Recent diagnosis of Sjögrens.

[Bayli]

Hello from 🇨🇦

I have been recently diagnosed with Sjögrens. I also have Afib, osteo arthritis, osteoporosis, fibromyalgia and IBS.

I'm hoping to find answers for these questions that I have:

1) If you have neuropathy...what do you take to help with the pain?

2) I'm not even sure how to describe this symptom....my hand and feet feel like the skin is getting thin. Super sensitive to hot or cold water or to drying your hands with a towel, wringing a dishcloth? And my lips feel really strange too..almost like a really bad case of chapped lips, but they're not. Sometimes I think the skin may be getting thin as well.

3) Lastly, has anyone ever tested positive for the anti Ku antibody? This blood test is part of a myositis panel. It is often seen with overlap syndromes.

Thanks so much for your help. 🙏❤🌻

[smileyface1]

I have thin skin and I have Raynaud's Syndrome which makes me get cold easily and turn blue or white. I wear gloves a lot. I also have arthritis and really dry lips and eyes. I use Aquaphor cream for my lips and hands or body. I am not aware of the blood test you mentioned (anti-K antibody).

[Bayli in reply to smileyface1]

Hi smiley face 1, thanks for replying. So far no signs of Raynaud's. I'll check out the cream that you suggested. First time I've heard of a cream that you can use all over your body, including lips! Interesting!

Actually today I was so uncomfortable with the sensation on my lips when some of the nose spray ( I use Rhinaris Nozoil) was dripping out of my nose and as I went to wipe it I got some on my upper lip and it greatly eased the discomfort. That being said, not sure that nose spray would be ok to use for your lips! Its almond based I think...but still.

My rheumatologist ran a myositis panel that checks for all these very specific antibodies. The anti Ku is a rare antibody that is often seen with overlap diseases and my family doctor thought that it could be scleroderma, because my results were very, very high. But in my case the skin is not thickening, it's just getting super soft and feels thin. And it looks like my hands are somewhat shiny....I'm going crazy with all that's happening!!

Take care ❤🙏🌻

[Deniseelk in reply to Bayli]

I have RA and my hand can get shiny and sometimes itch but for me this occurs when I have inflammation in there. Also, my Rheumatologist looks for a “ sponginess “ by gently pressing the area it moves quite differently than an area not inflamed.

[Georgiab123 in reply to smileyface1]

I’m the same not one thing just everything

[Hidden]

Yes I have Sjögren’s and Overlap connective tissue disease. I have Raynaud’s, small fibre neuropathy and Erythromelagia (rare) plus telengecstasia and silent reflux. The backs of my hands are becoming increasingly shiny - but thick not thin and so itchy.

Even my dermatologist didn’t seem to know what this was so she gave me Elocon cream for eczema. I’m none the wiser really as my rheumatologist had been redeployed to critical care for the CV19 pandemic. My guess is that I also have limited Scleroderma but no one has said this - I’m just guessing.

[Bayli in reply to Hidden]

Hi Twitchytoes, thanks for your reply. I was first diagnosed with UCTD. You too? And then i was diagnosed with Primary Sjögrens. And that's when she told me that I no longer had UCTD, but that it was very possible ( like so many ) to develop another AI disease, much to my chagrin!

I looked up Erythromelagia....sounds like it could be very painful! Telengecstasia is spider veins? But not painful right? I have some on my legs too.

My hands aren't itchy. Just wish I knew what causing all these symptoms. And I'm not on any meds for the SS. She had originally prescribed hydroxycholoquine, but when I got the prescription filled, one if the pharmacists called me at home two days later to tell me that there was a Level 2 interaction with one of my heart meds (Flecainide) , but because the interaction would be to cause arythmia, which is what I already have, then it becomes a level 3 interaction, which is the highest one! Must say, I wasnt too impressed!! And I'm not in great shape right now, exhausted and in so much pain, especially my burning feet.

