Sjogren’s Syndrome – Introduce yourself and meet others

Hi everyone. I am curious if there is anyone in this group who was diagnosed with Sjorgens from a young age and how it has affected you. A little about me ... I am 22 now but have been diagnosed with Sjorgens since I was 13. I have always dealt with dry eyes, dry mouth, joint pain, fatigue, and brain fog. In the last few years, I have noticed these symptoms worsening and even dealing with other (new) symptoms that I usually don't experience. At the same time I was diagnosed with Sjorgens, I was also diagnosed with celiac, intolerance to fructose/lactose, ITP, Undifferentiated Connective Tissue Disease, GERD, and a few other health issues that have made it challenging to cater to my Sjorgens. Because of my GERD and past ulcers, I have not been taking medication for any of my health issues, as I tend to vomit them right back up. Recently, I have been debating trying hydroxychloroquine again, as that's what I was taking at the beginning of high school. Does anyone have any issues with digesting medication? What do you do?

Don’t have the lip biopsy if you don’t need to. It’s painful

Gosh, you really have a hard row to hoe. I don't have anything like that. I came across my diagnosis at a much later age (70s) and I suspect it is very different for us older set. Remember, Sjogren's isn't an invader. It is our own body attacking itself. It is easy to lose sight of that day to day. I am on IvIg which is very expensive but Medicare does pay for most of it . Because of that, my rheummy took me off plaquenil. And I take 5 mg prednison, from my neurologist who is very knowlegable about Sjogren's. (I am low corisol anyway.) I have small fiber neuropathy, often caused by Sjogren's and if I can stop being "clumsy", my life will be better. Good luck to you on your journey. Learn all you can about the immune system. It is hard to guess what will help.

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@hannahbernard1 Wow that was a young age to find out I was in my early 40’s I went to the dentist and asked about my tongue being white all the time and he said he knew what it was because his wife had Sjogren’s so I had I believe blood test done. Having dry eyes I tore the tissue on my eye, dry sinuses , itchy skin. I just seen the GERD Doctor today I can’t wear my cpap because I wake up choking from the acid, I need esophagus surgery to tighten that sphincter at the bottom of the esophagus. I’ve been taking meds for it since 1998 . Make sure the head of your beds elevated, I was at one time using papaya enzymes from the GNC store which helped until I had a bad spell and the doctor put me back on medicine. For the dry eyes my Optometrist prescribed Miebo it’s an oily eye drop so it helps lubricate and then I use a gel drop at night before bed

Thank you for the reply! I have recently elevated my bed as I was frequently waking up, also choking from the acid! It's very scary; I'm sorry you have also experienced that! Something I have found beneficial for my GERD is Prilosec. You may already take this, but in the morning, before I have breakfast, I take Prilosec, and it seriously changed my life! I went from 160lbs to 80lbs in about seven months because my GERD was so bad. After taking Prilosec religiously for about two months, I have been able to eat and keep everything down! It sounds like we have had some similar experiences, though, as I recently tore the tissue on my eye as well. Doing so is very painful! I will need to try the gel drops you mentioned!!

@hannahbernard1 I was on nexium for years, tried Prilosec, been on Omeprazole in the morning for a couple years and now also take pantroprazole in the evening . Sad part I tore the tissue on my eye the week of my 40th birthday and 2 years later my wife turned 40 and was wrestling my son and his toenail went across the same eye as mine , the eye doctor said that was a first having husband and wife with the same issue. I’m dealing with a failed back surgery and spent 4 months sleeping in a recliner since I went to Mayo Clinic I had to find someway to sleep so I was able to sleep on an air mattress which makes it hard to elevate my head.

Oh wow, best wishes to you while you heal. I am so sorry to hear of your troubles!

So far, I have only used Prilosec as a long-term medication for Sjorgens but have tested steroids in the past, but that is not something I am interested in taking full-time quite yet. If in the future I have no other options, then I will, but as of now, the gain is not worth the side effects. I am planning to try Prilosec again in the near future; I am just waiting for my next rheumatology appt. to bring this up with my doctor. I was very recently diagnosed with burning mouth syndrome. I'm curious if you have done anything to help with dry mouth. I have tried a lubricant spray, sour candy, and mouthwash, but I still have some trouble with dryness. I seem to get frequent bloody noses because of how dry my mouth/nose is.

@hannahbernard1 I use a gel I buy at Walmart for the nose called Ayr I use a q-tip to apply it in the nose. My rheumatologist has me on Pilocarpine for the Sjogren’s you definitely have to drink enough when you take it or you will start sweating( I had to go work at a factory when Covid hit and I just started the pilocarpine they were doing temperature checks and I had just taken the pill of course my temperature was high 15 minutes later I was good) . I also tried Cevelimine and the sweating was 3 times worse so I’m back on the pilocarpine. I have to also use nasel sprays. I keep gum in my mouth to keep my mouth moist which is bad for me I tend to not drink enough. Heartburn specialist said if I have that stomach surgery no caffeine which I only drink a pop if I go to a restaurant I’ve had to many kidney stones and I can’t drink plain water so I use the mio and crystal light flavors . I hope some of this helps guide you if you have any other questions reach out to me maybe we will both learn something now for me to research some of the other issues you have and see if their causing me problems. I just love this sight it is so helpful and get to meet a lot of knowledgeable people that cares

That is excellent information; thank you so much! It's very helpful. I will definitely reach back out for possible recommendations in the future. I have had Sjorgens for years but haven't dealt with its effects as severely as I have in recent years. It's been a journey and not a fun one! This is my first time really using this platform, and I'm so glad I did. I love reading through past posts/replies. I haven't ever met or spoken to anyone with Sjorgens before, it's very uplifting in a way.

@hannahbernard1 definitely look thru some of the other listings Sjogren’s mentioned in other places and your other symptoms