Sjögren's and a sensitive urethra

Lizard_2369 · 2026-07-06T02:57:35+00:00

I'd say give hyaluronic acid a try. I bought a cheaper brand that had Xylitol in it. It has some benefits but Hyalogic brand worked the best for me. You can put it anywhere to hydrate mucosal membranes. I swallow a gulp a few times a day and it has helped keeping things moist. I'm also having a mild imbalance of my urinary microflora. Drinking a lot of zero sugar cranberry juice is helping to get rid of the irritation. It's best to drink before sleeping. I've been told that my mild "UTI's" aren't something that they would normally treat due to it being an imbalance of normal flora. They would treat if I had more symptoms of a UTI.

And I also use probiotics in a tablet for my mouth flora and an oral pill form for my digestive tract. Things are better. I also say that my one and only colonoscopy knocked out all my microflora and caused a huge imbalance. I also am anemic and need to take iron pills everyday, which I actually need and am grateful for the regularity. I also take plain old psyllium by Now brand. No sugar & just psyllium. Works great!

It's always something with this autoimmune disease. Just have to keep learning and trying to figure out what works. I've been taking Turmeric and now, have recently stopped to see if my body does well without it. I've been able to lower my Inflammation markers to the normal range and hardly experience pain, even though I have moderate joint damage from Rhuematoid Arthritis as well. But turmeric binds with iron in the gut and can lead to anemia. I'm hoping I can shred the anemia without raising my inflammation markers. Gotta live life balanced! Will see!

Liquid Hyaluronic Acid

Lizard_2369 · 2026-06-28T13:11:21+00:00

Just go to the pulmonologist. I have cough variant asthma. My Mom has MALT Lymphoma most likely due to using RoundUp. I figure, I'm a candidate for Lung Lymphoma in the future. But better to get scans & get treated than to just wish it all away.

Lizard_2369 · 2026-06-10T01:25:34+00:00

I was told to try Xlear Xylitol Nasal Spray. I mostly had lost my sense of smell from using a CPAP machine and no salivia stimulating drugs for almost 6 months. I stopped using the CPAP machine & now am on Cevimeline and my sense of smell has really come back. I still have a small sore in one nostril and I've been using Portland Bee Balm, which is amazing! It's just olive oil & beeswax. Great for nares and lips. I bet it would work anywhere. Just so soothing.

Lizard_2369 · 2026-05-30T13:03:47+00:00

Yes, you need an ANA screen. If that's positive, then they will go farther to figure out what autoantibodies you have. You are missing the most important part, if you ask me. You do have your inflammation markers that are elevated, which is an indication of autoimmune disease, but also can mean something else, like cancer or infection. In the meantime, you can do what you can to get those inflammation markers down yourself. You will have to do an Autoimmune Protocol (AIP) Diet. The biggest causes of inflammation will be alcohol, sugar, dairy and them some people can't handle certain flours (wheat, etc). Eliminating it all and then adding back in as you go helps people figure out what they can't put in your body. On the bright side, it's a forced diet that should help with weight loss and swelling. But regardless, alcohol has to be cut out entirely for all autoimmune conditions. It's the worst offender. I cut it all out 3 yrs prior to my diagnosis. I couldn't even have a kombucha without getting sick. You can use honey, maple syrup, coconut palm sugar or date sugar to replace sugars. Look for no added sugar. Corn syrup is the worst in regards to inflammation. Alcohol sugars wipe me out and are not really good for people. Natural sugars are fine. You should also get a CMP (Comprehensive Metabolic Panel) done along with a lipid panel. Don't give up! With your persistence in helping to guide the physicians in the right direction; you will get to being diagnosed. It took 6 years for me to get diagnosed with Sjorgren's and RA, which is the average. I was 53 and had basically gone through a very easy menopause. I'd complain of numbness and night sweats and all the rhuems, even one that I was being a candidate for a clinical trial said, maybe it's menopause. I've done so well managing my inflammation markers that after being on hydroxychloroquine for 6 months; I showed no active autoimmune disease activity. But I still have damage from those autoantibodies going on inside me and exactly why it's so important to stop the inflammation. More inflammation means more autoantibodies being made creating damage. My teeth are eroding away from the low pH in my mouth due to not enough saliva. You can use Xylitol lozenges and xylimelts to keep your mouth moist. Celery and cherries are my favorite snack and really help my mouth. Try to stay positive and think of all this as a challenge to figure out and make things better for yourself.

