Severe itching have ET

Hi Erica, doing OK, have started going out and to the supermarket but feel very cautious and a bit nervy. I wish people would just follow the rules about wearing masks and distancing. I think a big surge is going to happen again
Hope you are all well and keeping safe xx

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Hi @ladicaz, I am well and going out for a walk every day, masked up. I haven’t ventured near a shop though yet. I don’t care what others don’t do I make sure I avoid everyone, pavements are more difficult because of their width, I often end up in the bushes !!!

Erica, I know what you mean, I always move well out of the way,

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Thank you so much for this update, I am so pleased to hear that you spoke to your treatment team about this, it really sounds so debilitating - I’m sorry to hear it’s been going on for so long. I’ve got everything crossed that the Gabapenton makes a difference for you!

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Thank you Alice will keep you updated had one itch that lasted an hour but wasn’t as bad, xx

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Gosh, @ladicaz, thanks for letting us know, that seems a great improvement, please keep us updated.

Hi I’m new to the forum, I too get itchy skin mine gets terrible as soon as I lie down in bed at night. I’ve been reading this thread and it’s very useful so will definitely be trying some of the recommendations. Thank you Claire

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Hi @Fizzytodd, a great big welcome to our forum, I hope you find it supportive, I do. Has anyone on your medical team been able to help with your itchy skin, often the GP or you CNS (Clinical Nurse Specialist) are the first points of contact, if you have them.
If you need to just talk the Blood Cancer UK you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. Take care and keep posting.

Hi @Fizzytodd I echo Erica! a very warm welcome to you :slight_smile:
I’m so pleased to hear you’ve found this thread helpful! The itching you describe does sound incredibly uncomfortable, especially as you say- when trying to switch off at night.
As @Erica brought up, I wondered if you have been able to speak to your treatment team about this? This may give you the opportunity to explore further ways in which you can manage this and be more comfortable.
And to echo Erica again :slight_smile: the support services team are only ever a phone call or email away if you would like to talk through anything further.

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Hi Fizzy,
the itching is no fun, I was given promethazine 25mg to take at night, I also use Dermocool 5%, the menthol smell is really strong but once it starts numbing it a great relief, if I feel it starting even slightly I put the Dermocool on, hope your hubby gets something to relieve the itching,
Take care
Carol x

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Sorry Fizzy, misread your post, thought you said your hubby, hope you get the relief you need. Carol x

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Hi Fizzy, have you had phototherapy, I had it and had no itching for about 3 months, only drawback is you can only have it one course a Yr, 3 days for 6 wks. Worth a try, need to go through dermatologist, Carol x

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Hi All, just a wee update on my itch and being on Gabapenton, had a really bad itch about a fortnight ago lasted from 2pm on and off till about 4 next day. I phoned my beatson nurse and my doc who both agreed I was to double up the Gabapenton. I didn’t have an itch for about 5 wks when I started on the Gabapenton but it starred again, doc said their is a lot of leeway with this med, can go up to 3600mg a day if needed. Hope everyone doing OK.
Carol xx

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Thanks @ladicaz, for the up date on your itch. It sounds as if you are keeping a diary of itching, medical advice and medication, I think that is a great idea. I always think I will remember things and as an example putting things in the freezer without labelling. I think we are having vegetable lasagne for dinner tomorrow, put who knows, as long as it isn’t a fruit crumble we should be OK. How are you feeling and doing apart from the itch?

Hi Erica,
I’m doing OK, today I have been a bit down as there are all the things about national suicide day, my young brother (53) hung himself in June then was cremated on my birthday in July, I kept seeing him just hanging there when I thought of him after it happened, but am getting better thoughts of him now, only see the bad one sporadically. Hope everyone is still keeping safe, here in Glasgow we are on a partial lockdown as we can’t go to anybodys house, missing my granddaughter just glad I can talk to her on the phone.
Carol xxx

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Oh, @ladicaz, I am sorry for the loss of your younger brother, especially during the Covid lockdown, and then he was cremated on your birthday, it must have been such a shock and so so difficult for you. The loss process you have described is, I believe, so natural and as you say it will take a long time and then unfortunately you have the anniversaries.
Now you are back in partial lockdown and cannot visit anyone and you must really miss seeing your granddaughter.
We are here to support you and perhaps this is a place you can post what it is really going on for you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk to speak to someone.
Be kind to yourself.

Thanks Erica, its nice to know I can speak to someone outside my family unit, Carol xxxx

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It helps so much @ladicaz to have this space doesn’t it. So many people to listen and support. Keep sharing and please, take good care of yourself! X

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Hi @ladicaz

We’re so very sorry to hear about your brother, as you say, with it being National Suicide Awareness- we can only imagine there are likely to be triggers. How have you been doing?
As our other lovely forum members have said, please keep reaching out for support- be it on here or our support line :+1:

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Thanks Su and Nicholas, it’s good to know someone is there. I’m doing OK, hope you are all staying safe, xxxx

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