Hi does anyone else have red palms and sjogrens?
I feel the two are related. I have noticed that when my palms are really red my sjogrens symptoms are really bad but I can’t find any information connecting the two.
I’ve added a photo but the flash muted the red they are actually beetroot red.
Hi, yes I get red/purlpe & mottled palms, just like your picture, so obvious to any one!!
Yes its worse when I'm having a flare although I was told many years ago by my gastro specialist that this was an indication that my liver was struggling.
Interesting I’ve had high liver enzymes on and off but no ones been able to say why.
I’m not convinced it’s my liver I think it’s definitely related to sjogrens because of the increase in symptoms when my hands are really red.
It will be interesting to see if there are others who have the same! Thank you!
I can't say if it's related but I'm really interested to see your post. I suspect I have sjorgens although none of my results are definite. I've had dry itchy eyes and nose, weird gastro problems and a host of other strange, weird symptoms for several years now. I get those red blotchy palms too (I have them now) and am wondering if it's yet more indication of Sjorgens. I've stopped going to doctors as I'm sick of being looked at as if I'm a hypochondriac or just off my tree.
I took a year off from doctoring myself. Its so frustrating to be told that your tests are normal and there's nothing or very little wrong with you. Yet you feel crappy and listless and not yourself. And I did some research and found some alternative medicine providers including a Naturopathic MD. Now I focus on natural treatments for my most scary symptoms and a few prescriptions that support my systems rather than medicate me.
Try fish oil and eyelid cleaner for your dry eyes and a very good probiotic and a food elimination diet to determine what makes you gut work better and what makes you feel bad. Yoga and chiropractic do a lot for me.
I feel like this too as my blood test have been normal but had very very dry mouth for a year my tongue is all cracked as it gets stuck to top of my mouth the nurse practioner laughed and told me to suck sweets. But Rheumotologist I saw privately has said she wants me testing for Sjogrens so has referred me as NHS patient but am still waiting but my hands go red like the picture so now other people have the with sjogrens I think it possibly will be that
I use the following in flavoured water recommended by top sjogrens specialist in U.K. and also use xylimelts tablets which you stick to your gums. Try both ASAP and your mouth will heal pretty quickly but if like me you will need them all the time. Good luck hope you get sorted soon x
Hi...I have Sjogren’s Syndrome and have exactly the same bright red marks on the palms of my hands. They get hot when SS flares. I can’t find anyone to advise me on what causes these changes. My GP definitely thinks it is linked to SS ......
Does anyone out there have an answer?
I have been told it is Raynaud’s syndrome which is secondary to sjogrens. I especially get this when it is cold - but not always. A SS flare will bring it on. I lose feeling in my fingertips.
Hi thanks fir the response.
I have been told it’s not reynauds syndrome. People with reynauds get white fingers like in the link below. Mine is not like that.
sruk.co.uk/raynauds/what-ra...
Kindest regards 😀
I may have a combination? - yay!! I definitely get the yellow/white finger tips but my palms are also compromised. Just knowing that it is a "thing" is helpful in understanding why I am falling apart.... Good luck to you. This site has been helpful to read of the dilemma of others on this journey. Blessings!
I think it’s the RA side of Sjögren’s myself because I too get it during flares - presently affecting right hand knuckles and right palm exactly like this photo. My hands are really sore just now and I do also have Raynaud’s and small fibre neuropathy with my SS. My fingertips are sore and area surrounding a few nails are red and puffy. Hands are both tight, painful and stiff presently and everything is in flare so although I don’t have RA I was initially misdiagnosed with this so I recognise it’s secondary to my SS.
Raynard’s tends to cause redness on hands - I am heat and cold sensitive from Raynard’s and my body temp seems to not adjust to changes very well - especially the extreme temps - I also think my Fibromyalgia plays into things also ... 😊
Hi,
Just saw this. It's nothing to do with Reynauds. Its to do with your liver. I have this and although i'm at work and my Drs letter is at home I will reply with the actual name for it.
I have Sjogrens however I also have PBC with AIH crossover. So it maybe worth getting your LFT's checked.
It's usually a sign something is going on with your liver.
Hi Rosserk,
I have COPD and an underactive thyroid, used to be overactive, also have Graves Disease. I suffer from the same symptom and have never been able to decide what causes it. It's quite embarrassing having bright red palms!!
Hi thanks for the response!
I see Dr Price tomorrow she’s the top sjogrens specialist in UK so hopefully she can say if it’s Sjogrens. I will post again tomorrow xx
Thanks I will look forward to your next post. Whereabouts in the UK are you?
