Sjogren’s Syndrome – Introduce yourself and meet others

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.

@cblue That sounds awful! How long have you been taking cevimeline? I’ve read that it can take several weeks to notice the effects.
When i have to take medicine 3 times a day, I schedule it at 6am, 2 pm, and 10pm. This schedule evenly covers the 24 hours. And you don’t have to take pills at night.
I worry, though, that you chew gum at night. Aren’t you afraid of swallowing the gum? A better idea might be to use a sugar free lollipop. Since it has a stick, you can hold it in your mouth for a few minutes and then take it out. Or, how about ice chips. They’ll moisten your mouth and disappear!
Do any of these suggestions sound reasonable?

Thanks, my post wasn't coherent. Apologies. I don't chew sugar free gum at night (I WOULS be afraid I would swallow it). II like your suggestions about hours, but I wasn't given guidanc, so just took pills every 8 hours after I first rec'd the pescripiong. Unfortunately, I don't think I can skip the middle of the night (maybe a gradual tweak will get me to more sane hours (: . I tried skipping the night dose, but doesn't work. Eyes glued together, generally bad news. The sweating is not like real sweat, but I am soaked and freezing. It' s cold enough weather in ny area, my apartment is over heated and dru/ but turning off heat is too cold. (I do use a humidier to counter the dryness. Long story short, i'll aim to twak to those hours . Thanks. ,

I have Sjogren’s Syndrome, Small Fiber Neuropathy, Degenerative Arthritis and have recovered from PMR. It’s been an adventure. I take Tramadol for pain, Sinemet 25/100 for my RLS, Prilosec and Famotidine and Miralax for my GI issues, Eve drops many times a day. I’m never far from my lip gloss and eye drops. I drink a LOT of H20, but the worst has been 2 episodes of filamentary kerotosis!!!! Fortunately, Acetylcysteine compounded eye drop ($$$) 4 Xs a day brought it under control both times. I have had both knees, & 1 shoulder replaced. I’ll have my other shoulder replaced 8-24. I’m on the joint a year plan! Oh I also have diabetes which is treated with Victoza 1.8 daily. I keep my PCP busy! She’s an Integrative Physician, and she has provided excellent care. All in all, I consider myself fortunate to have an MD who ‘gets it’ .

I’ve been reading your ?s and suggestions. They are appreciated.