Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
The symptom that finally got me diagnosed with Sjogren's was sudden and acute hearing loss. But there doesn't seem to be much data connecting hearing loss with Sjogren's. I've had other symptoms for years and never put it all together.
Being a musician this has been devastating for me. Although the Dr's were able to restore most of hearing with Prednisone treatment and I'm still able to perform, I fear what another flare up might bring.
I started taking Plaquenil 2 weeks ago which is too soon to know if it's working.
Being a musician this has been devastating for me. Although the Dr's were able to restore most of hearing with Prednisone treatment and I'm still able to perform, I fear what another flare up might bring.
I started taking Plaquenil 2 weeks ago which is too soon to know if it's working.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I wasn't started on Prednisone for a month. It never helped my ear.
Plaquenil never helped me enough. I did a 5 month stint on Methotrexate before my liver enzymes skyrocketed. I am now being treated with Cellcept.
Nothing has helped my ear. My rheumy doesn't know what will help it.
I'm so sorry to hear of your hearing loss. How long has it been?
4 months ago my ears started to feel stuffy and I noticed that my hearing was distorted. I was fortunate enough to have a PPO at the time and got into the ENT right away. Once it was determined that I did have hearing loss the ENT did a series of 2 injections of Prednisone into the ear drum along with oral prednisone. It was a VERY aggressive treatment, but since we caught it within 2 weeks of onset it worked pretty well. He did the ANA (I'm not sure what titer is?) and sent me to a Rhuematologist, but by then I was on an HMO and the referral didn't go through.
Then it happened again 2 wks ago. Since it was now considered recurrent I got the referral to the rhuemy approved. He did blood work and called me with the diagnosis of Sjogren's. I don't see him again for another 3 weeks. So, I've been researching in the internet.
Did you have any other symptoms before the hearing loss? What are your current symptoms?
My hearing loss is almost 2 years ago. It does seem to fluctate and at times is worse than others, but most of the time both ears feel a little stuffy. My current symptoms are dry eyes ( I've had plugs put in the tear ducts to help) GERD, dry and crust stuffy nose, dry outer ears (absolutely make no ear wax anymore) burning throat, dry face and skin, cracks at the corners of my mouth, joint pain, fatigue and occasional swollen lymph nodes. I don't experience dry mouth much at all, but I can sure feel swollen salivary glands under my tongue.
I can go back 10 years before diagnosis with issues: pancreatits, Barrett's esophagus, salivary gland stones, chronic sinusitis, dry eyes, carpal tunnel, plantars fasciitis, and joint pain that was on and off at first. I have secondary Sjogren's as I also have RA/Lupus overlap and suffered for awhile with autoimmune Hashimoto's thyroiditis until I had my thyroid removed. With the Lupus which is very similar to SjS I have sun-sensitivity, malar (butterfly) rash on the face and low white blood count and anemia. I think you can suffer some of this with Sjogren's, too.
I was on Prednisone for 8 months starting at 60mg and very slowly tapering. My ENT never did the prednisone shots in the ear. I think if he would have been aggressive my hearing might have gotten better. I'm sorry the hearing loss has reacurred for you. Do you think he will try the shots again?
If you are researching on the Internet, try looking up Autoimmune Inner Ear Disease. They do suggest prednisone as treatment for it. They also suggest Enbrel which is a biologic drug used for RA and a few other autoimmune diseases, but my rheumy isn't ready to start me on this type of drug yet, not even for the RA.
I hope the Plaquenil works for you. What other symptoms are you having? Is your hearing loss the same in both ears?
Occasionally one will act up but with the parotid right next to the eardrum doesn't help. Plaquenil not steroids helped mine. I went off steroids as fast as I went on them , we don't like each other.
I had my hearing tested the same day and results were astounding my hearing was as good as a new borns. I've always had incredible hearing it never gets worse.
I'd imgaine how swelled the prarotid gets is how bad your ear and hearing acts up.
Bad feeling for sure......makes you feel like you have water in the ear.
My hearing loss is only in my right ear. We did the shots and oral prednisone the 2nd time and it worked. It worked so well that my hearing is almost back to normal.
As for other symptoms, I have to dry eye, fatigue (which we thought was due to my anemia) and brain fog. I also lost some sense of smell which I'm sure is connected somehow. This is all so new to me.
I lost my sense of smell, too. Again it is intermittent. At times much worse than others.
I started out with minimal Sjogren's symptoms, but as time goes by and the disease has progressd, so have the symptoms. But not all of us are the same. I hope you continue to keep things under control.
Best regards,
mamawjo