Sjogren’s Syndrome – Introduce yourself and meet others

Does pilocarpine really help? I have the medication but don’t take it every day.

Hi. I’m Rhonda. Is there such a thing as Sjögren’s cough? I was diagnosed by my ENT doctor in 2010. I do a nasal lovage almost daily, I use Azalastine nasal spray and Dulera inhaler. The inhaler often gives me thrush. I have a very persistent cough. The mucus is so thick and sticky that it will cover my throat and take my voice away. I was trying to clear my throat the other day and my iwatch alerted my that my heart beat per minute went up to 110-126, it’s normally around 73 bpm. I don’t know what else to do so suggestions are welcome.

Pilocarpine does work for dry mouth. The problem I had with it was hot flashes. There is another pill for dry mouth. The generic is difficult to say and remember. The name brand is Evoxac. They do help with dry mouth. Some days are worse than others to get relief.

I take it 3 times a day. You really need to take it consistently every day for the desired effect.

Does it effect the blood pressure?

Hi I’m Liz and I too have sjrogrens and I take Pilocarpine. I’m now up to 4 pills daily. For me it’s hard to remember the extra doses they added on. I was having a lot of trouble with the night pill. I found myself choking on my own saliva. It doesn’t work on me sometimes , I have a thirst that is unquentable ! I’m always so thirsty. Sometimes 8-10 pints of water and a lot of tea as well. The water bloats the heck out of me. Dry skin is so horrible it’s very flaky if I don’t slather something on constantly. Does anyone have any suggestions for a good cream to really moisturize my body. I suffer from Lupus, RA. and Hoshimotos. Dry eyes are also a painful problem impacting my vision, insurance won’t cover Rastasis and I’m allergic to the last one they had me try. Does anyone suffer from this with their Sjrogrens? Thanks for listening.

Look up Mary’s Magic Mouthwash in google. It’s a recipe you can show you physician to write a prescription. It will address the THRUSH, THE PAIN and irritation of Sjogrens. Unfortunate that it does not address the underlying cause of the dryness.

Thank you so much. Thrush makes my mouth feel raw. I am still interested in finding out if anyone has a recommendation about the cough and thick mucus.

I use Cera Ve creams and Working Hands several times each day. They help.

I cannot take either of the 2 main meds to help produce saliva because they make me sweat
(big time!), so I am resigned to having a thermal mug of ice water on the nightstand. Some nights I drink from it almost every hour. That makes for a rather poor sleep.

My other challenge is Raynaud’s Disease. Ice cold fingers and toes make winter difficult, but I still walk everyday ( with crampons) and snow shoe as well. I have to limit the time to about 25 minutes
outdoors.

I have Sjogrens and I am fighting the other syndromes that accompany it. Cough and the thick mucus are also creeping up along with joint destruction and esophageal dysmotility. You need a good rheumatologist. I am no longer a family practice nurse practitioner as I moved to Canada. 14 years ago but oh, how I loved keeping up with the medical conferences sponsored by northwestern university/Chicago and Harvard medical school.

Guaifenesin which has various brand names such as HUMIBID, MUCOMIST, may be others for which I am not familiar, but in combination with cold and flu over the counter drugs. I take twice daily to keep the respiratory tree moist and NO DEXTROMETHORPHAN needed to suppress a cough. Moisture seems to be the key. Vaporization of your bedroom while you sleep may also be of benefit.