Sjogrens sicca dry overheated skin symptoms are even worse for me this winter than ever. Complicated by my raynauds being simultaneous with erythromelalgia, all are secondary to my infant onset systemic lupus.....along with various other typical secondaries. Am on daily hydroxychloroquine + mycophenolate with other repeat prescription meds - mainly topical steroids & antibiotics
I've had enough years learning to manage all this, and trying various over the counter moisturising products. So far, Aqueous cream doesn't work for me...I react to something in it....probably the ingredient sodium lauryl sulphate which is so damaging that the UK national eczema society recommends aqueous cream never be used as a leave on moisturiser. On the other hand, aloe Vera gel is good for summer, and the thickest poss shea butter for winter. Plus prescription betnovate cream to stop chilblains before they weep. Prescription Emulsiderm is good for bathing. I avoid soaps of any kind. I take high dose vit c & d daily as part of an antiinflammation diet & supplements thing I've more or less been sticking to for 10 years (am 61).
Am coping ok I guess, but my feet are especially needy for moisturising in winter....I do file off the dry hard skin every week which helps...and I slather on OTC shea butter moisturiser thickly....but an older friend with rheumatoid arthritis has just told me that she is getting good results from the cetraben emollient cream her gp prescribed recently. Am seeing my gp on Monday, and planning to ask about cetraben....but first am wondering: does anyone here have a prescription emollient cream that works really well for them?
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Hello, I also use doublebase gel, BEFORE going in the shower. It has a lovely soft texture and non-greasy' I noticed last time I was in the chemist that there are other products in the range, a post-shower gel was one of them, I think. I also use aloe vera oint on my hands. Most things just help a little.
Ah ha! Vvvv interesting...when I googled doublebbase I briefly saw there are loads of types....will check them out. For now my gp is giving me prescription cetraben to trial....meanwhile I'll study the doublebbase range! Many thanks, Yorky!
I too, react to Aqueous cream. I use a brilliant soap substitute/light moisturiser called Dermol500 whose manufacturers (Diomed) also make doublebase. But for something thicker my GP prescribed Zerobase, which is not one of the many products made by Diomed. Haven't used it for long enough to really test it yet but it's another name for you!
Great: very good to know about all these makes! Will check them out. Interesting about our reactivity to aqueous cream!
I've been "managing" ok with OTCs etc for so long....just feel the time has come to see if prescrip products can give me even more.
My husband also has his own version of chronic dry skin issues (related to crohns), so this info could help him too. And I have lupus friends who will be interested.
I use coconut oil mixed with my mary kay moisturizer every night it helps the best i could find !Sometimes if skin is very irritated i use just coconut oil it heals it !
V glad of your comments stevie...especially because yesterday I tried my jar of pure organic coconut oil & wondered because it seems so oily....my feeling was to apply the coconut oil first and then apply my fav otc moisturiser over the coconut oil. I guess this is all about experimenting....and last night my husband read me the contents of his fav otc (an Aveeno) moisturiser: one of its main ingredients is Shea butter, which so far has helped me most to cope with my version of dry skin...I googled shea butter and found out that over the centuries (literally) it's been especially prized for minimising all sorts of skin conditions etc....so I'm feeling as if I'm on the right track, one way or another. As usual this forum has helped me a lot.... Many thanks!
You right it's all about experimenting what works for 1 person may not work for someone else .Shea butter is what i use on hands & foots never thought to use on face . Palmer's Cocoa Butter Formula with v-e is good to and doe's not cost much walmart about 6 dollars for a pump size about 14 oz !Good luck in what ever you try!!!!!!!!!God Bless u i will be 61 this yr to !
So, my experimenting while learning from these replies to my ? has actually become kind of fun! So far the most successful thing on the face has been a dry but hydrating shea oil applied before a 25%, shea butter moisturiser. My gp has given me prescrip cetraben...on Friday i collected it from the dispensary & will try it on the worst bits of my body dryness this week...
I too use the Mary Kay Extra Emollient Night Cream and a heavy cream which list as lotion in a bottle put out by a husband and wife team - the product is Indian Hemp & Haitian Vetiver with Neem Oil by Nubian Heritage - listed on the bottle too is "Anti-Infammatory, Moisturizing & Healing." I also alternate with using Apricot Oil, Massage oil(s), Grapeseed Oil and the Emu (Bird) oil, and Queen Helene cocoa butter - which is super rich, thick and satisfying. All of these and using combination concoctions of these has been very soothing and helpful in the Winter months especially over the last couple of years. I started mixing a concoction of creams and oils back in 1983 and wasn't diagnosed with Scleroderma, Raynauds, PAH and other complications until 2008, although symptoms were initiating 15 years prior. I am managing rather comfortably with constant diligence to be as comfortable as possible. It's a challenge at times. I use additional ointments including vaseline frequently to my hands and fingers because of the on-going battle with Raynauds, the coldness and splits that come to the fingers and hands. I continue to experiment with oils. Thanks a lot for sharing your efforts and experiences Barnclown; you have enlightened me to learn more. I appreciate and I hope my response too has helped. Everyone, hang in there and I pray for each of you. Working with our medical issues and trying to be as comfortable as possible is a full-time job within itself. Take good care.
