope with.

Thank you @Jill1 for sharing these tips! I’m sorry to hear your husband also had this symptom.

Has anyone else experienced this?

Alice

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Hi Jill, thanks for joining our community forum and I hope it supports you both as much as your post will have helped and reassured others. Stay safe and keep posting how you are, this forum is for you as well.

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Hello Alice and Erica. Thanks for the welcome. I originally came here last year for itch advice and was a silent forum reader throughout the frightening and very lonely times with my husband’s illness. I finally registered a couple of weeks ago. You’ve been such a good resource for information and it’s been reassuring to know there’s a safety net here if we need support. He’s due to have his final chemo next week. Fingers crossed Corona doesn’t delay it.

Caz, do come back and let us know how things are going for you. I’ll be thinking of you. xx

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I certainly will, did your husband have anything that triggered the itch, mine just starts from nowhere. Hope his chemo goes well xx

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Thank you, Caz. Such a strange time to be having chemo as all the usual anxieties have been replaced with a whole different set.

His itching was fairly random. It could happen at any time of day but was more frequent at night, which was difficult because I couldn’t be there to help him when he was in hospital. There was possibly also a link with adrenaline as he’d sometimes get attacks when mildly stressed, going for x-rays etc or even just at mealtimes. The heat definitely didn’t help in hospital. We kept sneaking the window open a crack as fresh air is discouraged on wards! But as often as not, as is the case with you, the itching would just erupt for no apparent reason.

I mentioned you to him and he says to be prepared for the burning sensation if you use the menthol cream. It sounds unpleasant to me but he says it was far preferable to the itch.

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Thanks Jill, please keep safe and will keep my fingers crossed all goes well with the chemo. Take care

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Hi everyone, I hope you are all okay? It’s so encouraging to hear how much you are all getting out of the forum. We do really encourage you all to continue to share tips and personal experiences. Sometimes what others who have got in touch with us, going through similar experiences, have said finding distractions can help them. For example, doing an activity to distract them and take their off things. Anyone have experience of this?

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Might sound weird but I downloaded the colouring app called Happy Colour and am finding it calming, it is surprising how the time flies, hope some try it. Keep safe everyone :blush::blush:

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@ladicaz ah really? I’m so glad to hear you’ve found something which helps a bit. I have never actually heard of this app myself. For those of us who haven’t come across it before, would you mind telling us a bit more about it? sounds really interesting!

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It’s a colour by numbers, some easy some a bit harder but really passes the time.

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@ladicaz oh I see! thank you for sharing this! :slight_smile: I can definitely understand why that would be a really good activity to shift the mind away from something else. How did you find out this?

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I was looking on playstore to see if there was anything I fancied doing and this came up, it’s also great when you are travelling.

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@ladicaz what a good find :smiley:! Thank you so much again for sharing, I have no doubt this is likely to be really helpful to others too :+1:

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Hi all just a wee update on my severe itching, it was so bad I phoned the Beatson, told them how bad it was and docs had a discussion and decided to put me on Gabapenton as they think it might be a neuropathic itch as it is under the skin, started it on 28th July, had a few itchings, but know it will take a couple of weeks to get into my system. Will keep you updated as how it goes. Hope everyone is keeping well x

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Thanks @ladicaz for the ‘wee’ update, I call it a substantial update. After a week things seem improved, please let us know how you are in a couple of weeks when the Gabapenton gets into your system. Take care and how are the government guidelines affecting you?

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