Hi All Any good tips for Sjogrens syndrome with RA? I find my dry mouth and husky voice the most problem. I could sing once badly!! Do any of you suffer ankle pain? Goes well with the feet Lol.
I am 63 and have been diagnosed with RA positive for 18mths now. Luckily my hips and knees are pretty good its just fingers, wrists, shoulders, ankles and feet. Does it always get worse as the years go by?
My consultant put me on PILOCARPINE which helps also biotene products mouthwash and gel for nightime. Good luck and find someone who really understands Sjrogrens.
Thank you I will ask my consultant. xx
I can also recommend Biotene products. I Have RA but Oral Licken Planus too , and the Biotene toothpaste not only helps the dry mouth but seems to have cured my OLP too. I also use Biotene gel for dry mouth, which helps. There is also a Biotene mouthwash, I haven’t used that so can’t comment on that.
Do you get "slits" in the corners of your mouth?
Thx!
That's inter eating. I have oral lichen planus and Sjrogrens and RA. is this a coincidence...... Maybe not....... Mouthwash is good and I get it on prescription too which helps.
Thank you. I will look into that. Good tip
I get really terribly bad dry eyes. I’ve also researched that chronic constipation is also a symptom...
My eyes are dry as well but repeated eye drops daily help with that. Don't get constipation. I am on lefluomide 20mg that deals with that Lol xx
Hello Prettystuffed, I live with RA since 2009 and am in remission since 2014. So no, it doesn't always get worse as the years go by. I hope that you will be one of the many thousands that live a normal active life with RA. I do get dry eyes and mouth from time to time, but never a husky voice (I'm a bit envious). For my eyes, I just put warm cotton wool buds on for a couple of minutes and then massage the eyelids. That helps a lot. All he very best.
Thank you I am hoping that it won't get worse. That I couldn't cope with. I would happily end my life if it did. I never want to be really old anyway. You can have my husky voice free to a good home. !! Thanks for the eye tips. I now get a lot of tingling in my hands and feet have you had this problem? Kind regards Sue
Initially when I had to wear wrist guards, yes. But I found out very quickly that easy exercising put an end to that. Exercising has been the key to my remission, as important as the medication if not more. I am now stronger, physically and mentally, than I was at sixty. Please keep going, stay positive, don't give up. There will be light at the end of the tunnel. All the best and stay in touch.
I also get all the symptoms you mentioned. Dry mouth, husky voice, very itchy sore eyes plus constipation!
Sorry to hear this. Its not nice is it. As regards constipation try Leflunomide Keeps me very regular. Ha Ha.
I'm 50 and was diagnosed with RA 2 yrs ago. (I'm positive that I have had it a lot longer though). I had extremely chronic dry mouth for several years and was told that it was due to my medications. This fully contributed to the deterioration of my teeth! I ended up getting upper denture and its just ruined my life! It was only after the RA diagnosis that I figured out it was Sjodgrens. My feet were my first issue. I had had a surgery for a hammer toe that ended up being a string of 4 surgeries because my bones wouldn't fuse back together. The result of the continued casts and boots on one foot resulted in the need for a knee replacment from the opposite knee overcompensating from my weight for so many months. Then to top that, I can't feel half of my foot from the many nerves being cut. Therefore I am unable to drive safely. This was ALL before I was diagnosed with severe RA. Biotene products did absolutely nothing for dry mouth. My RA doctor prescribed Cevimeline 30mg capsules specifically for dry mouth. I highly recommend this while drinking lots of water. It literally produces saliva. Have dentist prescribe you toothpaste with the extra fluoride in it to prevent your teeth from crumbling away.
Hopefully I can use my info that was too late for me to help you!!
Hi Thank you for your lovely long reply. You have had RA about as long as me. I also think that I had RA and Sjorgrens for a lot longer. You have had an awful lot of problems I hope that things will get better for you. Kind regards Sue
Sorry I get to "journaling" when I get on something that I haven't saw much about. And things are going well. I think Remicade is going to work a while. 😁😁
Also just in case you don't know that people who have one autoimmune disease usually have another one. Sjodgrens is autoimmune also. I didn't know this. My RA doctor diagnosed it on first visit. And I haven't had knee surgery yet and won't until its absolutely necessary. I have had osteoarthritis for years as well as flat feet. My hands and wrists are going to be next. Still trying to get the right medicine for infusions. My side effects have been a nightmare. I'm on 4th biologic now. It takes so long to jump through hoops with my insurance for approval plus you have to wait a while to see if drug works
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