Need help: Been told I've got raynaulds that there... - LUPUS UK

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suemac profile image
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Been told I've got raynaulds that there's no test or medication for it also suffering dry eyes and very dry mouth but its not diabetic cant see a doctor at my surgery you have to see a nurse unless your on deaths door I also asked for a mineral and vitamin test but they don't do it at wits end no one to talk to hubby not interested not back at deems till October any help please apprieated

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suemac profile image
suemac
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7 Replies

can get gel tears etc for dy eyes and artifical saliva for mouth,, you can buy both of these from a pharmacy.. salivix is one brand of artificial saliva and the cheapest there are others which are however about £8-10 and the gel tears about £5

MaryF profile image
MaryF

Hi there, get checked out to see if you have Sjogrens. Mary F x

I would change doc...my whole life changed when I changed doctor

Xxx

Chris21 profile image
Chris21

There is medication for raynaulds, I'm not on anything yet, but my consultant has offered. The name doesn't spring to mind at the mo, but it widens the veins to help circulation. I have a spray for dry mouth and gel eye drops for dry eyes, both on nhs prescription as I've sjgrens. Have you asked to be referred to rhuemotologist? X

EOLHPC profile image
EOLHPC

consultants do prescribe vasidilators like nifedipine for raynauds, but take care and report any bad symptoms right away: i have simultaneous erythromelalgia & raynauds which nifedipine was very bad for, had to stop after 3 days and maybe should've stopped even faster

best info & tips on raynauds i've found is in the raynauds & scleroderma assoc website, and they have a great forum here on healthunlocked: see the drop down list of communities above. this forum is as great as ours is here

maybe i can help a bit re eyes: i am being treated for 3 dry eyes problems here at our nhs eye clinic. my consultant is fab, and much more up to date on best eye drops & nightime gel makes. he also got me to get an 'MGDRx eye pad' from amazon, which goes in the microwave or oven and is used daily to get your eyelid glands fuhnctioning better, which really helps dry eye along with these 2 Rx (your gp can prescribe them for you is you explain why):

hylotears (sodium hyaluronate 0.1%)

artelac night time gel (a million times better than lacrilube, which my rheumy prescribed for me originally)

i agree with maryF: you need to consider discussing sjogrens with your gp & rheumy, but you may be at the 'sicca syndrome' stage of sjogrens (this means you have all the dryness issues in eg eyes, mouth & upper gi, nose, vagina, skin generally etc)

in my experience, it's very important to try your best to eat an aniti-inflammation diet when you have this dryness, and if possible take omega and D3 supplements too (even my eyes consultant urged me to do this - and if you google dry eye conditions you see this recommended a lot)

whatever, like steadilymf, my whole life changed when i got onto a good sle experienced rheumy and an interested & compassionate gp

wishing you all the best, take care

EOLHPC profile image
EOLHPC

PS probably i should also have said: there is a great sjogrens forum here in the health unlocked communities listing too...it's the autralian sjogrens syndrome association

gazorpf profile image
gazorpf

Raynaud's is a misfiring of the nerves that control the small blood vessels in the feet and hands. In cold or under stress, the fingers become while then a purplish color. As the blood returns the become red, painful, stiff and swollen. The best treatment is to keep your extremities warm and learn to manage stress. Vasodilators can help in extreme cases. nlm.nih.gov/medlineplus/enc...

The dry eyes and mouth most likely come from Sjogren's syndrome. Raynaud's and Sjogren's are separate conditions but frequently occur in overlap with lupus. Sjogren's is often treated with hydroxychloroquine, artificial tears, and non alcoholic mouth rinses. sjogrens.org/

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