1. < Autoimmune Diseases

Advice! Civemeline only works once a day. Pilocarpine not work

Posted by cblue @cblue, Dec 22, 2023

Has anyone else been a non responder to this important medication for salivation in Sjogrens? If so did you find a solutions?.Pretty miserable between that and other symptoms. Xylimelts provide some moisture, but does not protect teeth or help with swallowing food.
Also- Thinking of applying for a consultation at Johns Hopkins or Mayo. Does Mayo have a rheumatology focus in one of thre clinic?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Dec 22, 2023

Hello @cblue, Sorry you didn't get any responses in your other discussion - Cevilemine worries again: https://connect.mayoclinic.org/discussion/cevilemine-worries-again/. I did a search of Connect for Pilocarpine and found that there have been 44 comments on the drug. Here is the search results link if you want to read through the comments to see if any help - https://connect.mayoclinic.org/search/comments/?search=Pilocarpine.

Mayo Clinic has some treatment information along with some lifestyle and home remedies that might be helpful if you haven't already tried them - https://www.mayoclinic.org/diseases-conditions/dry-mouth/diagnosis-treatment/drc-20356052.

I was diagnosed with polymyalgia rheumatica (PMR) at Mayo Rochester's rheumatology. If you would like to seek help at Mayo here is a link with the contact information - http://mayocl.in/1mtmR63.

REPLY
1 reply
cblue | @cblue | Dec 22, 2023
In reply to @johnbishop "Hello @cblue, Sorry you didn't get any responses in your other discussion - Cevilemine worries again:..." + (show)
@johnbishop

Hello @cblue, Sorry you didn't get any responses in your other discussion - Cevilemine worries again: https://connect.mayoclinic.org/discussion/cevilemine-worries-again/. I did a search of Connect for Pilocarpine and found that there have been 44 comments on the drug. Here is the search results link if you want to read through the comments to see if any help - https://connect.mayoclinic.org/search/comments/?search=Pilocarpine.

Mayo Clinic has some treatment information along with some lifestyle and home remedies that might be helpful if you haven't already tried them - https://www.mayoclinic.org/diseases-conditions/dry-mouth/diagnosis-treatment/drc-20356052.

I was diagnosed with polymyalgia rheumatica (PMR) at Mayo Rochester's rheumatology. If you would like to seek help at Mayo here is a link with the contact information - http://mayocl.in/1mtmR63.

Jump to this post

Thanks for all this. I’ll look it over and see what my options are - if any. I did find what seems to be an abstract of the pharma company’s application for civelimine . It looks like in the first trial 76 percent of participants in treatment group had improved in saliva ( & self reported scores on dry mouth). Whatever I found didn’t list percentages in phase 2& 3. Anyway, I know there is no other med available; but in a multi disciplinary treatment facility like Mayo they may be able to figure out why I
Respond only once a day. It’s working in the sense I get the sweating, but no measurable saliva . Thanks so much for the info.

REPLY
cpd54 | @cpd54 | Dec 23, 2023

I also have Sjogerns and was suffering with dry mouth and eyes. Now, this is just my experience and you won’t find much about it on the web, but I started taking Vitamin K2 in the subform on MK-7, for osteoporosis. I noticed that my mouth and eyes were not as dry. I Did a little research and couldn’t find anything about it increasing saliva but I did find articles along these lines, https://www.metropolitandentalcarenyc.com/blog/vitamin-k2/.
Not saying this would help you but it did me.

REPLY
cblue | @cblue | Dec 23, 2023

thanks I was taking vitamin k2 for osteoporosis; have some at home probably can't hurt and might help. I think I saw you or someone else post about this earlier. Thanks again, C.

REPLY
Please sign in or register to post a reply.