I can't sleep, the ringing in my good ear is keeping me awake. Some of you may remember I was awoken with loud ringing recently which the RD and ENT think is being caused by the disease process and not Plaquenil. I'm not so sure. I had cut my Plaq. dose in half but had to go back to the full dose after four days because of the pain. A couple of days later the right ear started ringing again, very softly and continues 24/7. Everything I read says Plaq. can cause ear ringing and to tell the doctor immedately if it happens. But both doctors say to stay on it! I don't know what to do. I moved my RD appointment up a month earlier to mid Jan. to discuss changing meds but in the meantime, I want to try and cut back on the Plaq. again. I have to see if I can stop this ringing. Oh, and the tinnitus in my deaf ear is worse too, but since that ear is already useless, it doesn't matter that much, it's just a bit more annoying. The RD gave me prednisone to take if my hearing suddenly goes, but the ENT said to take it even if I just have loud ringing more than 24 hrs. Since this is soft ringing, no pred. yet, he said. So I just wait and see if it gets worse? Or deafens me completely? I have to do something.
I'm afraid I'm going to have pain from cutting back the Plaq. again, but I'm trying to tell myself what happened last time was in my head because it seems to me others have stopped it with no ill effects for a few weeks. Anybody, please, if you have experience with stopping/cutting back on Plaq., tell me how long before you felt a change in your symptoms. Maybe I can tough it out if I can convince myself that the pain shouldn't be starting so soon. I'm also going to start taking Aleve to help with inflammation, since that is what the pred. would do on a larger scale. If it's inflammation causing the ringing, maybe that will help. I'm already planning to see a neuro after the holidays too, but I have to do something NOW. Last question. Have any of you being given a change in your meds over phone or is it always during an office visit? I hesitate to start something new before we leave town for the holidays in case there's a bad reaction, but.......oh, I just don't know. Excuse my language, but right now I feel like I'm screwed.
Oh you poor dear! I wish I had some answers for you, Jesse. You're right about the info on plaquenil. I checked my side effects sheet and it's right there in black and white. Did you notice any decrease in the ringing when you cut back the dose last time? I think the best thing to do would be to call your dr. and ask if you can start the preds right away... if it is inflammation causing the ringing then it needs to be addressed quickly.
Jesse, just a thought. Has your blood pressure been checked? The reason I ask is that when my bp wasn't controlled my ears would ring. All it would take back then would be the slightest exertion... bending over to pull on my socks... and the ringing would start.
Have any of you being given a change in your meds over phone or is it always during an office visit?
In Canada, changes in meds are done during an office visit. When it comes to prescription renewals, my dr. will do a one time fax to the pharmacy and then his office calls me to book a non-urgent appointment to discuss my meds.
Jesse, I hope you find some answers and relief very soon. You're in my thoughts.
Thanks Punkie. After I posted I was able to fall asleep by having the TV on to drown out the ringing, but I feel awful this morning with a lot of pain and what feels like swelling on my left side (I don't usually swell). My BP has always been very low so I don't think that's the issue. I called the ENT yesterday about starting the pred. but he said no, not unless it gets louder. It's still there, but quietly ringing, as it has for the last several days. I feel like I can't lower the Plaq. now like I planned because I'm having pain as it is. It's either because of my period starting soon or too much salt in the Christmas party food last night. I don't think the salt has anything to do with the ringing because I've had it for several days beforehand.
I don't know. I have to go do my volunteer shift this morning and I'll try to decide what to do after that. Thanks for your post and help. I appreciate it.
I've been taking Plaquenil for thirteen years now, with no ringing. However, shortly after I was diagnosed, my RD prescribed a drug called Salsalate for me that caused horrible ringing. I quit taking it, and the ringing was gone within a day. Salicylate based NSAID's like Salsalate and aspirin are notorious for causing ear ringing in high doses. If you're taking any of those, that could be the problem.Jesse I am so sorry to hear the ringing is back. I really don't want to advise you whether or not to stop the plaq since your doc says not to. But my RD said it takes a couple of months for the plaquenil to get out of your system.
In answer to your question about changng meds over the phone, I think it depends on your relationship w/your RD and how long you have been a patient. Mine has done that for me on occasion, but I have been seeing him for 5 years.
Good luck and I hope you are able to get this resolved quickly.
Hi tree, thanks for your post. The only drugs I take are the Plaq., MTX and the folic acid supplement for the MTX. Occasionally I'll take Aleve or if pain is really bad, naproxen. My sister has also taken Plaq. for eight years with no problems. It could be that the doctors are right, it's not the Plaq. but it just seems like such a coincidence. I think I'm going to up the Aleve and lower the Plaq. just to see if the ringing stops. I keep going back and forth on this because I'm just not sure what to do. Maybe I would need to stop the Plaq. altogether but I know the RD would have a real problem with that, so I guess I won't do that yet.
Crispy, thanks for the info on the Plaq. If it stays in the system a long time I shouldn't be feeling pain soon after I lower the dose, but I do, even just a few hours past my normal time to take it. If I forget it, my body reminds me. But that doesn't jive with others' experiences so I'm still not sure if it's partly just anticipating pain, so it comes. I'd still like to hear from people who have stopped or lowered their Plaq. and how long it took to feel a difference, if any.
I've only seen my RD for 6 months but if this doesn't improve by next week and I decide to take a chance on starting a new drug before the holidays, I will call and see if he'll switch my drugs over the phone.
Punkie, I just realized I never answered your question. The last time I lowered the Plaq. the ringing had already stopped but I lowered it anyway because I was so freaked out and afraid it would come back. It didn't come back except for very shorts bursts of time, a few times a day, until I went back on the Plaq. but the ringing now is very soft and constant. That's why I want to try reducing it again. jesse im sorry to hear about the ringing in your ears that really sucks! i hope your pain doesnt come back, it does seem like we are all on a see saw, trying to find that right balance to keep us from teetering from pain to side effects! how much plaquenil do you take? or were you taking?
Hugs, Jesse, and keep researching!
Pip
I started getting loud ringing in my ears when I was taking high doses of naproxyn also. I still have the problem, even though I have been off naproxyn and all NSAIDs for over a year now.Aspirin and ibuprofen give me loud ringing; naproxen, not so much unless I'm slamming big doses for more than a few days at a time. Haven't noticed anything new since adding plaquenil (well, at least not ringing ears, anyway!).No luck talking to the doctor today or even getting an appointment this week. I'll try and get the doctor again tomorrow. In the meantime, I think maybe the naproxen is helping a little bit. My neck is not quite as stiff and sore and the ringing is softer and seems to stop briefly here and there. I'm thinking there's definitely a link between my sore neck and the ear problem. At least my jaw doesn't hurt today. Hopefully the RD will have more help for me tomorrow.
Thanks for your help everyone.