Very very itchy skin.

[newbe]

Hello everyone, I just wondered if anybody has my problem ITCHY skin, and I mean really really itchy skin and even on my scalp. I use epaderm cream but it drives me bonkers. Is this associated with scleroderma I have LSS.

Thank you

Debbie

[Hidden]

Itching is definitely one of the Scleroderma. Symptoms - I have it in both hands and arms - long history of eczema and allergies- but this is entirely different. The only thing that calms it is a cream I get on prescription called Dermacool. I’m more one with overlapping CTDs than fully diagnosed Scleroderma but I have an unusual antibody pointing most to diffuse type. Itching is apparently most common in earlier SSc of either type. It is easing a bit with mycophenolate.

[KatieAnna]

Hi, I had that at the very beginning of having limited cutaneous Scleraderma, but before diagnosis 2 years later. My GP didn't recognise it and after liver tests, which were normal, he said it was in my mind and just stop scratching! It lasted about a year and drove me mad. I just used a lot of normal body lotion, but struggled at work and everywhere. It happens occasionally now but I use diprobase ointment and it helps a lot. Good luck with the trialing of anything else.

[MissusTee]

Are you taking Hydroxychloroquine? This can be an unfortunate side effect if you are x

[Intimeslikethese]

Yes, I had it early in my diagnosis. I also take mycophenolate (oral suspension). But, for me it tended to be worse whenever I ate a dish with garlic in it. I had to remove it from my diet for about a year. It seemed to help but it may have been coincidental.

[LadyKK]

Hi Debbie. I had itchy skin at the beginning too, especially in my hands, wrists, and then it spread up my arms to my elbow. This was over the period of a few months and I'd have good days and bad days, I stopped wearing any jewellery and used natural moisturisers but thankfully it has subsided almost completely now. My skin is tight and I think it is common early on in the skin tightening process, a bit like when the skin is forming a scab and it gets itchy. I have diffuse SSc. Best of luck and hope it eases.

Katherine

[lifeforce]

20 yrs. now with CREST, the last 2 years the itching has been unreal. I have alot of allergies,and Calcinosis cutis. The calcium deposits in the skin itch like crazy. I have bought all of the creams and potions and Vicks Salve works as well as anything for me. Extra Magnesium will help too.

[Patr1c1a]

I find anything made from Aloe Vera helps me but I am not effected as much as you are.

[beesmum]

Hello Newbe

I'm borderline limited scleroderma for approx four & a half years, I've had horrendous itchy skin across my back for approx four years too, recently it migrated to be around my torso too at the front, tops of my arms and front of my lower legs. It comes & goes, sometimes disappears for weeks, then suddenly back with, with a vengeance.

My Rheumatologist recommended a moisturiser with urea in, I bought Udderly Smooth with Urea from Amazon, it helped bit.

However, very recently I think I found the culprit - full fat greek style yoghurt with or without bio live. I cut this out of my diet completely, my itching stopped within 24hrs. If I have small helping of this yoghurt I itch tho very mild. It doesn't make any difference if it's bio live or not, tho I do buy "upmarket" yoghurt, I must buy a cheap brand & see it has the same effect, I'me reticent to do this as I don't want the itching to return!

Years ago (35+) I had a similar problem with cheese & milk, stopped eating/drinking both & the problem went away within 24hrs. I'm fine with cheese now, never ever touch milk.

You may, perhaps, find something in your diet that you eat daily or very frequently is the issue. Good luck.

[newbe]

Thank you I’m getting desperate so I will try going dairy free. I do try not to scratch but it is very difficult. Hey ho just have to try.

Thanks again

[newbe]

Thank you all for your replies

[Dionne-F]

Hi

Been living with LcSSc for years now.

I have numerous problems one of them being mind blowing whole body itch. I found creams don't do much and I've tried the usual ones over the years.

Rheumy has put me on fexofenadine 180mg daily. It's a antihistamine. I also use an antibacterial moisturiser for immediate relief as I tend to wake in the night and rip ,y skin to shreds (mainly my face which isn't a good look).

As this disease is dependant on the individual and their immune system, it's trial and error with such things.

Hope you get some relief soon

Dee x

[LMB1366]

Hi I don’t write on here very often but I have diffuse Scleroderma with some of the obvious problems with swallowing, Linda, ulcers on my fingers and knuckles etc. I itch badly and particularly worse at night. I am prescribed an antihistamine called Hydroxyzine Hydrochloride 25mg and it helps very much. I don’t itch once I have taken it and keep it up regularly. It also helps me sleep for about two hits solid as my sleep is horrendous. Good luck with this. X

[EnglishRose63 in reply to LMB1366]

Hi, sorry to jump in but do you take Hydroxyzine Hydrochloride once or twice a day? Just been prescribed it for whole body itching. Thanks

[Shellybrown]

Have your levels of vit D checked whether you go in the sun or not.