I was diagnosed on March 13 and have been waiting for my team of drs to figure out what they can do and get back to me. I have to say that I'm a bit nervous about getting off the Flecainide to put me on another heart med if that's what they decide to do, cause I've been on it since May 2019 and it seems to be helping with the Afib. Always something!❤🙏🌻

[Hidden in reply to Bayli]

I was initially diagnosed with RA in 2011- already had Hashimoto’s. Then 4 years later I relocated and was rediagnosed by lip biopsy with primary Sjögren’s. Now they hedge about the primary thing but basically the thinking is that most with Sjögren’s find that it stabilises so can be managed with topical treatments and Hydroxy. But with mine they are conceding that it’s progressed to meet full diagnostic criteria of others, mostly limited Scleroderma (used to me called CREST). The telengecstasia of this condition aren’t like common spider veins of ageing on legs - they are red spots on face, neck and hands and are quite particular to CTD/ CREST.

What a hard one about your heart/ AF. Why can’t they offer you a different disease modifier (DMARD) rather than change your heart med? Hydroxichloraquine is now being used for prevention and treatment of Covid19 so supplies are running out in some areas apparently. It gave me a slow anaphylaxis so I had to stop it but have just gone back onto Mycophenolate - an immunesuppressant - after 2 years off everything.

With the overlap CTD progressing to include shiny skin on my hands and flaring all the time I felt that I wanted to get back on treatment. Timing not so great but I’m self isolating anyway and my immune system feel like it’s attacking every pore just now! I’ve taken it before but was taken off it abruptly when I developed a tremor. It turns out that the tremor is familial benign essential and just me!

[Bayli in reply to Hidden]

Yes I heard that about the Plaquenil. I was.on it years ago because I would break out in hives/welts all over my body after being in the sun for a little while. Then I got off it and I was ok for many years and then two years ago we went to the Carribean and it started again. She said that that's what is usually prescribed, blah, blah blah...not sure and I think I was in shock at hearing that the lip biopsy was positive, that I didnt even think to ask . But I will be calling again tomorrow since I still havent heard anything since March 13. Thanks for taking the time to explain the telengecstasia....much worse than spider veins.... I will ask the rheumatologist when I see her again about the hands and the fact that they're shiny feel weird. Good luck with re-introducing the Mycophenolate. May it ease your pain.❤🙏🌻

[SusieW2]

I find that when my lips get the chapped, peeling condition its because I've eaten too much acidic food. It can get painful when it gets cracks. I've found a homeopathic remedy that calms them right down. It works on sores in my mouth and gums as well but can take a bit longer to heal. I may have to take 3-4 doses over a day. It's call Natrum Phos and is just sodium phosphate. I get mine online at 1-800homeopathy. Good luck with all of your symptoms.

[Katerina1]

Hello Bayli, I have Sjogren's which has resulted in very painful neuropathy. Legs and feet are the worst particularly at night. The most helpful for the pain is Pregabalin. Sometimes take small amount of codeine when it's really bad. Also use cool gel pads. Some people find Gabapentin helps but it didn't do anything for me.

Your skin sensitivity could be the result of neuropathy. Since developing Sjogrens my skin is thin and papery in places. Sensitive too.

Hydroxychloroquine made my throat swell so I can't take it.

I have IBS too. Find it harder than the Sjogren's due to unpredictability when I am out.

Hope you manage to find some pain relief.

[Bayli in reply to Katerina1]

Hi Katerina, sorry for the delay in getting back to you. I have been on the two meds that you mention for fibromyalgia and unfortunately did not tolerate either of them very well. The skin sensitivity and thinning is so frustrating at times. Thanks for your help and suggestions. You take care of yourself. 😊

[Hidden in reply to Katerina1]

I think IBS is actually the Sjögren’s for many of us rather then being some separate condition. I have same problem with unpredictability and was told it’s related to my body wide small fibre neuropathy and autonomic issues plus dryness throughout the digestive tract.

[Bayli in reply to Hidden]

Hi there, yes I'm beginning to think the same thing. And I think that I dont have fibromyalgia, it was probably Sjögrens all this time.

[SusieW2 in reply to Hidden]

Yes! I have digestive issues, eczema from high acid and some other foods, get sores in mouth from some nuts and dryness from SS. I think they are all related to a generally overactive immune system that manifests differently in each of us. I think arthritis, not related to an injury, is included. The common issue is inflammation. So that's what I focus on.

[Bayli in reply to SusieW2]

Hi SusieW2, yes, reducing inflammation is so important.