Sjogren’s Syndrome – Introduce yourself and meet others

I would appreciate if posts would contain less acronyms (?)
I’m new to all this and have no idea of what you are talking about, sorry (:

To CBlue: I'm sorry, I have the same frustration at times, but that is what the medical people call it too. It is where they collect plasma from lots of people and only give you the gamma globulin which you then use to fight viruses etc. I was also IgG low at the time (my doc tested me) and felt I couldn't lose by being boosed I do feel pretty healthy for haveing as many diagnoses as I do but my neuropathy hasn't really "gone away". Maybe a tiny bit better when I'm haveing a good day pain wise. I ony have balance symptoms with my neuropathy, no sensory. So I am spared the pain and numbness, etc.

Thank you for that thorough accounting. You do have an amazing team of people involved with you. Please keep us updated as to how it goes. And your attitude and strength of purpose is an inspiration to us all! I was out yesterday getting my infusion with the IgG. It is thick stuff and slower than most other fluids. I was there most of the day. not painful, just tedious.

About Sjogren's and pain, I just learned the other day that some pain docs are using Low Dose Naltrexone for chronic pain relief. This came from my new rheumatologist that I had to bully to get my 2mg perscription for LDN a few months ago. Now she seems accepting of it. She still let me run out for about 3 weeks before she refilled it. For a few days, after she canceled my Rinvoq perscription because of my high cancer risk, I found out how much pain relief my 2mg of LDN was giving me. Imagine if I was taking it twice a day! Beam me up Scottie!

@cblue I’m still having to look things up!! It’s all the medical jargon that no one understands until they have to use it or it happens to them. Here is what NIH (national institutes of health) says about IVIG (intravenous immunoglobulin)
https://www.ncbi.nlm.nih.gov/books/NBK554446/#:~:text=Intravenous%20immunoglobulin%20(IVIG)%20is%20a,%2C%20infectious%2C%20and%20inflammatory%20states.
You may want to start a little notebook that lists the ‘names’ as they pertain to Sjögren’s syndrome.

Thanks ! Good idea

I have probably had this for at least two years, but was recently diagnosed cevilemine three times a day. can’t get timing , right? Wake up in the middle of the night unable to swallow, all dried up believe it or not no sugar chewing gum helped. But can anyone suggest a good schedule for taking that medication three times a day I end up having to take it in the middle of the night and don’t wake up in time, wake up in pain and dry eyes glue shut . Sorry middle eye posting excuse. Any errors or incoherent sentences. If you wish, send private communication.

I can’t help with your dosing issue but have you tired Xylimelts , https://www.oracoat.com/, at night? They’re lozenges that stick to your gums and slowly melt during the night. They work great for me. No tongue stuck to the top of my mouth when I wake up…

Thanks. Actually finding that chewing sugar free gum helps. Never had luck with xylimelts, but may try again. Is anyone taking cevilemine 3x daily? Until I see rheumatologist, can’t seem to find a way to not be taking in middle of night. Maybe will figure out a schedule ?

Hi, I have Sjogren's along with Small fiber Sensory Neuropathy, Fibrosing Non Specific Interstitial Pneumonia and what they are calling inflammatory Arthritis. My dry eyes are much better after starting Xiidra a few months ago. There are many other problems but I will not bore you with all of this right now. I am here to see what is new since I have had this disease since 2003.