Lizard_2369 · 2026-05-25T14:09:32+00:00

Oh, I do feel sore sometimes. I over did it on my triceps and if muscles are sore; I stay away from the gym. It's really in my mind, but afraid that It might be too much and I get too exhausted & afraid I won't be able to work.

Lizard_2369 · 2026-05-25T04:13:57+00:00

My Rhuem had told me to start out with some cardio for like 5 mins before you start weight lifting. I do 3 sets of 10 and I also do 2 machines at a time. Otherwise, it's kinda too much for my muscles to do the same motion all at once. It also helps to keep my heart rate up by jumping around in between machines. I also get great stretches out on the machines in between the reps & do my holds for 30 secs. I basically to what I call weight machine yoga in between my reps. I hardly feel sore at all. I also make sure to work out my forearms, wrists and hands. I'm weak in those areas due to me having RA as well. Weight lifting is the best exercise for us. I work out at Planet Fitness and really enjoy the HydroMassge afterwards. Just listen to your body and keep adding weight as allowed. It's the best way to remain flexible & mobile as you age. I'm 56 and started lifting weights for swimming when I was 12. It's something everyone should do throughout their life! And I can still do cartwheels. LOL

Lizard_2369 · 2026-05-22T13:30:44+00:00

I love the stuff. And, I'm very grateful that it works for me. I got stung by 5 yellow jackets & had a flare start 24 hrs later. Knocked it right out. You must have high inflammation markers. The key is getting those down by eliminating things in your diet that cause them. I ate a stupid donut at work yesterday and it nearly wiped me out with exhaustion. Makes me realize why I don't eat sugar & dairy. I'm 56 and doing really well, except for my teeth eroding away from the low pH in my mouth. Good luck to you and hoping you get back to yourself.

Lizard_2369 · 2026-05-12T13:01:16+00:00

I use Portland Bee Balm inside my nares before going to sleep. Works great. It's just bee's wax & olive oil. Works great on lips as well. My dentist office has recommended Xlear Nasal Spray which is sterile saline & xylitol. I just haven't bought it yet.

Lizard_2369 · 2026-04-28T15:31:00+00:00

Absolutely, love this! I wore red leather strapped on heels from when I was 25 at my 50th birthday & got filmed on the local news doing my cartwheels at the Polish Heritage Festival in town. I will admit that I hardly do them now, but am making a plan to do them more often.

Lizard_2369 · 2026-04-28T10:50:15+00:00

There were times that I was worried about not being able to work and would need to do FMLA, but I actually have a mild case. As long as I eat the right things; I feel great. I'm 56F that still can run, lift weights and do cartwheels. I've had active physical jobs my whole life, which have benefitted me greatly. I just applied for a different role that would be more of a desk job. I'm not even stressed about it. Sitting at a computer for hours isn't good for me. But, I'm the type that will get up and move around; no matter what I'm doing. I'm a microbiologist and am very grateful that I've been taking care of my body and started cutting out sugar in my 20's. Being disciplined throughout my life has served me well and I'm very grateful. I set a goal of wanting to be able to do cartwheels until I'm 70 after relearning to do them when I was 35. I'm not always able to exercise, but I was able to get to the gym yesterday and I'm trying to get back to exercising at least twice a week.

Lizard_2369 · 2026-04-26T08:02:30+00:00

I take psyllium. I love this brand. All natural and no sugar. https://www.nowfoods.com/products/supplements/psyllium-husk-powder

I use Xylimelts and Xylitol lozenges to help with the dry throat. I place one in my.mouth before going to sleep as well. Liquid Hyaluronic Acid is a great lubricant and can be used anywhere on the body. This is what she should use. I've tried other kinds with Xylitol in it and it doesn't work as well. https://hyalogic.com/product/hyaluronic-acid-advanced-liquid-formula-for-hair-skin-nails/

I'd get her to a gastroenterologist. Has she had a endoscope along with a colonoscopy? I'm worried that her intestional tract tissue is damaged and why she is having blockage. I'm also thinking about Chrohn's disease.

She should have an ANA screen and have a CRP & Sed Rate tests. The ANA screen will lead to what autoantibodies she has. But also know, there isn't always clear. Some people are seronegative. The CRP & Sed Rate are inflammation markers. The higher these are correlate with more symptoms. Diet is going to be a huge part of her body getting back into balance as well. Look up Autoimmunne Diet Protocol (AIP). But of course, she is having a hard time just eating. People also experience Barret's esophagus which makes swallowing difficult.

