Sjogrens World Forums

Thank you, araminta, for responding to my post, and I appreciate your empathy regarding my situation.  My sympathies to you for having had a Christmas diverticulitis bout in the past. I've been hospitalized twice for those, and it was NOT fun!  I am a bit nervous about what my holidays this year will look like. I have been looking forward to Halloween this year, though, only because I will FINALLY get to see a top gastro doc in the state to discuss my situation. I have been working with a nurse practitioner who works with him, but he is very hard to get an audience with, so that's one "win" to look forward to. You mentioned Sjogren's fatigue...I have always been aware of how it has played a part in my life, but now the fatigue is at a whole 'nother level.  I need at least 11 hours of sleep to even function.  Then I get up and can at least do a few little things.  I have to give myself a little break on this, as I know my body has been fighting quite a battle this year.

I am sorry to hear about your auto-immune arthritis.  This illness sure knows how to challenge us in our daily lives.  I have not tried acupuncture, but a friend did suggest it a number of years ago. And I appreciate your mentioning the meditation you do, and the need to stay positive. I do have a life long history of faith, and truly need to reinstate a regular, daily habit of spending time in that.  My mother, who was a church organist, gave me a wonderful example of that.  Her time with God was @ 5:30 a.m.!  My friend jokes about her sister, who gets up at the "crack of noon!"  I'm on that schedule now, and really need to crank that back, especially with daylight savings time coming soon enough. 

Again, thank you so much for reaching out with positivity and best wishes!  Your reply is what I came to love and respect when I used to spend more time on this site!  Take care!   ~Heidi

Thank you for this post! It reminded me of my early days of Autoimmune disease, when I did take collagen supplements, with good effect, when my diagnosis was Sarcoidosis and inflammatory poly arthritis.

As Other Dx were added, and treatment escalated to steroids, MTX and DMARDS, the collagen kind of fell away, but now, having reviewed some recent research, I plan to restart it. One new thing I found, which is very timely for me, is that it seems to improve bone density in post menopausal women, and since I was recently Dx'd with osteopenia (25 years post meno!) I'm hoping to use collagen before having to possibly take bisphosphonates.

This article from the Arthritis Foundation has some useful information.
https://www.arthritis.org/health-wellness/treatment/complementary-therapies/supplements-and-vitamins/can-collagen-supplements-help-arthritis

Hi. I was listening to this episode of the Huberman Lab Podcast:

https://www.hubermanlab.com/episode/dr-craig-koniver-peptide-hormone-therapies-for-health-performance-longevity

in the Youtube video, at 19 min, is a section named "BPC-157, Inflammation" that I think is very interesting for us if really this peptide BPD-157 do really functions as an antiinflammatory substance.

On the other hand, I was wondering if some of you is using collagen (a protein) supplements, that other people claim is useful for improving pain in the joints.

Any of you have any experience with these substances?

I have been diagnosed with vasculitis, and occasonally have a very localized outbreak of hives that I can't specifically relate to areas of vasculutis, but I also have a Dx of puritus, which, if I give in to the temptation to scratch, will often produce hives. The puritus and hives never seem to respond to antihistamines, so I have a prescription for a mast cell inhibitor, and I've found that increasing my Vitamin D and Magnesium (both mast cell stabilizers) has reduced the frequency of occurances.

This all started prior to my diagnosis of Sjogren's, but after Sarcoidosis, so it's always been considered part of that disease process, but with Autoimmune, really who knows?

I have been diagnosed with Sjogren's and have periodic hives. This latest outbreak seems different. Has anyone been diagnosed with urticaria vasculitis?

My immunologist put it bests:  we use the tests we HAVE, not the tests we NEED.  In my case I have severe autoimmune problems, but not elevated autoantibodies!

Autoimmune means that our immune system attacks our selves, Auto means self.

My immune system doesn't use auto antibodies to attack me, it uses Cytokines.  BOTH are products of the Immune System.  But all the tests for autoimmune diseases do not test cytokines, only autoantibodies.

Just remember this when you are dismissed as having "no autoimmune' disease.

My immunologist is professor at Duke Medical, doing research in CVID, teaching graduate students and medical students and seeing only patients with CVID.  She is brilliant and know her stuff.

She identified my Primary Immune Deficiency, and I now have infusions of 50 grams of Gamma Globulin EVERY 4 weeks, since 2013.

But the Gamma Globulin only keeps me from getting infections month.

YOU know what's happening to you, but they are probably using the only tests they have, not the tests you need.

