Help!!!
Posted , 3 users are following.
Does any1 suffer with severe ear ache with sjogrens r do dey think dey r related????
1 like, 12 replies
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Notes on Help!!!
margaret22116 lorraine_44171
Posted
Hi. I don't have Sjogrens but have Behcet's which is similar. But yes essentially all forms of vasculitis can affect the ears. I don"t currently have pain but have had and have had tinitus and vertigo.
lorraine_44171 margaret22116
Posted
lily65668 lorraine_44171
Posted
Hi Lorraine, You don't say whether this is recent or if it's an ongoing thing. If it's only just started, you've probably got an ear infection, in which case you need to see your doctor asap.
lorraine_44171 lily65668
Posted
Hi lily it's on going with my right ear it lasts for a few days at a time then disappears as fast as it comes it sometimes can be so severe that even when walking indoors with the slight bit of wind dat hits it(only way I can describe it??)I have been to my gp lots of times and he says der no infection so I'm really confused!!!
deidra40034 lorraine_44171
Posted
Hi Lorraine,
I too have Sjogren's, and have been having issues with my hearig as well. And I have been reading up on Sjogren's and hearing...and it is a thing. I know I can't post the web site here, but you can google Sjogren's and hearing problems, and you can read up on it. Lots of interesting info! I am having problems with my tubes feeling cloged, and can hear my own voice really loud, and the tinnitis is driving me crazy! Let me know if you can find the info, if not, you can send me a private post, and I can give you the site I found if you like. Good luck!
lorraine_44171 deidra40034
Posted
lorraine_44171
Posted
Ok no problem deidra thanks I also feel like the tubes in my neck r getting blocked it feels like my blood is so thick that I can't get through my veins if dat makes sense ????dats the only way I can describe it I have been suffering for the last 3 yrs with numbness and tingling in hands and feet,my arms and legs feel like the have sand bags attached to dem I suffer with fatigue also I was diagnosed with sjogrens about a month ago but up until then have never heard of sjogrens!!i have a nerve biopsy which showed nothing a muscle biopsy but finally the lip biopsy conformed it I'm 28yrs old and sometimes feel like a 70yr old lady with all my aches and pains ????
margaret22116 lorraine_44171
Posted
I wonder what kind of treatment you are getting. We use very similar meds for Behcet's and I am currently symptom free due to treatment.
lorraine_44171 margaret22116
Posted
I was taking Lycra and ampitrituline before I was diagnosed but the only thing I am on now is quinine 300mg for muscle cramps can't get through to my rhumetologist and my gp dosnt know what to prescribe me hoping to get a call from rhume 2day
margaret22116 lorraine_44171
Posted
Yes you need treatment now. These thimgs are only pain control. Your gp can't prescribe for you.
You really need immunosuppressants. I am currently controlled and symptom free with the use of mycopenolate and interfeton. Not sure what is currently used for Sjogren's but a similar range of meds available.
We have a great help/support group on facebook which is private. Do look for one for Sjogren's and join. People on there discuss good treatments good docs in your area etc. Very useful. X
deidra40034 lorraine_44171
Posted
Most likely the first thing they will put you on here in the US is going to be Plaquenil, and Prednisone. I don't remember if I already told you or not, I can't take Plaquenil, due to my eyes. They had to take me off at the end of 3 months as it had already caused damage. Now it is very rare, most can take it with no issues! You would have to see an Opthomologist regularly to make sure your eyes are ok. Usually shows up in the first 3 months. My mom has been on it for over a year for her Lupus, and her eyes are perfect. But the Plaquenil is wonderful, you will feel so much better!!! I know what you mean about feeling old!!! I'm 61, and I feel 101!! I had my muscle test a couple of weeks ago, one leg registered a big fat "0" no response, the other leg they just said was very slow to respond, this was done with needle electrodes. I have neuropathy in both of my feet and lower legs, meaning numb, but tingly, so when I walk, I often don't feel where I step. I already walk with a cane, I guess thankfully, because I am tripping more now. I am having organ damage with my liver, and adrenals, and kidneys, and now my ears so this is not a easy thing. I also am having issues with balance and awful bouts with verigto. Just remember most people with Sjogren's are lucky, and only have a little dry mouth and eyes, and never have what some of us like myself have. I pray you never have to go through this mess!!! XO
margaret22116 lorraine_44171
Posted
It is not caused by an infection in your ears. Vasculitis affects the tubes inside. It is caused by inflammation. Unfortunately there is no way of 'seeing' the inflammation so a general doctor won"t be of help. I am not sure who you see for your Sjpgren's care but you need to ask them about treatment for your ears. Only symptom control will help.