I’m in the Midlands Hereford
I know you say its not raynauds so I am really interested to find out what it is as Ive had similar for years. I have lupus, sjogrens and what I was told was raynauds. Mine arent affected by heat or cold they create their own temperature regardless of what the weather is. Could be freezing outside and my hands and feet are boiling or vice versa. Ive had my hands and feet go red, white, purple, hot, cold, sweaty etc within minutes of each other. Same as the crown of my head and Im not at menopause stage. Its really annoying. I have peripheral neuropathy too though in my legs so perhaps its a symptom of that? Who knows. Hope you find your answer soon.
I have mild SS and had eczema until I learned how to (mostly) control it through diet, exercise and stress relief. I've always associated red palms with an allergic response. I react to highly acidic foods for instance. If I eat more than a little bit, I get the red palms as well as the itchy, bumpy eczema reaction with the stiff joints of inflammation.
I have friends with scleroderma. It is also considered an inflammatory disease. They get white fingertips and lose feeling in their fingertips eventually. Their hands feel cold a lot, too. Symproms vary a lot as in Sjogrens. It is very important to get an early diagnosis of this. Someone else mentioned some of these symptoms in this thread which is why I mention it here. So just FYI:
"How is scleroderma diagnosed?
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.
Who develops scleroderma, and when?
It’s estimated that about 300,000 Americans have scleroderma. About one third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult. There may be many misdiagnosed or undiagnosed cases."
I believe that many inflammatory diseases and/or those the that medicine finds hard to understand, are interrelated rather than separate occurrences. Some of us are more or less susceptible in varying systems in our bodies.
I might also recommend: The Autoimmune Fix: How to Stop the Hidden Autoimmune Damage That Keeps You Sick, Fat, and Tired Before It Turns Into Disease by Tom O'Bryan and The Inflammation Solution: When Everything Works and Nothing Hurts Paperback
by William Sears MD
Hi all, sorry for the delay in reporting back about my visit to Dr Price but I’ve had a death in the family and couldn’t motivate myself to do anything. I’ve got a few minutes spare so I will give everyone a quick run down.
Dr Price was lovely very knowledgeable and extremely understanding.
She is prescribing Mycophenolate and some different eye drops, she said the drops I was given were less than useless! She’s also prescribing something else that begins with a P but can’t for the life of me remember what it is! If I remember I will update!
I haven’t t had my consultation letter through yet so haven’t got my prescription yet! She said the red palms were likely due to liver problems because I’ve had several results where my liver enzymes were raised which could be caused by sjogrens attacking the liver but she couldn’t be sure.
She gave me two really good pieces of advice the first was to get an eye mask that you put in the microwave. You have to use I at least three times a day to start with for a minimum of seven minutes, she was very specific about it being no less than seven minutes. I bought one straight away and it’s amazing my eyes are so much better. It’s supposed to melt the natural oils in the eye which then lubricates the eyes.
The second was xylitol natural sweetener to add to water which helps to stimulate saliva and also works brilliantly! My mouth which is usually red raw and feels and looks like it’s been through a cheese grater is 100% better. It doesn’t cure the dryness but it prevents it getting raw. You can buy the eye mask and xylitol from Amazon. She also advocates using xylimelts, which I was already using.
Until I start all the new medication I won’t know how successful the treatment is but I am really hopeful. 😁 I will update again when I start the meds! Hope everyone is doing well!
I have just been informed that he’s refused to prescribe medication recommended by Dr Elizabeth Price! I am beside myself I had to pay to see her privately and now my GP won’t agree with her advice and there’s nothing I can do. I am devastated! So my visit to a specialist was a total waste of time!
Hi. This is unbelievable! Your GP won't prescribe mycophenolate and doesn't accept her dx??? I thought there was an unwritten rule that GPs should act on the advice of (any) specialist. Personally, I would complain to the practice manager and/or find a better GP. Please let us know how you get on. xxx
Thank you I am devastated I was diagnosed with sjogrens three years ago but looking back at my medical records I had ANA’s long before anyone said anything! I was diagnosed with an under active thyroid 2 years ago and It’s likely sjogrens effected my thyroid.
I was never given any medication until last November when I begged them to prescribe hydrochloroquine.
The receptionist said the Doctor was checking the drugs list to see if they were allowed to prescribe Pilocarpine he said I have to wait to see if an ophthalmologist agrees to prescribe Cyclosporine and hylo tears. I have an appointment but it’s not until the end of August and my eyes are really really sore. I was due a foot op but they’ve postponed it until I have new scans in July and he won’t prescribe Mycophenolate until after that’s resolved! I don’t know what to do I can’t believe I paid all that money to see a specialist and it was a complete waste of time! I was going to call sjogrens society for help. I also thought about contacting Dr Price to say he’s refused to prescribe but I’m going to wait till he gets back about pilocarpine. 😭😭
Hi. I do think your GP is negligent. I would ask Sjogren's society and Dr Price for help, as this is just not on. And what about your abnormal liver tests? Is GP going to ignore this too? I've got sicca and other AI syndromes (awaiting test results at next rheumy review) and I either have UVeitis or my moiben (?sp) glands have stopped working. Either way, I have very sore inflamed eyes for which my GP prescribes an assortment of lotions and potions. My optician offered to prescribe them - but at a cost! - they are free from my GP as I'm over 65yrs. I don't think pilocarpine is a good replacement for mycophenolate, but perhaps I'm wrong. Seriously, I would complain big time - and find a better GP. Please let men know how you get on. xxx
Dr Price advised him to prescribe pilocarpine and mycophenolate. The receptionist said she’d send a message to the Doctor and get back to me when he responds. I’ve been waiting all day and heard nothing he’s done this before when he refused to increase my thyroid meds I had to switch to NDT which I have to buy from Thailand.
