I have another thread going about my recent scare of loud ringing in my one good ear. I'm went deaf in my left ear several years ago, either from a virus or AI inner ear disease. No one knows for sure. I thought the Plaq. I take might be causing the ringing but the RD doesn't think so, he thinks it may be the disease process. I don't like the sound of that at all. What I need to know from you is, for those of you on Plaq. 400 mg. total or less, have you ever had ringing in the ear or hearing loss? What did your RD say about it? Did the RD change your dosage?
For those of you with various AI diseases, has your hearing been affected at all? How? Did it get better? What did you do about it? Please tell me the details. I'm going to see an ENT next week and I'd like to have as much knowledge as possible before I go. Thank you all.
What would I do without this board?
Jesse, as I mentioned on the other thread, I do not take plaquenil, but I have had intermittent tinnitus, lasting from 2 hours to 2 weeks, over the past year. It is usually more of a problem in the left ear than the right. It has not happened for several months now.
My doctor felt it was the result of my NSAIDS and other meds, and didn't mention the possibility of it being part of the disease process.
Each time it has gone away on its own, so there isn't really anything I've done for it.
And to answer your last question....let's not find out what you'd do without us...we're all here for you!
Marian, would you mind going into more detail about your experience? Has it affected how well you hear after the tinnitus stops or did the tinnitus just never go away? I know everyone's experiences are different, but I'm trying to gather as much information as possible to try and determine my best course, since my RD is was so uncertain how to proceed. He was glad I was seeing an ENT.
Wills, your doctor is right. Unfortunately, there's nothing to be done for the tinnitus. The only thing I've heard of is a masking device that tries to cover the sound, but that doesn't work for everyone. I know what you're dealing with but, having personal experience with everything from static, popping, chirping, roaring, clicking beeping and ringing tinnitus, I can tell you the ringing is the absolute worst. I don't know if I could get used to that. After just two hours of it I was ready to scream, it was so loud. So you can see why I'm desperately trying to make sure this doesn't become a permanent condition.
If any of you would rather PM me, that's OK too. I'm not sure how much information you're all comfortable sharing.
I've been getting it over the past 12 months, pretty randomly. It has had no effect on my hearing that I am aware of.
If anything, my hearing remains overly sensitive. Like many people with fibromyalgia (and perhaps other AI conditions) I am highly sensitive to temperature, vibration, humidity, light and sound. So just put me in a bubble!
When the tinnitus starts up, it just makes all of that even worse.
i'm on plaq 200mg and i haven't had an issue with it...good luck with your dr appt, i hope they can figure things out.Oh Innerglow, I wish I could ask someone to turn down the volume or speak more quietly! How wonderful that would be. I have to constantly say "What? Can you speak up please?" On the other side of the coin, though, it must be uncomfortable to have that sensitivity too. Ouch! I'm encouraged that the tinnitus hasn't made your hearing worse, though.
Jessica, I'm assuming the 200 mg. is once a day. That's what I'm on now until I see the ENT. I hope I won't regret dropping the dose.
I just finished talking to my sister who has been on Plaq. 400 mg. daily for eight years and no ringing, ever. Maybe the doctor is right and it's the disease. Crap.
Hey Jesse,
As I told you before, I had a lot of tinnitus when I was on Plaq. But, thinking back, I was never on plaquenil alone, I took it for about a year until the stomach problems got to bad. When I was on it, I was also on MTX and later Humira was added. Not to mention various and sundry other drugs for pain, sjorgrens, etc. So maybe I shouldn't have been so quick to say it was plaq. Although, I do remember the tinnitus being sooooo much better after I went off it, but it is so hard to pinpoint the real culprit in these things.
I still have intermittent tinnitus. That loud ringing you describe being the worst. I also get a high frequency buzzing that drives me crazy as well. Like Suzanne described I cannot stand it when there is a lot of noise going on. The noise and lights, lots of people, sudden movements, I could go on and on, but I think these are all fibro related. Being in a loud crowded restaurant is almost intolerable for me. The background noise makes me crazy, I start sweating (mostly on my head, great for the hairdo). Then sweat starts to drip down my face, I get very anxious and there goes the evening. Sometimes I can't take it and have to get my husband to take me home. Obviously, these diseases really make me the life of the party....hahaha. Going out for a night on the town, just is not really what it used to be. And, people still ask me why I don't want to go out much, right, and miss all that fun???????????
Oh, geez, I am so sorry, I just digressed to the point of no return. What I started out to say is that if you start to flare, maybe you should take your RD's advice and stay on the 400mgs of plaq.
Please forgive my rambling. I hope things get better for you really soon and that the ENT can figure out what is causing your current bout with tinnitus and is able to treat it.
xoxo
Crispy
Thanks, Crispy. I've pretty much decided to go back up to the 400 mg. if I start to feel too bad. I've felt painful changes already but I'm not convinced it's from the lower dose yet. The fact that the RD hesitated to keep me at the lower dose concerns me. I've read about many of you who have tried lower doses of meds, only to flare badly and have trouble getting back to a comfortable level. Geeze, difficulties at every turn.