I had severe itching on my scalp my feet and my torso and face for years.

I came off wheat and read that vit D helps with sclero so l starting taking D3 and after more research, l added sulphur in the form of MSM powder. If l go back on wheat or go without the sulphur powder or vit D it all comes back.

Hope that helps.

[Hidden]

About 10 years ago I had bout of itching which turned out to be due to tomatoes so don't eat them now. 18 months ago I was diagnosed with Systemic Sclerosis and for the last year I have been plagued with itching. I was seen by my rheumatologist and a dermatologist and they both said it was not related to my Scleroderma. I am not convinced they are right. I have been taking fexofenadine 180mgs twice a day as well as washing and moisturizing with Dermol. This has calmed things down. Additionally I have changed my shampoo from T Gel to Nitzoral. I have changed my washing powder to Surcare sensitive and increased the number of rinses per wash. Lastly, I am very careful to always use gloves when washing up and cleaning. I have looked at food triggers but this time there don't seem to be any. This last week my itching has suddenly seemed to have disappeared and I have stopped taking the Fexofenadine with no adverse effects. So I'm hopeful that my itching has gone for good! Good luck.

[Hidden]

This is a reply I got when I asked about itchy skin. This was Frilly Billy's reply

(Sorry it's a bit long and also I use prescribed shampoo, so I can't help with the "hair", Hope the rest helps)

Hi,

I have super sensitive skin, which is also very dry

I use the following:

Washing Up Liquid – Fairy Platinum, but I only do a few items at a time (my wonderful husband does most of the washing up because it’s too much for me) We always use the washing machine, so these are products that do not upset me on dry clothing:

Washing Powder - Fairy

Washing Liquid for Fragile Material – Persil Silk & Wool – I used to get it in my supermarket but they stopped stocking it so I buy it from Amazon Pantry.

Fabric Conditioner – Lenor – I don’t know why but it just works. I believe Fairy make a fabric conditioner but I haven’t needed to try it

Possible alternative to Fabric Conditioner – we’ve got 2 balls with lots of knobbles on them which help reduce static and theoretically replace the need for fabric conditioner. They work very well with towels (which I don’t condition), but I’ve never used them only on my clothes because I tend to wash a mixture of clothes together, some of which cannot be tumble dried, so I always condition. There is a slight problem with them which is that they are quite noisy when they bang around the tumble dryer, but we have got used to them. I can’t suggest where to buy them as we got ours from our regular door-to-door salesman.

Soap Bar – Simple soap. I only use this to wash my hands, it is the best way for me to wash my hands

Liquid Soap – this is such a nuisance because they are always changing the recipe. I can use CAREX SENSITIVE. Sometimes they do more than one sensitive “flavour” but at the moment they just do one. I think it itched a little the first time I used it but it was fine the next time and I have used it for several years now.

Washing Face & Body

I also use two “medical” creans, which I think you can buy:

Cetraben & Hydromol Cream for moisturising.

Soap Alternative – Cetraben. Two ways to use:

(a)Normal wash for face and body – wet flannel, add some cream, wipe it over your face or body, then wash off.

(b)For a deep cleanse and moisturise – this works on your face and your body – cover the area to be washed in a thin layer of cream, don’t rub in

-(i)For the face – get a flannel with hot water on and pat all over the cream, then rinse flannel in hot water again and then wipe off the cream

-(ii)For the body – either wash off with a flannel or if you are doing the whole of your body at once stand under the shower – sometimes I need a flannel, sometimes it just rinse’s off,

Scented Things (occasionally)

I also get on with the Sanctuary Spa range (I buy from Boots) and the Cologne 4711 range. For “perfume” I can use many eau-de-colognes' (4711 and Boots do a variety) - I think it is because they are not heavily scented. I only use these things on my body and only when my skin is not too dry. I found out I could use these because I was given them as presents – I would never have thought to buy anything like this otherwise. It is lovely being able to use "smellys" occasionally.

I hope these ideas help you

Take care and keep yourself safe. xx

[SaraMc23]

I have the same issue!! Was only just diagnosed with limited scleroderma before lockdown, so still waiting to see a dermatologist, but I feel like I want to peel my scalp off some days, as it's that itchy!! I feel your pain for sure! Any recommendations for what I can use on my scalp would be very much appreciated!