Sjogren’s Syndrome – Introduce yourself and meet others

@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.

Have you tried meditation? Gentle yoga also helps me. I also use a heating pad but make sure its turned off before sleeping
There are a lot if good guided mediations on the web
Check out Jason Stephenson youtube page.
Good Luck

@cblue the schedule of 6-2-10 is exactly every 8 hours and you won’t have to keep figuring the times! You certainly don’t want to skip the night dose—10pm is the night dose. If you like to stay up later, try 7am, 3pm, 11pm.
The night sweats sound awful! What has your doctor suggested be done for them?

I was diagnosed with Sjogren’s syndrome also by immunologist after Covid. Not to be insensitive, but would you mind sharing your symptoms? I suffer from severe pain, but it’s because of my spine and failed shoulder replacement. My only symptoms are dry mouth eyes and skin. Thank you…

Thanks for suggestions. To switch I would have to take a dose early. My doctor at first wasn’t responding (odd, she was very responsive when I has vascultis..lab work which somehow ruled out auto immune cause. ), so I haven’t asked anything. However, I eventually received a call from her assistant to renew a prescription & offer me an appointment in a few weeks. I don’t how if she will respond to portal messages. I Haven’t tried since reaching the assistant last week. But especially since the end of daylight savings time evenings are worse “earlier “… The evening dose of cevimeline doesn’t work & eyes & sensitivity to sound and joint pain all increas. Sleeping is impossible.. but during the day if I keep moving.. I’m not too bad. Starting to lose hair from the hydroxychloroquine maybe? How much hair will I lose? ( female- hope not all !! !

@cblue I really think you should call your doctor or message her thru the portal. She needs to know what goes on in the evenings. Nothing sounds right to me. (I’m not a doctor, but I can tell when someone is miserable)
Will you call or send a message tomorrow?

I was pretty miserable and I am on and off. I didn’t know what to ask her, but I did write to her about my finger, pain and lack of dexterity. She told me to take Tylenol a few times a day I’m seeing her in a week and a half. I really don’t know how to ask a portal question about how I’m feeling during the daytime hours after I get past the early morning if I keep moving, I’m OK, except for the finger, dexterity and pain(I’m not wonderful but I can go out for a walk or exercise slowly but it helps)) the fact that I’m in an apartment is overheated and dry or freezing cold she can’t do anything about I run a humidifier I think I need to buy a better one that covers more of the house-(apartment actually) so I have no control over the heat . Thanks for your support. Hopefully when I see her, she’ll have some suggestions or at least give me an idea about what to expect I went through old notes, and I actually had a somewhat milder, but similar outbreak that led to hospitalization in May 2022 for sodium crisis I was drinking too much Water .

Yes, I can’t edit the errors in my post. At least not on my phone. Yes a run-on sentences so some of what I was saying doesn’t make sense. Apologies.