Is this a symptom?

I never know what is just a symptom of Sjogrens and what I should be more concerned about. A few weeks ago my ear started bleeding, I went to the doctor and he said he didn’t see anything wrong so I shrugged it off. However it’s bleeding again today, is this common? Or should I make another trip to the doctors? I’m kinda sick of going there haha

I have never had that, but that would concern me. My opinion is that you should go back in.

I know what you mean. I never know which symptoms are Sjs and which aren't. And if it isn't Sjs you worry that it is a side effect from drugs. I never know what to think.


this is not linked to any symptom that i am aware of in Sjogrens primary or secondary. I can't see any link to it other than dryness and scratching the ear in ones sleep or sub conciously. Also not a side effect of any standard SS meds I am aware of.

I recommend that you get a second visit to your doctor and if they are still unable to offer a diagnosis for the cause of the bleeding then ask for a referral for a second opinion. But as i said I don't know of any SS link from your brief description.

Try not to panic or stress too much as both make AI diseases worse short term and won't help you get some medical advice on your ear. I guess an ENT consult would be best if your primary care doctor doesn't feel confident of a cause/diagnosis.

Hope this helps steer you a bit :)


I have never heard of this before,, but my tongue bleeds and can bleed a lot, but I would make another appointment at the doctors cheers chrissy


I had one of my ears bleed once, but my Dr. said I had just scratched it.

I agree with the other responses. If it was me, I would see an ENT. They should be able to give you more information about what's going on.


I get Thrush a lot and it makes my tongue bleed. If you do have Thrush there are anti-fungals that can make take care of it. I get it so often I have preventative mouthwash and cream for my lips. But in addition to the dryness I have a med that makes me more susceptible to it, so you may not have to do that.

I have never heard of that symptom but with sjogrens. Who knows for sure. I have been battling odd seemingly non related symptoms for so long I Can even remember. The last year in particular I have been having trouble with my eyes. It was first labled transient vision loss from unknown origin. There are times when these episodes happen half of the vision field in one eye is blacked out. Like a shade had been pulled. After numerous dr. visits and tons of testing the final diagnosis is neuromyelitis optica. Thought to be fairly rare but one common link is sj. and other autoimmune diseases. It’s such a shame that this is a common cause of this eye problem but took a yr. to confirm the diagnosis. I am a firm believer that If in your gut you feel a symptom or problem is sj. related be persistent with your drs. They do not have all the answers not even close. You have to be a pain in their a… to get them to listen. After this not being treated properly there is no way of knowing how much of the vision damage May be permanent. Looking my sight is the scariest thingvyou have ever felt.I was wondering if anybody has either heard of this or been diagnosed with it.any info is good info thanks for listening

I have never had this problem. As a nurse I would recommend seeing a ear, nose,and throat specialist.Do you see a Rheumatologist? If so you might ask him/her.

We have two things going on here.

You must be terrified Sadymay (thats my grandaughters name) Neuromyelitis optica (NMO) is a demyelinating, organspecific, autoimmune disease that preferentially targets the optic nerve and spinal cord. its not a complication of SS. it is a very serious primary Autoimmune disease. Now depending on whether or not you are NMO-IgG positive, along with its target antigen, the aquaporin 4 (AQP-4) receptor really determines where or what will happen with the disease. There are a few docs who will call optic neuritis Neuromyelitis optica without the blood work and the additional symptoms of longitudinal myelitis (LM), with contiguous spinal cord involvement spanning 3 or more vertebrae NMO is classically defined by the presence of both optic neuritis and longitudinal myelitis. Its a tough diagnoses to make until there is actual evidence of myelin damage or aquaporin 4 found. The disease waxes and wanes most of the time and patients respond fairly well to treatment. BUT I would most certainly pull together the best team you can. Both neurological and rheumie. I would get clear distinction as to where you are with NMO-IgG and AQP-4 and most certainly complete spinal MRI's on a fairly regular basis.NMO has a rough 42 month relapse occurrence.

Now that I have said all that horrible stuff, there is Angies situation. When one has an autoimmune condition, we tend to attribute everything that happens to us to the disease. It gets ever more difficult to compartmentalize. Would I be concerned if I didn't have SS? If I didn't have SS and the doc was concerned would I be concerned? Those types of things. Now there are folks like me who have found themsleves in the ICU on dialysis because the pain in my back was from clearing brush and not the Kidney infection I had. Never mind the fact I wasn't passing urine, that was because i was "old'" and dehydrated. We won't even go to the kidney stone episode........ I don't know how to achieve a balance I just know you need to and deal with everything that comes along as it comes. FWIW the bleeding in your ear can come from a sinus condition. Buy a netti pot and use it regularly to keep things moist and clear up there. Ever get a dried booger when you were a kid? And yelled at for "picking your nose" Its all attached to your ear too.

