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I have taken Plaquenil since September of '01. I started out on the brand name since my rheumetologist at the time said that it is one of the drugs that some people see a difference with generics. I have decided to stick with the brand despite a big difference in co-pay amounts. Well, I get my eyes tested religiously since my rheumetolgist is a stickler about this and won't prescribe it to me without regular proof.
For the past couple of years I'd say, I have had increasing dizziness. I have never had great balance, but I started falling more. Sometimes on ice. Sometimes on the stairs or whatever. I just wasn't feeling very solid on my feet and at times would feel like I was going to fall over and such. About a year ago, my rheumetologist suggested I cut back from 400 mg/day to 200mg/day. I didn't see a difference after a couple of months and was having increasing joint pain so I called him and told him I wanted to go back up. Things have very gradually gotten worse as far as dizziness and balance. I kept relating it to blood pressure or not feeling well and such. I have had a lot of bizarro symptoms such as shortness of breath and a weird eye droop thing for one night. I've had about every test and know that my heart is in pretty good shape and I don't have a brain tumor and didn't have a TIA. My hemoglobin is o.k although my iron level is low and they thought this may be part of the fatigue.
Tuesday I got to work and everything started spining like I was on an amuzment park ride. I called the rheumetologist who told me he could see me in a little over two weeks. My neurologist was out of town and the soonest they could do anything was nearly two weeks. My gp couldn't get me in so I saw another doc in her practice that I like. I went there and was so incredibly sick that I had my head drooped over the exam table resting on my arms. I tried to explain everything and I just started to tear up. She told me that I needed to see a neurologist the next day since it was late afternoon at that point instead of two weeks. She also questioned my depression likely because I was crying. She made a ton of phone calls and the neurologist on call suggested I see a vestibular therapist. I didn't know there was such a thing prior to this. The soonest they could get me in was three days. A vestibular therapist specializes in dizziness and is able to test for inner ear stuff. It is actually in the physical therapy clinic which I found a tad strange. I went home Tuesday and immediately started throwing up due to dizziness. The doc had told me to take meclazine and it helped just a little. The best thing was just lying as still as I could and not moving at all. This is fun when your joints and muscles hurt. I looked pretty pathetic in bed with my bzillions of pillows and a bucket close at hand. It is a good thing I sleep alone in a queen sized bed! I threw up most of the week and have been a tad better today although when I saw the vestibular therapist this morning she was quite concerned.
I know you are thinking... Will this woman ever get to the point? She thinks that I may have permanent inner ear damage from the plaquenil. She said that plaquenil can damage the little hair things inside your inner ear and they don't really repair themselves. This flipped me out because I can't live my life hanging my head over the side of my bed with a bucket! The puking and spinning are worse than the pain and I can't stand it! I haven't been able to work or cook or really do anything. The vestibular therapist ruled out "the best case scenerio, I guess where you have the little crystal thingies that break off and get into the tubes and throw off your balance temporarily until they are worked into another area of the ear where they don't cause problems.
I had no idea that by taking plaquenil after I started experiencing the dizziness that I could be causing increasing damage or I definately wouldn't have done it even as much as I wanted to be on this drug because it has made a big difference for me. Now, I'm scared about the dizziness problem and worried as to what will happen with my lupus activity without it. What have other people who've had to go off of plaquenil been put on?
Well, I have gone on long enough and I need to go lie down anyway.
If you've made it this far, thanks a bunch for listening!
Amy
For the past couple of years I'd say, I have had increasing dizziness. I have never had great balance, but I started falling more. Sometimes on ice. Sometimes on the stairs or whatever. I just wasn't feeling very solid on my feet and at times would feel like I was going to fall over and such. About a year ago, my rheumetologist suggested I cut back from 400 mg/day to 200mg/day. I didn't see a difference after a couple of months and was having increasing joint pain so I called him and told him I wanted to go back up. Things have very gradually gotten worse as far as dizziness and balance. I kept relating it to blood pressure or not feeling well and such. I have had a lot of bizarro symptoms such as shortness of breath and a weird eye droop thing for one night. I've had about every test and know that my heart is in pretty good shape and I don't have a brain tumor and didn't have a TIA. My hemoglobin is o.k although my iron level is low and they thought this may be part of the fatigue.
Tuesday I got to work and everything started spining like I was on an amuzment park ride. I called the rheumetologist who told me he could see me in a little over two weeks. My neurologist was out of town and the soonest they could do anything was nearly two weeks. My gp couldn't get me in so I saw another doc in her practice that I like. I went there and was so incredibly sick that I had my head drooped over the exam table resting on my arms. I tried to explain everything and I just started to tear up. She told me that I needed to see a neurologist the next day since it was late afternoon at that point instead of two weeks. She also questioned my depression likely because I was crying. She made a ton of phone calls and the neurologist on call suggested I see a vestibular therapist. I didn't know there was such a thing prior to this. The soonest they could get me in was three days. A vestibular therapist specializes in dizziness and is able to test for inner ear stuff. It is actually in the physical therapy clinic which I found a tad strange. I went home Tuesday and immediately started throwing up due to dizziness. The doc had told me to take meclazine and it helped just a little. The best thing was just lying as still as I could and not moving at all. This is fun when your joints and muscles hurt. I looked pretty pathetic in bed with my bzillions of pillows and a bucket close at hand. It is a good thing I sleep alone in a queen sized bed! I threw up most of the week and have been a tad better today although when I saw the vestibular therapist this morning she was quite concerned.
I know you are thinking... Will this woman ever get to the point? She thinks that I may have permanent inner ear damage from the plaquenil. She said that plaquenil can damage the little hair things inside your inner ear and they don't really repair themselves. This flipped me out because I can't live my life hanging my head over the side of my bed with a bucket! The puking and spinning are worse than the pain and I can't stand it! I haven't been able to work or cook or really do anything. The vestibular therapist ruled out "the best case scenerio, I guess where you have the little crystal thingies that break off and get into the tubes and throw off your balance temporarily until they are worked into another area of the ear where they don't cause problems.
I had no idea that by taking plaquenil after I started experiencing the dizziness that I could be causing increasing damage or I definately wouldn't have done it even as much as I wanted to be on this drug because it has made a big difference for me. Now, I'm scared about the dizziness problem and worried as to what will happen with my lupus activity without it. What have other people who've had to go off of plaquenil been put on?
Well, I have gone on long enough and I need to go lie down anyway.
If you've made it this far, thanks a bunch for listening!
Amy
