Scleroderma & Raynaud's UK (SRUK)
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Dry skin and systemic sclerosis

I have systemic sclerosis and secondary raynauds and saw my rheumatologist yesterday (2nd appt) we talked about things that are different in the last 6 months since I last saw him. I was saying about the patches of really skin mid calf and around my ribs but he says it's not related as the condition doesn't cause dry skin ? It doesn't seem to matter how much I moisturize they are still there. Any ideas ?

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What are you using to moisturise? Lx

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Just normal dove or intensive care

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You might want to try something a bit more 'industrial strength' ;) e.g. Cetroben, or Doublebase emollient. You can get many things on prescription that you can wash in and then use afterwards to moisturise the area. Have a play around and see if you can get anything that works a bit better. Lxxx

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Thanks Lucy. I was surprised when the consultant said dry skin was nothing to do with it ? On a different note I am thinking of getting a group of people together to walk/run 100k over the Wessex down or London to Brighton next year to raise money and awareness for scleroderma for sruk. What are your thoughts? I know it won't be easy and would currently take me around 24 or 26 hours to complete

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Well hon, you are inside your body not me, so I wouldn't dream to presume what you could do if you set your mind to it. I would be impressed with a far lesser feat and anything that you did to raise awareness and funds is worthwhile. Just don't wear yourself out in the process! :) Lxxx

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Haha I feel worn out most days by 4pm !!!!

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Of course it causes dry skin. I should know, I am 89. But things occur in cycles and dry skin too. It comes and goes for varying amount of times.

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Thank you so much

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Sylviaherring,

I use Cetraben for my dry skin with Scleroderma, a dermatologist prescribes in the beginning of my diagnosis end of 2014.

I use it twice a day after showering and stops the dryness and the itching.

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Thank you. I was surprised when the consultant said dry skin was nothing to do with it

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I’m prescribed “Flexitol with 10% Urea” for anhidrotic skin on feet & hands due to my collection of systemic autoimmune diagnoses (Systemic Lupus is one of my 3 primaries). Flexitol 10% is prescribed to diabetics a lot as an alternative maintenance treatment for their anhidrotic feet. I’m finding it extremely helpful! I’ve been wondering if anyone here uses it too...because my podiatrist tells me it’s good for any dry skin anywhere on the body. But i can’t recall anyone mentioning anything here except cetraben & doublebase cream.

Wishing you every best wish for the 100k

🍀🍀🍀🍀 coco

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I use pure lanolin. You can get it in the baby section. Nursing mothers use it on their nipples and it works wonderfully. I used to use Vaseline for years and this is so much better.

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Try Zija GenM moringa silk hand cream and Jergen’s Wet skin coconut oil shower moisturizer (“pat” dry). I love them

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I'm going to give Flexitol a try. Currently I use one or another of the creams I've found helpful: O'Keeffe's Healthy Feet, O'Keeffe's Healthy Hands, Zincofax, Sudocrem and Herbacin and a variety of store brands like Jergens and Dove. I was glad to see that Flexitrol is readily available here in Nova Scotia. I'm always looking for that 'perfect' product for my hands :)

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Yes. What seems to work for me...Jergen’s Wet Skin Moisturizer (coconut oil), Zija GenM Moringa Silk Hand Cream, MAC prep & prime facial mist and Topricin for my tighten forearms. Of course, water intake, daily mutivitamin, biotin in hand hair and skin gummy, probiotic Digestive Advantage gummy, my meds, olive oil in meals and prayer. You will see and feel a difference once you start a focused regimen. I have a drawer full of products but this seems to work effectively for me in the past year, just started the Topricin cream this past week and amazingly impressed of its relief for me. The Jergen’s shower moisturizer immediately relieved my dry thighs from sticking together and feeling as if meshed skin was being torn just to separate them. I saturate all over while skin is wet from shower and then “pat” dry. I no longer have to use regular lotion or sleep in pj bottoms to keep dry legs from chaffing together. If you try nothing else, please do the Jergen’s Wet skin shower prep. Feel better.

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Hi,

I've been dealing with this acute disease since 2017 with secondary raynaulds. In the early stages my legs were the worst in relation to dryness & constant itching. I found Nívea products to be the ok at that time. However as the disease progressed I have seen lots of specialists ( I have been very lucky to have a great consultant) I was referred to the Dermatology dept who tried all sorts, emolients etc. As other people have said I have found Cetreban best but make sure it's the ointment if possible. As time moved on my whole skin tightened to a skin score of 48!, and the arms, across my stomach & below my neck. My face was the worst with resyricted movement. This then caused ulcers & more itching. I was wrapped up like a mummy at times to help stop itching. It's important to push for your needs & be under a hospital that specialises in this disease as Dr's often have never heard of it & are well out of their depth. My type of symptoms were very aggressive. Keep an eye on any changes & make a diary as this really helps. I was on Microphenolate for 6 months but in my case I had no real benefit. There are other options especially if the disease is caught early & it hasn't affected your organs. Ask you specialised unit at the hospital & be guided by them

Try & be positive, I know it's not easy. I' m still trying to adapt 18 months on. I often think how bad it must of been for people years ago & that at least now our issues are being used in research to help others cope. It's early days for this dreadful disease so keep fighting! Xx

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