Sjögren’s Syndrome: how do you manage the symptoms?

yes, its the best i can do. restasis was crazy high even with my insurance.

i am in new hampshire. i was offered medica marijuana for my ptsd but its not something i would do but thats just me.

I had a pressure points exam by my rheumatologist, who was treating me for Sjogren’s.

@eileenb1022 Please don’t let snow slow you down! You want and need this rheumatologist appointment! Just leave early!
I’m not trying to make light of the weather and your appointment, but you need to get some answers and help. Will you let us know what you learn after your appointment?

She saw the primary that I switched to because he sounded so good and he is, but she hasn't gone back and I can't ask her to. She spent thousands on special diets mapped out for her by naturopaths but not sure it's helping. I'm hoping her natural immunity will return again and help her. My grandson is a very active 4 yr old, she's got a high stress job......and I can't help her because I'm not physically able to. We do take my grandson overnight at least every two weeks since he was born ❤️❤️. He has his own room here since he was born 😊😊. But little boys get active the older they get lol and I can't keep up. Tho I did buy a HUGE bin of legos that has been able to fill three large buckets and we sit in his room and build. My mom was almost 15 years younger than me when she became a grandmother and MY grandmother knew my girls for at least 10-12 years!!!
Hurting and swelling all the time really stinks. And being on steroids, coming off the first dose now and will be starting them over again next week, is not fun because of the rebound affect. Another 20 days of meds. Ugh.

I didn't read your post but I think it's almost similar to what I did and sort of regret. I had an appt with a thyroid cancer endocrinologist specialist an hour and a half away. Then my husband booked an angiogram for himself (possible blood clot in head) for the day before and since I have to drive him and spend the entire day there I didn't want him to be home alone the next day and me so far away, so I cancelled my appt. Now. I haven't been able to get another appt with her so have been flying solo with my thyroid in overdrive......deep sigh

You sound like a great grandma! I hope she goes back to your primary maybe he could help her. I remember my son being that young. My son is now 26. He has autism be just the greatest kid. I have hated being this sick cause I just want to be well for him.

Oh I understand. I hope you can get another appointment soon. You sound like me though always putting others first. My husband also has health issues, diebetes and heart issues. My doctors, all of them are about 3 hours away. It's a sacrifice.

I will and I know I don't want to have to reschedule but he is 3 hours away as it is. I been waiting a long time for this appointment. I hate winter

Hi, I suffer many of the dry eye,dry mouth swallowing issues. Numerous Gastro docs but the eye dryness was severe causing a lot of problems. My eye doctor about a year ago did a test to see if I sleep with my eyes open and I do. Not completely, but enough to make them even more dry. It’s called nocturnal lagophthalmos. After any procedure or surgery I would always wake up with corneal erosion in both eyes. It’s so painful. So I need to paper tape my eyes when I sleep, have surgery, or a procedure that puts me to sleep. It helps but never full relieve. I recently am trying Autologous serum drops. They draw four tubes of your own blood, centrifuge and I believe remove red cells. They add a salt saline solution to your own serum. It cost 300 dollars for the blood draw at the eye doctors office and typically you get three containers of eye drops. I had to freeze two and one stays in the frig. I put four drops a day in each eye. It’s been just two weeks so I’m not going to give an opinion just yet. I was spending a lot on drops for daytime and gel for my nights. This comes out to 100 monthly and if it works I’ll be thrilled. I return in three months about one week before I run out. I waited about 45 minutes after they drew my blood to get the drops. Google it to get a better understanding. Also, I was very surprised to learn how many people sleep with their eyes open. Hope this helps you. I’ll update at end of my three months. I know that these drops are offered just about everywhere.
Best of luck,
Joanne