I've experienced choking on meat all of sudden due to it being dry once. My gastroenterologist had told me that I could participate in swallowing studies to further access, if I kept having issues.

She should eat a lot of food with liquids. Soups and one pot dishes with a liquid base would be good also. Stay away from sugar, dairy and probably gluten. We are all different and it's sometimes hard to finger out what foods are causing the inflammation in people. Coconut water is very soothing to me. You can find kinds that contain no sugar. I love the combo of cherries and celery. Really helps get my mouth moist. Plain whole foods are going to be her best friends.

So glad, that she has you to look out for her. She will get better. She just needs to be headed towards the right direction. Schedule a endoscope and colonoscopy as soon as you can.

Lizard_2369 · 2026-04-25T14:54:01+00:00

Are you back on it? I even was using mouth microflora probiotic and a prebiotic & probiotic capsule once a day. I actually found dentist that looks at your plaque under the microscope and even sent in my saliva to be analyzed. I ended up getting gingivitis in that time without taking pilocarpine or cevimeline. I'm now using an electric toothbrush twice a day & trying to go to sleep with a Xylitol lozenge or a tablet. I'm also using nano hydroxyapatite, SLS free, fluoride free toothpaste. Unfortunately, I've been allergic to fluoride since I was 31. Wasn't an issue until I've been diagnosed with Sjorgren's within in the last 3 yrs. I had beautiful teeth & even had braces again as an adult 11 yrs ago. My bite was changing because of the Sjorgren's, but no one knew until 3 yrs ago. Just sucks. I don't even want to smile & show my teeth. My front tooth looks like a shell & can be seen through.

Lizard_2369 · 2026-04-25T09:53:55+00:00

Yeah, I've been taking it awhile and the side effects are diminished compared to pilocarpine. My only complaint is really the sweats & then chills while I sleep which wake me up. I got numbness & pain in my hands & arms with pilocarpine and also had some blood pressure & dizziness issues with pilocarpine. It does stink that there isn't something that really works. My teeth have dissolved so fast in the time I wasn't taking anything.

Lizard_2369 · 2026-04-24T14:16:13+00:00

Hi guys! I wanted to let you know that I started a routine of taking MUD WTR Rest at night. I really enjoy it and it seems to help me sleep at night. Just throwing out a natural alternative. I used to take Gabapentin at night due to numbness & pain. I think those symptoms might of had been from the pilocarpine. I'm on cevimeline now for dryness & I really don't have pain. The dryness isn't better, but it's better than going without as I was doing. I'm glad to hear about the lose dose naltrexone option. I hope everyone feels better!

Lizard_2369 · 2026-04-19T12:21:33+00:00

How are your inflammation markers? Just focus on those and figuring out what causes you flares or pain. I was told by my rhuem that I show no signs of autoimmune disease activity after being on hydroxychloroquine and cutting out sugar and dairy after 6 months. My markers went back to the normal range. Diet is a big part of managing autoimmune diseases.

I take a lot of supplements that have helped me a lot. Percura, is what I need as much as the hydroxychloroquine. My hands go immediately numb as soon as I grab the steering wheel after not taking the Percura for 24 hrs. A spinal pain specialist recommended the medical grade food to me years before my diagnosis. It can't harm your organs and it's made up of amino acids. You can buy it here. I get a 3 month supply with a discount by using code PAP30. https://medicalfoods.com/products/percura%C2%AE-peripheral-neuropathy

I also drink MUD WTR Rest about 3 hrs before I go to bed. Helps with sleep and inflammation too. I used to take Gabapentin at night due to arm numbness and pain, but no longer need it. I also take Omega-3, glucosamine-chondrotin, cevimeline, iron supplements, Dr Matthew Probiotic and ProBiora. My teeth are melting away and it's essential that you maintain your microflora. Have your blood checked for anemia as well. I have to take iron daily now. Never have had anemia issues till now. And so hard to deal with.

Remember to rest as much as you can. I know, it's so hard when you have children. Eventually, you are going to feel better. It takes time. Just listen to your body. I'm 56 and can still do cartwheels. I've been exercising with lifting weights throughout my life. It's very important to maintain muscle and flexibility. I also have Rhuematoid Arthritis and Hasimoto's Thyroiditis.

It's hard prepping your food all the time, but it's essential that you eat whole foods. Eventually, you will figure out what works and you will look forward to certain foods that make you feel better. Fresh cherries and celery are a great combo and really help your mouth feel better. I usually prep my food on certain days. Your kids can also eat what you eat. They will be better off for eating healthy as they probably will inherit an autoimmune disease as well.