I relate very well to your noisy restaurant issues. Any noisy room is torture for me because inside, my head is literally roaring from the deaf ear tinnitus. The kind I have gets louder or softer, depending on my environment. So when I wake up my ear is quiet, but as soon as I turn on the water, TV or whatever, the noise starts and continues to get louder. A noisy room will make my head feel like it's going to explode. Like you I sometimes wonder if it's worth it to go out, but my husband enjoys it and it's really not healthy to hide away, so out I go. I think it's best if you try to continue that too. Good luck to both of us on that front.
I keep a lot of noise in my ears, for at least 13 years, I'm getting hard of hearing now, I have new hearing aides, they have helped. since wearing them the noise has gotten very low. I have bad balance. ever so offen I can move my head and turn sick, real sick to the point that I can't move without throwing up. not even to raise my head to throw up. The last time this happen was in church and I couldn't move. my husband got a trash can out of bathroom and I just sat there for over 20 mins. throwing up. After a few trips to ER and a lot of test all they will say is it's vertigo. tinnitus. Been on Salsalate since 82, pass meds predisone (very high for long time) Cytoxin (not sure of spelling)
Have a great Thanksgiving all
Rusty
Yikes, Rusty! That's awful. It reminds me of what my mom used to say, "No matter how bad you think you have it, there's someone out there having a harder time than you." That vertigo must make your life so difficult. I'm really sorry. I'm glad, at least that you have been able to get some help from hearing aides. There is nothing out there yet that can help with my loss except an implant and I'm not ready for that as long as I can hear out of one ear.
Thanks for taking the time to tell me your history. I had no idea you were dealing with all that.
I don't have the ringing in my ears but what I get is a build up from the psoriasis along the edge and even in my ear canal, so I have to clean it out daily, even 2 or 3 times a day. My hearing is very sensitive, people are amazed at what I can hear. Even with very good hearing I still end up going to people can you repeat what you just said. memeI used to target shoot a lot with no ear protection(we didn't know any better back then!) and, being as I shoot right handed, the noise in my right ear is the worse. I am only on MTX 15mg, folic acid, calcium,vit. D for about a year and haven't noticed any more noise than before. In fact I do not ever remember mentioning the tinitus to any of my Drs.
Tinnitus is Awful. Mine started in March of 2005 ---and has never stopped! I used to pray for just one hour of silence. I have " adjusted" somewhat I'm sure; because in the beginning I was frantic to make it stop. I had just tried Enbrel for the first time, and immediately got bilateral ear infections. Treated with Zithromax which did nothing. then a course of Levaquin( which i would never take again for any reason). The Dr's said" It's not from the drug--it was the infection--it will go away) Right. I also have hyperacusis since then--it does seem like i hear and am bothered by noise no one else is even aware of. I take Klonopin ( only 1/2 mg) at night so I can get to sleep with the RINGING. I believe it helps. I can't take any NSAIDS at all--makes it much worse. It also increases the day after MTX. Soda with aspertame also makes it worse( I drink alot of diet soda)--so I switched to diet coke with splenda. Anyway, I truely just hope for the day when I don't have it--I need to believe that will happen somehow. I hope yours goes away!
lou m. what was the levaquin like that you would never take it again? Some AP docs are looking at that as an AP cure drug, but it's in the very early stages. Apparently when you take it you get the mother-of-all-extremely-painful-just-kill-me-now herxheimer reaction for about 2 weeks and then maybe you're cured! (Or maybe you have to wait 6 weeks and do it again).Well, there is some interesting information coming out here that I really appreciate. It's good to know at least that ringing can come and go for some people and they can still hear, years later. Maybe I don't have to panic so much about it. I've just always been under the impression that tinnitus means either there is damage being done or it has already been done. I'm really looking forward to seeing the ENT next Wednesday. It's been a few years since I've seen one, since I've been told many times there's nothing to be done either for the tinnitus or deafness, but maybe there's something new they can offer. I'll report back when I've seen him. Wouldn't it be wonderful to at least stop the constant noises in our heads? I for one, would hear so much better if I didn't have to try and hear above the racket always going on in there.
Meme, can you explain still needing words repeated, even with very sensitive hearing? Is it that the words sound muffled?
They sound muffled at times, but then I use to work in an area where the damn equipment was so loud!!!!Both of my MD's at the time felt the Enbrel triggered the infection. I know that the double course of Levaquin is what started the tinnitus--it is listed as a side-effect. I felt no effect on RA symptoms while on Levaquin.
GoGo -
Please tell me you have some info/study on the Levaquinn AP approach.
Pip