Scleroderma for zinc, marine cream and small mouth

Hi Everyone, I have had Scleroderma and Raynards for about 6 years now, and still some other pain in the body will show up next day, do not want to take anymore tablets that I already take and I go for all the tests they send me to. Three questions : Is Zinc good to take, any suggestions for small mouth please and does anyone use this Marine cream ?

Regards

Nancy

10 Replies

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  • hello Nancy, I am by no means an expert so you are just getting my amateur ramblings to your questions but here goes: 1. Zinc - The body needs zinc for normal growth and health, but of particular importance, especially for people with scleroderma is its role in wound healing and the way the body fights infection. You should be getting enough zinc if you eat a varied diet but sometimes people with scleroderma don't absorb nutrients as effectively as 'normal' people...also if you take medications to reduce heartburn such as Lansoprazole or any similar then they can reduce this too. Zinc is found in various foods, including lean red meats, seafood (especially herring and oysters), peas, and beans. Zinc is also found in whole grains; however, large amounts of whole-grains have been found to decrease the amount of zinc that is absorbed.

    2. For a small mouth - Moisturise, daily exercises, singing, shouting at people who irritate you ;), facial yoga (particular the lion exercise) have a look on You Tube and lots of wide smiles. Anything to keep the opening as large as possible!

    3. Marine cream seems to be an anti-ageing cream? I see Elemis do it? Is this for a particular area of skin? I think that you should ideally find that your GP or a dermatologist would be able to prescribe you a good quality moisturiser. I have found over the years that the cheapest on the market...good old aqueous cream is just as good as more expensive stuff. I use Liz Earle products on my face because they seem to suit my sensitive skin but we are all different of course.

    I hope that helps a little bit. All my best Lucy

  • Hi Lucy

    Thank you so much Iv been going round looking like a Lion all afternoon silently growling, I live on my own so I can't shout at anyone, but the thought of a few horrors does the trick. I am at the Doctors tomorrow so will ask for Zinc, the only cream I use is prescribed which is Eperderm its good but it does not do nothing for small mouth. Anyway thanks so much for your information, unless you have Scleroderma talking to people even Doctors cannot understand.

    All the best to you Lucy, regards Nancy

  • What is a good solution for mouth ulcers and side of mouth cold sores I have tried zovirax and bonjela, as this is scleroderma again, and they last for days. please please

    Nancy x

  • Hi Nancy, Can I ask have you got a good GP or Rheumatologist you can discuss this with? Mouth ulcers can be due to a number of things. for example they can be related to your condition...ie. they are an example of inflammation happening in your mouth, but this tends to be more typical of Lupus than Scleroderma...or they can be due to medications you are on. For example, I get mouth ulcers from taking methotrexate if I am not regularly taking folic acid. I also have a delicate lining to my mouth so I can get ulcers if I eat sharp things that scratch the lining e.g. nuts, crackers and the like. They can also be a sign that you are run down and not getting good nutrition from your diet. I think particularly B vitamins and zinc. Your dentist is always a good point of call too. Mine tells me that Bonjela is rubbish and a salt water wash is the best thing. There are also a number of things that your GP can prescribe...such as a Difflam mouthwash and steroid washes if the situation is really bad.

    I am not very well versed with Cold sores, but again they tend to appear when you are run down, stressed or immunosuppressed. My colleague swears by the Boots own preparation for cold sores. she says that Zovirax always makes them worse for her. Again...I think GP or Rheumatologist is a good place to start your discussions so you don't keep on suffering.

    All my best

    Lucy

  • Thanks so much for your advice Lucy

    regards

    Nancy

  • This is really scary to me .i just been.diagnose with sjorgens ..and scleroderma. ..so sad . HELP😞

  • Hi Stanley there is no need to be worried or scared about a scleroderma diagnose and there is a lot of support and help available. The Scleroderma Society has a whole page on being newly diagnosed with frequently asked questions being answered by a scleroderma specialist. You may find the site useful: sclerodermauk.org/newly-dia...

    They also have a great little animation to help explain the condition to friends and family: sclerodermauk.org/what-is-s...

    All the best x

  • Hello Stanley, I think you have come in on the end of an exchange between Nancy and I. You might want to post your 'post' on the main site to get more responses.

    I have Sjogrens and Scleroderma. What is it that you are particularly terrified about? What type of Scleroderma is it? What do you what help with? All my best Lucy

  • I have Scleroderma/Polymiositis and my mouth was shrinking but with my medication and regular facial exercises I keep my mouth from shrinking. I notice whenever I start to have problems with my muscles and need steroids then my mouth begins to get tight again.

    You can get facial exercises from the Internet but when I went to see Professor Denton at the Royal Free Hospital his nurse gave me a leaflet with exercises which help a lot. Maybe it is possible to contact the Royal Free and ask them. They are very helpful

    I hope you get some relief soon.

    Take care.

  • Thank you Irene

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