Ruthie- I have a rheumatologist, however he is an hour away and the only one in the area so he pretty much just gives a diagnosis and then sends you back to your family doctor for treatment and follow up. I have made an appt with my family doctor and I will ask him then.
Tj1- I don’t have a netti pot but I do use hydrasense nasal saline spray stuff cuz I do get very dry


I do not have thrush, but my tongue bleeds, even when my mouth is moist, and very dry I have had SS for over 20 years now and do not take any medication except for one pill to sleep at night, but I too should go back to the doc and get something for this

WOW Exjbnz, I'm amazed. To have this for so long and not taking any meds. That is just truly awesome! And it gives me some hope. I'm only 35 and was diagnosed a couple yrs ago. I'm glad I was able to get a diagnose so early. But part of me wonders what kind of shape I'll be in say 10 or 20 yrs down the way. Maybe it would be too bad.

Thanks for sharing Exjbnz! I hope you find out what's going on with you tongue and a fix.

, tj1, Just about everything you said to me in your reply was greek to me. Would you please dummy it down for me so that I know what I now am scared to death of? thank you for your time. You speak very clinically and it is hard for me to understand what you are saying.

Joshedu I feel the same way, I am only 32 and I am terrified that in 10 years from now I will be in so much pain that I won’t be able to work anymore

Sadymay, the possibility of losing a lot of your sight is I'm sure scary. There are different forms of NMO until they do some very specific tests, there is no way of knowing which you have. Some are scarier than others. Have you had any MRIs or gene tests? Without those markers, more often than not. NMO turns out to be a form of neuritis that does not progress. It may replase however. NMO is not caused by SS, it is a primary disease.

I have had mri’s no gene testing.I do not know what one I have I do know I am having alot of spine problems and was told that sjogrens and this disease were somehow linked. I don’t like to do lots of research because it makes me more worried I just try and take the word of the dr. I guess I’ll speak to my dr when I see him next month and question what exactly I do have. Thank you again for your time

Please keep us informed Sadymay. I am sorry to hear of your spinal involvement.

Sadymay I don’t know if this helps at all but I have problems with my eyes too, the left one in particular, it feels like it swells up sometimes and I have to close it a lot, people think I’m winking at them. I do have optic nerve head drusin though so I’m not sure if that’s what’s causing my problems, my left eye also doesn’t adjust to light or darkness as fast as my right does

joshedu said:

WOW Exjbnz, I'm amazed. To have this for so long and not taking any meds. That is just truly awesome! And it gives me some hope. I'm only 35 and was diagnosed a couple yrs ago. I'm glad I was able to get a diagnose so early. But part of me wonders what kind of shape I'll be in say 10 or 20 yrs down the way. Maybe it would be too bad.

Thanks for sharing Exjbnz! I hope you find out what's going on with you tongue and a fix.

Hi it has not been or doom or gloom for me I have gone on and gotten a degree, although I now do not work which I gave up a job I loved, that happened two years ago I was diagnoised with SS at 31 and now I am 52 next month, diet is really important, what has helped me no glueton, no sugar, I only eat what the sun grows, and two fish meals and one meat meal per week, always keep a positive mind, and exercise as much or as little as you can, even if that is very slow, and I do not take medication as working in mental health I have worked a lot with medication, medication causes huge side effects, so I decided for me the side effects were not worth the taking of it,,yes I am in pain,, I rub a gel into my sore joints and muscles have nice hot baths and put lots of oils into the bath for the dry skin now that's a treat and my day starts,,,, and about 3 hours on I feel okay,, so I have very slow starts to the day take it one day at a time,,,don:t forget to laugh, and find enjoyment everyday I worked right up until 50, you can only deal with today do not think too much about the future, as you do not know the outcome, the darkest moment I have had was when I was on life support for 11 days this year due to complications of phumonia and asthma and SS they did not know if I was going to live or die for 4 days, I came through that , you know the mind is a powerful thing I always have believed that I am going to rule SS it is not going to rule me, although I cannot work full time, I would love to work again so later on in the new year I would like to work 2 days aweek some where, keep a positive thoughts,,,,,, it has helped me through many a bad time keep positive, because positivity breeds positivity keep well chrissy

Otitis can cause bleeding of the ear, and people with autoimmune diseases are prone to otitis. However, I agree with everyone else that a second opinion for such an unusual symptom is a good idea. Another possibility is that you had a small cyst that burst. Still, back to the doctor you go and have it looked at. Have your ears been itchnig lately? Crusty stuff in them? Any discharge besides the bleeding? Just things to notice. Let us know what the doctor says.

Angie and Josh…I know this disease is scary and unpredictable but please try to take one day at a time. No one's journey is exactly the same and it could well be that you are among those who don't get worse than "annoying" symptoms. (I hate that phrase though. LOL) We can't know what's going to happen, including getting hit by the proverbial bus. It took time for me too and it still creeps up on me sometimes but the last thing we want to do is give away today worrying about tomorrow. I don't want to sound like a flower child but it really is the only way to stay positive and keep moving sometimes.