sjrogrens and complications

[Gingerninjas]

Hi allHave had sjogrens for neck knows how long ,with lung involvement and gastric issues foo.

Also have fibromyalgia. Asthhma,osteoarthritis, CKD,

For a couple of years I've had flare up of gastritis ....despite being on lansoprazole,them impossible it didn't control the excess acid, along with this it completely knocks me off my feet, I have zero energy, no sleep, feel uncoordinated, sweating considering within mine of each other ,....never know how it's going to last for usually a couple of days to week!!! when it happens i swap to raberazole. I get griping bowel pain , use buscopan for that. Then polemics for when the diarrhoea starts.

Saw doctors today after last week's flare ....she's writing to my rheumatologist for advise .

Was wondering if you guys have any thing like this with your sjogrens???

[SjogrensinTexas]

Okay first I’ll say that I am. not a doctor or your doctor. This is my own experience. I have Sjogrens, Osteoarthritis, asthma, Hashimotos, and macular degeneration and am 63 years old. I see my Rheumatologist, GP and ophthalmologist every 90 days to monitor my progression and my insurance covers those visits. I take hydroxychloroquine and leflunomide for my Sjogrens. I also take two thyroid medications daily, Pantoprazoke and Famotidine daily 1 in the am and 1 in the pm for gastro issues, I also take Low Dose Naltrexone (2 mg) daily which has made a HUGE difference in the effectiveness of all my medications. I also do 3 hrs per week (excruciating but I do it anyway) of weight bearing exercise weekly and get a 90 minute deep tissue massage weekly. If you can’t afford to do that weekly do it as often as your finances allows. It makes a huge difference in my overall regime. Stress is a huge factor and managing that stress and getting enough quality sleep is the difference. My prayers are with you. Keep us posted.

[Gingerninjas in reply to SjogrensinTexas]

Thanks for responding …you have a good plan in place .

. I swim x2 a week , massage once a month , see my rheumatologist once a year,.ophthalmologist once a year , doing my hobbies helps reduce stress … it’s all good until I get a gastric flare 😱. After a few days life is back to normal … then it’s back to doing everything 😃 take care in Texas .

[OldTed60]

hi there. My story is a bit extreme for Sjögren’s but just saying in case it helps.

Yes I have had many years of severe gastritis - initially I blamed on medications and being very overweight plus chronic constipation. Had several endoscopies both ends which showed gastritis and gerd but nothing obstructive. Had a barium swallow some years ago and nothing showed so all blamed on (seronegative) Sjögren’s dryness with IBS-c and hypothyroidism. I also have severe Raynaud’s and Erythromelalgia.

Then, just before the pandemic, things escalated and I was doubled up with pain with a couple of A&E trips during the night. A new rheumatologist found I had a single stand alone antibody for scleroderma. But couldn’t diagnose without classic skin tightening changes so just became overlap ctd Sjögren’s predominant (they hoped).

Chronic cough was blamed on silent reflux so upped my dose esomeprazole and it helped but pain got worse in my gut and laxatives only worked unpredictably. I tried everything during first part of pandemic including AIP diet (self diagnosed low stomach acid), 100% gluten free, high fibre as strongly advised by a colorectal surgeon over the phone . Finally lost so much weight unintentionally I was referred by my rheumatologist for a gastric emptying scan which showed severe delay so Gastroparesis. Then the pelvic floor surgeon referred me for colon transit study X-rays a few years ago and Proctogram. Showed severe delay too and also rectocele.

Finally saw gastro who said not IBS but SIBO so on an antibiotic called Rifaxamin and a mostly liquid/ soft diet with Ensure plus. Stoma and gastric pacemaker both being discussed but am on Mycophenolate so they take a conservative approach so far. Gastroscopy 2 years ago showed it has progressed to polyps and a hiatus hernia as well as gastritis now.

Finally travelled to see a a scleroderma expert a few months ago and he diagnosed systemic sclerosis and EDS as well as my lip biopsy positive. Will never likely know which condition is causing the severe GI involvement but my scleroderma antibody certainly points that way. But Sjögren’s and EDS definitely contenders too and certainly make it worse. I avoid acid foods, fibre, gluten, fat and most of all, all sugar apart from one banana milkshake daily for calories.

[Gingerninjas in reply to OldTed60]

Thanks Ted , it certainly seems a persons best friend Is the rheumatologist 😃

That’s a lot of history you have ….

This autoimmune shit is crap 😩

[OldTed60 in reply to Gingerninjas]

Yes - to all your surmises - in my case at least. But from long experiences with all this and different rheumatologists previously - they aren’t always a person’s best friend at all. Some have found gold star gastro’s, neurologists, dermatologists or ENT, oral medicine or other to be much better. A lot depends on where and whom you land. In my case all my consultants are pretty fantastic now but it wasn’t always so by any means 😊

[weathervane]

hi Gingerninjas , i have had Sjögren’s for years and have had some stomach issues, possibly triggered by rituximab treatment.

I have had severe reflux at times , i take lansoprazole with gaviscon advance added in when it’s bad. I find sitting up in bed is also a big help, with lots of pillows.

I have also have ibs which is usually under control, i did go through a patch when had bad stomach pains at night with sweats, had tests done and diagnosed with diverticulitis. I now avoid too much onion , i use powdered garlic and i avoid cabbage. This seems to help as these foods can trigger an episode.

I hope you can see a gastroenterologist which might help with diagnosis, also talk to your rheumatologist or rheumatology nurse for advice, best wishes 🤗