Crawling....😡😡😡😭😭😭

[Porphyriamaniac]

Hi all, hope this finds you well? My skin feels like it's crawling again, I could pull it off from my scalp to my toes, making myself bleed n scab. The itching cant be down to high bilirubin, it must be the porphyria 🧛‍♀️. Dermol and antihistamines doing nothing, any suggestions at all? I will try anything! I'm currently considering the cheese grater....😢🤬 xxx

[Hidden]

Sorry porph but I can’t help. Never had it that bad. Anything from answers to similar posts that might be helpful?

Hope you get it sorted!

Miles

[Porphyriamaniac in reply to Hidden]

Thanks miles, it's bloody awful 😖. I've just had to chase haemotology appointment up as it's 4 weeks overdue! Imagine forgetting about me! I probably need some blood out and maybe he can help. xxxx

[Hidden]

Hi Stacie- So sorry to read of your discomfort. It really is important your liver specialist reviews you. Could you possibly consider contacting their medical secretary? They may be able to organise a quicker follow up?

Wishing you well

Trust1

[Porphyriamaniac in reply to Hidden]

Hi Trust, thanks for your reply. I've rung haematology and they are aware I'm overdue and trying to get me an appointment. I can't get in touch with the gastro secretary, she is like houdini! 😁 but when I see the haemo I will mention the itching and he will most likely pass the buck to them anyway. Xxxx

[Hidden in reply to Porphyriamaniac]

It is so frustrating trying to reach some people! Maybe try via hospital switchboard to see if they are on leave and another secretary is covering?

Wishing you luck, if you are really concerned about symptoms try your GP.

[Hidden]

Aww Count Stace I usually have at least something I can say but im really not sure love. I hope someone can reach out some good advice soon. Hang in there and hide the cheese grater for now! ❤

[Porphyriamaniac in reply to Hidden]

🤣🤣 thanks phoenix, im currently sat scratching my head, literally..😁ive asked on the porphyria page on facebook, they just suggest phlebotomy, I don't know if that will help, it could be the porphyrins collecting under my skin but I don't see how having blood out will get rid of them from there!? I will let you know if i geg any joy. Love ftom the count 🧛‍♀️😁Xxxx

[Hidden]

I too feel for you and hope you hear from your consultant soon!

Good luck and take care

Trish

[Porphyriamaniac in reply to Hidden]

Thankyou Trish 😁, I'm sure it won't be long now, I just hope they know why it's happening, they don't see anybody else with my condition, it's like the blind leading the blind sometimes 😉. Xxxx

[alfredthegreat]

Hi Porphy. Hope the intense itching is subsiding. All I can add to the conversation is to try to keep cool. Whenever I had bad itching pre transplant it was always worse when warm in bed. I used to sleep like a starfish sticking my limbs out from under the bedsheet. Wife was unlucky, she had the bed quilt doubled over on her side and would wake up feeling like she'd spent the night in a sauna!

[Porphyriamaniac in reply to alfredthegreat]

Thanks alfred, I'm trying and also have my legs sticking out 😁. I work in a kitchen though, so no chance there! I think the heat does make it worse. Xxx

[alfredthegreat in reply to Porphyriamaniac]

I've just seen on TV and advert for a Chillmax pillow from JML. They are claiming it gives you a comfortable chilled nights sleep for £11.99 from Argos, Asda, Boots and more places. Worth a try??? Alf

[Hidden in reply to alfredthegreat]

Alf!

I just love reading your replies to others which are quite funny but not at the time !

☺️

[alfredthegreat in reply to Hidden]

Any port in a storm

[alfredthegreat]

Doesn't help working in heat another bedtime tip....keep turning your pillow over to the cool side to keep your head cooler. When my itching was intense I even resorted to putting a bath towel and a pillow in a plastic bin bag and in the chest freezer for an hour or two before bed ( a bit extreme but it did help). Laid with the bath towel over me in bed. It can work to help you get off to sleep but unfortunately at some point you will more than likely wake up with the infernal itching when your body is back up to temperature

[davianne]

Hi Porphy, I used to do the same as Alf, and in addition used an ice pack wrapped in a thin cloth to rub over my body and head, but as Alf say's, it's only works whilst the towel/ice pack is cold.

David

[Hidden]

It may sound rude, I hope not, because that's the last thing I intend, but had you thought of those gel cooling mats for dogs? There are all sizes. If you were able to get your temperature down to get some sleep, it may help. I don't know if it would be best to sleep on one or under one - maybe both. There's different sorts of them as well as sizes. The soft, very flexible ones look really useful. It's time someone made vests for people if they can be made for dogs? I don't suffer a lot from itch (yet) but I sympathise.

[Hidden]

Porphyromaniac - I hope you have had some relief without resorting to the cheese grater. You don't want to spoil the taste of the parmesan, do you?

[Porphyriamaniac in reply to Hidden]

🤣🤣🤣