Thelma, am vvvv grateful for your wonderful reply! I've learned so much that is really truly helpful from everyone who has replied to me question (.I also posted a similar on the HU lupus & sjogrens forums.)
Your reply confirms my impression that this moisturising business is all about conscientious trial & error + conscientious & responsive maintenance of a dedicated seasonal moisturising regime + about knowing our own bodies, conditions & symptoms.....and, because inevitably both we & our environments are always changing/evolving, it's about being open to new products & methods. Your contribution to this discussion is greatly appreciated....I'll definitely be checking out your suggestions! Sending every best wish to you
Hi There Barnclown: You and our Raynauds/Scleroderma Family are certainly welcome on the input and my experiences. We share a beautiful fellowship of sharing and caring; we continue to learn from one another, coach, listen and try to help one another along the way. We are blessed and we'll continue to grow stronger and we'll continue to comfort and encourage one another along the way. GOD bless you Barnclown. Have a good weekend.
You put it so well, Thelma. I'm thankful every minute of the day for this wonderful forum + my lupus UK HU forum + my Australian sjogrens HU forum. I've spent most of my life isolated & alienated due to autoimmune problems....only to find wonderful solidarity here in my later years: it's so wonderful I can't find the words to express this fully...but the words have come through you. Thank you. Take care. Wishing you & all here every possible best wish
Hi There Barnclown: Your response is heart-felt. I am very grateful to this wonderful tool of communications and bonding and I continue to look forward to us staying in touch with one another and our Friends out here on this website. I constantly pray or us and our website Family out here. Communicating and sharing positive vibes and hopes certainly helps to combat the challenges we go through with these medical complications, a lot better. It increases our faith, hope and diligence. Thanks so much for your kind words and I wish you a wonderful week. We will definitely stay in touch. Take good care.
My favorite above all for splits on hands and fingers is Zim's Crack Creme (the liquid spray ONLY). Spray on, rub in and cover with your favorite hand lotion. If there is bleeding or deep cracking, it will sting a bit. If cracks are severe, it will take about 48 hours to close them. Be careful not to snag the rough skin edges on your clothing. I wear gloves at night or simply a pair of tube socks over my hands with a little masking tape to hold them on. Nothing works like this spray and covering it with plain OTC lotion keeps it in place longer so that it can heal. I also use it in the daytime covered with lotion, being careful to trim off any loose skin that might snag on something. (I have even used it on my sore nose from sinusitis during the cold months.)
For me, it does heal in about 48 hours - meaning it closes the wound - even cracked and bleeding wound. Also, if you are using in nose and around the nostrils, it does have a slight spicy scent. I think it smells good, and I am on oxygen that causes my sinuses to be a big mess all the time both inside and just outside the opening from dripping and running nose. I am OK with the scent even though most scents are not appropriate for me. I have used this product for years and found that nothing works as well. Only the liquid spray version, though, not the cream.
Great advice...will tell my husband about this too...his cracks are mainly under control thanks to a regime he has figured out, but gosh: zim's crack spray really looks good! I have NOW googled it to try to find a source in the UK..but am only finding other cracked skin sprays...are you in the UK? Where do you get your Zims?
Topwabbit, I have so much empathy for all who suffer from splits and peeling skin on hands. I tried so many OTC ointments (including ZIM's) over several years. Much of the time I wore gloves to prevent bleeding on clothes, etc. The only ointment that made a significant difference in my hands was Urea Cream 50%. It's an ingredient in many OTC ointments and lotions, but the 50% strength does require a prescript. It was dramatically effective. I was finally diagnosed with sjogrens, scleroderma, and psoriatic athritis which was causing the skin issues. I'm now on methotraxate and my hands are beautiful !! The med has been around a long time so the price is very reasonable. Of course I pay an important non-monetary price in taking this med, I seem to catch every germ that comes near me so I avoid groups. The drug does have potentially more serious side effects so I have monthly blood tests, but so far, except for a lower immune system, I seem to be tolerating it well. The difference in my quality of life is quite amazing. I'll be very disappointed if I begin to have other side effects. The very best of luck to you.
Hi Barnclown, I use aveeno for my skin, in Scotland I get it on prescription free, used to spend £40 a month on it, I get shower oil, hand cream, skin cream and skin creamy oil. For my feet I use Dermatonics Once heal balm, again on prescription, its the one chiropodists use and is very effective. The gp prescribed Carbomer 980 eye drops, these don't nip at all, and glandosane lemon saliva spray. I use almond oil and loreal facial oil to remove make up and also as a moisturiser on my face. Unfortunately these cannot be had on a prescription, but I find them effective on me.
Wow, great reply: am vvv grateful: haven't heard of many of these items: will check them all out! Am especially glad of the tips re getting some on prescription! My husband is a long term fan of aveeno (his skin issues are related to crohns)...we're in the UK, so we'll see if the nhs here is cooperative on his behalf.
If you find something good, but expensive, go on the lloyds pharmacy website and type it in the search bar, it'll give you a list, and will say if it's available on prescription. If it is I write it down and go and ask for it at the doctors, I have saved a fortune doing this. Always worth a try xx 😊
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