Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Dracorn on December 06, 2020, 08:25:31 AM

Title: New Here, Looking for Answers
Post by: Dracorn on December 06, 2020, 08:25:31 AM
I haven't officially been diagnosed with Sjogren's, but have enough symptoms to believe I have it.
- Dry eyes
- Sinuses always clogged, can barely breathe through my nose
- Dry mouth resulting in tooth decay

I'm 59 years old, am carrying 80 pounds too much weight, have osteoarthritus.  Besides lots of aches and pains, I am otherwise generally healthy, in that I don't have heart problems, high blood pressure, blood sugar problems.  I currently don't take any medication other than some hormones for menopause.  I am currently taking Texas Superfood.  I try to eat organic as much as possible (thought lately I've fallen off the wagon and regressed some, hence the weight gain).

Frankly, I really don't like the idea of taking immuno-suppressing drugs.  I've always believed that taking probiotics to improve the immune system and digestion is the answer.  I haven't been to the doctor in quite a while because of Covid, and in California, everything is back on lock-down. 

What I'm looking for is what are people doing for their symptoms?  If anybody is using a non-medication method, I would like to hear about that too.
Title: Re: New Here, Looking for Answers
Post by: meirish on December 07, 2020, 02:11:31 PM
I want to welcome you to our site. I am not one to advise you on the natural way to deal with autoimmune but can add that I lived with symptoms of autoimmune from 1964 til 2002 when diagnosed with a skin AID called Bullous Pemphigoid. One year later I was diagnosed with Sjogrens and in 2006 diagnosed with Myasthenia Gravis, Hashimotos and extremely low T-cells. a few years ago I was diagnosed with autoimmune ear disease which causes deafness. I have deaf in Right ear for 20 years and left ear is getting much worse and use hearing aid.

I will add that I have lost all my teeth and it took me many years to get them to pull my teeth. I had had so many root canals and cavities and spent a fortune and went through a lot of dentists before I got a dentist who would listen. It was 2004 when the rest were pulled and I felt so much better after that. It takes a lot out of a person to deal with dental issues and infections.

I also have a lot of colon issues and have been using Benefiber which has helped. It surprised me as it has a probiotic effect and does help a lot. I also take oral probiotics a few times a week. I have found that if I take too many of them I get the diarrhea as I think it goes will over do the bacteria and cause issues. So I listen to my body. Please be patient about waiting for people to respond as it seems like covid has changed everyones life and habits and so many stresses that people have to deal with. It is hard to remember to reach out to others at times and to even think of having fun anymore.

If you just read a lot of the posts and do a search option and look up anything you have questions about you should find info. I have been on this forum about 14 years or so and we have discussed a whole lot of things ad people offer a lot of information.

Good luck and have a blessed holiday season. meirish
Title: Re: New Here, Looking for Answers
Post by: Dracorn on December 07, 2020, 07:30:08 PM
Thank you, Meirish, I appreciate the note, especially being new and wondering about replies at this time.

I think I'll do a search for probiotics.  I know that they not only aid in digestion but also strengthen the immune system.  So that's the point, the drugs depress the immune system and probiotics strengthen it.  Let's see what I find.
Title: Re: New Here, Looking for Answers
Post by: Carolina on December 08, 2020, 07:51:22 AM
Dear Dracorn:

Usually the more serious/powerful drugs are not even considered for the early stages of Sjogren's.

There are many non-prescription approaches with OTC eye drops, humidifiers, etc. 

Almost uncontroversial are the prescription medications to increase saliva (and also tears, to some extent).  I have taken one for 18 years.  Saliva is vital for mouth and teeth health!

I take a probiotic every day, one geared towards my Small Intestinal Bacterial Overgrowth.  Yeah, horrible name, isn't it?

Welcome to our forum. 

Keep us posted, please!

Title: Re: New Here, Looking for Answers
Post by: meirish on December 08, 2020, 10:29:13 PM
I will add to the info on sinuses that doing sinus irrigations are very helpful. If you are ably to see a ENT it does help to have them talk with you about sinus irrigations and the medications mentioned by Caroline to help moisten your mouth. Also have him examine your salivary glands and talk with you about how to treat the glands with heat and massage to help the ducts drain a little better.

You can do searches on here also about sinus irrigations and heat and massage to the salivary glands. Do a search also on images salivary glands so you get an idea on the location of the glands. Maybe search also for some info on the job of the glands. It helps to do a lot of research and know that you will not understand everything that is written.

Also know that it is pretty standard rule to not believe everything that is written also. It just helps to read as it does teach you some of the words and the language of the autoimmune issues.....will not be as uncomfortable hearing a doctor talk about it. Also know to ask the docs questions if you don't understand. Take care. meirish
Title: Re: New Here, Looking for Answers
Post by: meirish on December 14, 2020, 03:10:18 PM
Hope you have been able to do some searches on the site that will give you info that you need. meirish
Title: Re: New Here, Looking for Answers
Post by: Peanutbrain on December 18, 2020, 06:01:00 AM
I was diagnosed with Sjogrens many years ago because of dry eyes. My issues have waxed and waned over the years. The eye problems weren%u2019t so bad that I needed anything other than periodic eye drops until recently. I had spikes of organ involvement that, at one point, we%u2019d tried hydroxy (I had an allergic reaction) and discussed going on the A drug (can%u2019t remember) but that actually stopped when my endocrinologist switched me from cortex to prednisone, which kind of makes sense. My problems are caused by an overactive immune system.  It%u2019s not why I take prednisone but I was ever so grateful!! I want to post about my extreme dry eye I%u2019m experiencing now but cannot figure out how to make my own post. One eye is so dry it%u2019s affected my vision-blurry! Edit to add-regular exercise may naturally help. I feel better (but haven%u2019t been as good about it during COVID which may be part of my problem)