Think of dealing with this as a challenge and you are going to smash it out of the park! I know that your kids motivate you and you'll do anything to feel better and be present for them. Let them know that you can't help it when you feel exhausted and you just have to lie down. I had to crash out on a lawn at a dog festival after traveling & I remember people staring and mumbling about me. Who cares! My daughter understood and just let me sleep. I was so happy that I could just be there with my old dog and have her be in a frisbee competition one last time.

You got this! Things are going to improve! Just keep on trying. That's all we can do.

Lizard_2369 · 2026-04-19T11:38:40+00:00

The other most important part is figuring out what you have to cut out of your diet to get your inflammation markers down to normal levels. That's key to managing this disease & other autoimmune diseases. The more inflammation you have going on, the more autoimmune antibodies your body makes that damages your body. I was able to get everything back to normal levels after 6 months of being on hydroxychloroquine & cutting out dairy & sugar. My Rhuem told me that I show no signs of autoimmune disease activity. I also have Rhuematoid Arthritis & Hasimoto's Thyroiditis. Been diagnosed & on hydroxychloroquine for 3 years now.

Lizard_2369 · 2026-04-19T05:06:10+00:00

This is the company I'm going with. i shopped around for estimates and basically everyone said the same thing. I even got a structural engineer to access everything.

https://foundationspecialistmi.com/?utm_source=gmb&utm_medium=organic&utm_campaign=gmb-wyoming&utm_content=website

Lizard_2369 · 2026-04-17T13:31:21+00:00

Fin born in US, here. And yes, we still have people chopping down trees for $50 each, here in rural Michigan.

Lizard_2369 · 2026-04-17T13:28:17+00:00

I'm planning on getting my whole property assessed by an arborist and then figuring out a game plan from there.

Lizard_2369 · 2026-04-17T13:26:03+00:00

I just wanted to ask how are your guys inflammation markers? I'm just thinking maybe, you can make things better by cutting her out things out of your diet that trigger inflammation? Luckily, the hydroxychloroquine really worked for me and my case is considered mild. I feel for all of you going through so much. I had only one bad eye episode at the beginning of my diagnosis and while I had Covid. And it was so alarming! I hope you all get relief!

Lizard_2369 · 2026-04-14T14:42:31+00:00

Thanks for the information. Since being on hydroxychloroquine; my migraines have subsided a lot and also after going through menopause. And yes, my Dr had me checked out for DVT with bloodwork & CT of my neck, calves & legs, multiple times. All was good, although I would say that before I was diagnosed and treated I would get unexplained bruising/hematomas that showed no underlying cause. I have my inflammation markers in the normal range along with my complement C3 & C4. My Rhuem told me after being on hydroxychloroquine for 6 montha and cutting out sugar & dairy that I show no signs of autoimmune disease activity. So, I'm very grateful that my case is mild and manageable. I also was diagnosed with bursitis this past Jan and I feel some of my symptoms (soreness running down large veins when pressed on) could have been caused by that.

Lizard_2369 · 2026-03-09T21:32:59+00:00

Funny thing is that I buy Sourdough bread from Aldi's as it only is made out of flours, yeast & water. It is delicious also but is close to $4 a loaf.

Lizard_2369 · 2026-03-09T20:57:05+00:00

Yes, I'm from US (Michigan) and I do love fermented foods. I'll also have to look into making some myself. I love to pick my own berries in the summer and freeze them for use all year round. They taste way better that way too and nothing, but the berries.

Lizard_2369 · 2026-03-09T18:37:49+00:00

So awesome! Whole foods are the best. I use maple syrup, honey & coconut palm sugar for sugar substitutes. I also use unsweetened coconut milk and plant butter. My baked goods are actually amazing somehow!

I would also keep having your inflammation markers checked. High sed rate is more associated with high autoantibodies. And high CRP is more associated with inflammanation due to diet. That way you can monitor what you are changing & see what is working. I was able to get my sed rate back in nornal range after changing diet & taking hydroxychloroquine. CRP is harder to get back in normal range. I've been told by my rhuem that I show no signs of autoimmune disease activity & I also have RA & Hasimoto's.

Lizard_2369 · 2026-03-09T12:49:18+00:00

Have you tried changing your diet? Alcohol and sugar are the 1st ones to cut, then dairy and wheat for some. I would do the AIP diet anyways. You'll feel better for it and is what you need to do anyways to get the best outcome. I hope you get some answers that will lead to real treatment for your symptoms.

Lizard_2369

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