It is so hard when doctor's dismiss us because of their ignorance.

Elaine

Hello Heidiaj, I've been watching to see if anyone replied to you with similar issues, but see that no-one has yet come forward.  So thought I'd just send some sympathy and best wishes to you.

I've not had such extreme gastro-intestinal issues as you, but I've had irritable bowel syndrome for years, and had diverticulitis a couple of Christmases ago (a lovely time of year to get it  ). These issues do affect our day to day life, and I can well understand how you feel stuck and housebound at the moment.  Of course the Sjogrens fatigue does that to us too.

Most people here seem to have multiple issues with Sjogrens, if it's not one thing it's another.  In the past two years I have developed what seems like a kind of auto-immune arthritis, with one hand or the other occasionally swelling up painfully, and me generally feeling unwell.  I have unpleasant sweats sometimes at night, and of course the dryness issyes are always there.

It's good that you're seeing a counsellor.  I also wondered if you'd tried any alternative therapies such as acupuncture?  I've never tried that myself but it does seem to help a lot of folk.  I do a half hour's meditation most days, it's helpful.

Try to stay positive, getting depressed never helps and can make things worse, while a positive and hopeful attitude speeds recovery.

Hopefully someone with some specific medical knowledge about your issues will reply in due course.  In the meantime I am sending you positive vibes and very best wishes!

Hello to everyone!  I think it's been quite a long time since I've been on here, and it is REALLY good to find my way back!  I remember soooooo many wonderful people who responded to posts I made in the past.  The warmth and understanding that others showed were breathtaking!  I'm looking to see if anyone can understand the nightmares I've been going through since 2021, and especially this past year.  I know in the past, I looked up whether there were many gastrointestinal issues that were directly related to Sjogren's, and couldn't find much of anything.  Here's my brief story:
March '21 - Had what is called a gastric volvulus, where my stomach twisted (happens actually in dogs and infants), became unattached, and burst through a hiatal hernia I had that never gave me much trouble. My stomach landed in my chest, cutting off the blood flow to my heart and lungs.  Had immediate surgery to pull the stomach down where it belonged, and repair the hernia. A month later, I had symptoms again, and had testing that revealed that my hernia had opened again.
August '21 - Found a different surgeon, who did a 2nd surgery.  He felt that if I had a feeding tube for 8 weeks, the scar tissue from that would help secure the stomach in place.  He did that, and also put a mesh around the esophagus and repaired the hernia.  Two month later, I went to Florida on vacation for 10 days.  I had to be very careful with what I ate, for eating the least amount of fatty food, or too much food period, would result in the food going right through me. 
Now it's 2024.  I'm now 67.  I've been diagnosed with Sjogren's since I was admitted to the hospital in 2007 with agranulocytosis, and almost no white blood cells.  I believe a short one-month stint on lamictal could have brought this about.  In January of '24, I was admitted to the hospital with ischemic colitis, including bleeding within my colon. Amazingly, I was somewhat functional in February, and was on Reglan for the first time.  That didn't last.  In April of this year I was hospitalized with diverticulitis.  Since then, I have had a limited time....maybe 10 days...where I've been able to do anything socially.  I have had so many tests on what comes out of me that I'm weary (because I still have yet to be able to process food through my system).  Positive tests were for calprotectin and lactoferrin, with a Fecal Immunochemical Test (FIT) which was also positive (for hemoglobin). Things have been worse now in terms of keeping any food in me, and just in terms of overall weakness. My blood pressure is running on the low side, and I need IV fluids once a week just to be semi-functional.  If ANYONE has had ANYTHING they've learned from similar gastric nightmares, I could really use the support.  I've always been an extrovert despite my illness, but now I'm starting to lose my mind because I am, more often than not, at home, with limited abilities.  I hope to see some familiar names respond, to give me reassurance that others I remember are still soldiering on as Sjogren's warriors!!  Thanks for reading this if you've gotten this far.  I promised my counselor I would find my way back here and attempt to get some support from people who know the wide-ranging problems that can go along with Sjogren's.
Blessings to you all in your battles,
Heidi

I'm glad to hear it worked out!  Best, Marie

Reclast update.  All went well. Nary a side effect. 

WHEW!

I've had an infusion of 50 grams of IgG for 11 years. I've never had a single problem during or after.  But the litany of side effects, some horrendous listed by folks having IgG infusions really bothered me.

I won't have another Reclast infusion until next year, with another bone density scan before the infusion.

Stay tuned.

Elaine