I tried calling the sjogrens society but every time I call it’s an answer phone message. If I don’t hear anything today from my Doctors I will call again tomorrow and if he still says no I will contact Dr Price.
A private prescription from her would cost me 80 pound a month and that’s just for pilocarpine. I can’t afford that
Hi. You shouldn't have to pay for the private prescription. I'm a member of the Lupus site on HU and I find them very helpful. Perhaps it would be worth contacting them for advice? Your GP is well out of order, in my opinion! Please let me know how you get on. xxx
One of the other Doctors at the practice agreed to prescribe pilocarpine the pharmacist has had to order it and I can collect tomorrow. Dr Price wrote me a private prescription but she said I would have to pay for it and it would be really expensive. She only did it because I didn’t want to wait for her to write to my practice before starting it she gave me the script and said it could cost me at least £80. I get all my prescriptions free because I have Hashimotos so I decided to wait rather than get the prescription.
Great news about the pilocarpine. xxx
Yes ! I have the same thing. Red blotchy palms !!
I have the very say
Same
Mine are worst during a flare. If I feel rotten I look at my hands and they are really red! Told several Sjögrens doctors but always dismissed!
I have hands that looks like that and am Rheumotologist testing for Sjogrens even though the blood test is normal but have very very dry mouth and hand bad stomach
I am now hundred percent confident the red palms are connected to my Sjögrens because if my palms are red I’m suffering badly with dry mouth and sore eyes. Sjogrens showed up on my blood test x
I have Sjogrens and I get red mottled hands a lot, but I have also been diagnosed with cold, pressure, and vibrational urticarias. When I ride my bike and hold the handle bars on a rough road, my palms will react and go red. It's my immune system over-reacting. I don't have any issues with my liver at this stage.
Hi, I don't have the red palms but I wondered if anyone could help me with symptoms of Sjogrens, please? For about five years now, I have suffered firstly with a dry mouth which has now turned into a major problem for me and I have been told I have to have all my teeth removed and I am devastated, to put it mildly. I also suffer from very dry eyes and I have special drops for them. I also have a major rash on my scalp which drives me crazy and also the skin on my face is subject to breakouts all the time. Now, I am not a young woman. I'm 80 years old, unbelievably. I certainly don't feel like it but this Sjogrens is driving me mad. I've had a test from my GP who told me yes, I tested positive but I don't have all the signs of it. Yet, here I am, now having to have all my teeth out and it's going to break my heart - and all these other symptoms - yet the GP still maintains I don't have ALL the symptoms. I live in a tiny town in the country in NSW, Australia, nowadays and there is only one GP in town. Does this sound like Sjogrens to any of you?
Absolutely sounds like it to me.
I am also about to lose at least 8 of my back teeth. I am 59 and devastated they have always been my crowning glory! I won’t be able to have dentures as they would irritate my gums due to a complete lack of saliva so I am busy saving for implants which are nit cheap in the U.K. implants are not available for Sjogrens in the U.K.
Have you tried xylimelts? They are a life saver and work really well. I see they sell them in Australia.
Oh, I feel for you. I have nice teeth, too, and I've always tried to go to the dentist regularly but over the last two years, I've had one health issue after another and have tended to neglect them because of seeing to other health issues. I've gone deaf in one ear, I have developed Meniere's Disease so I'm always dizzy, I have very dry eyes and am having needle in eye treatment which is horrible but I'm trying to be stoic about it all. So the dentists were pushed to the back and when he told me a couple of weeks ago that they would all have to come out, I couldn't cope. Anyway, I'm going for a second opinion to another dentist and will lay it all out to him and see what he thinks. Anyway, thanks for the tip about implants. I probably won't be able to afford them, either, but I will see what they say when I go back to this other dentist. Good luck with your problems. Phew!
My hands and feet get like this. My Rheumatologist and Family Doctor recommended seeing a Dermatologist (she couldn’t find anything wrong other than very dry skin, she said) I have found when I’m having a flare it’s ALL worse. I have stopped seeing Doctors for the time being.
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