Problems with Plaquenil ? | Arthritis Information

 

I've been having some scary things happen to me lately and wonder if the Plaquenil has anything to do with it. Has anyone had problems with Plaquenil? I hear it's one of the safest dmards which makes me wonder why I'm feeling like this. I've been on it for over a year. I looked back at my journals and see I've had a lot of episodes of wierd neurologic stuff ... My legs feeling week where I felt worried to wAlk too far for fear of falling , tremors, getting off balance spells throughout the day and breathing problems. I've taken breathing tests that came out fine, seen a neurologist and had an MRI which came out fine , he said he thought tremors had to do with meds I'm on and being off balance he wanted to refer me to an ear nose throat specialist thought maybe there is swelling on inner ear possibly.

Lately I feel like I get these warm flashes in chest /head get off balance for a second and can't get my breathing to work. Feel like I can't get my lungs to work like I have to make myself take breaths. When I go to swallow I have to cocentrate on swallowing.

I'm sorry this is so long but wonder if anyone has had these things happening to them? I'm seeing a new pcp next Friday . I've been so worried I'm noticing my anxietys gotten worse which doesn't help. I just have these horrible feelings of I'm just gonna die. I feel like the drs since they've done xrays, MRI and can't see anything will just shrug me off again. Somethings not right and I'm pretty scared about it .I had issues with itching, nausea and fatigue when I first started taking it, but the problems went away within a couple of months. those would be unusual side effects for plaquenil but the only way you would know for sure would to stop the medKlynn, could your disorientation be the anxiety itself?  I know this has been an issue with me of late.  When was your last cardiac workup?  It may not be the meds at all and we do tend to attribute just about everything to the RA or the meds.

I have always felt it was right to listen to your body, no one knows better than you.  Have a long visit with your PCP and go armed with a notebook, pen and a list of questions.  It may help to take an advocate with you to take notes while you discuss things with your PCP, this helps me.

I wish you all the best, Klynn, and I sincerely hope you find your answers and get some peace back to your life!

Thank you Waddie. I've wondered if anxiety is the culprate or making things worse. I almost went to the ER this morning, I had it happen again. I'm trying to hang on until tomorrow to see my pcp . I hate how scared I get at times.

I hope you are hanging in there yourself. Kelly - I've been on Plaquenil for over a year and have not had the breathing problems, etc. that you are talking about. Hopefully you got some answers with your PCP today. Don't let them push you off. I've had some REALLY weird stuff going on ever since I was diagnosed and have just kept pushing and pushing for answers. Some things have been connected with RA, some maybe but not sure. If you get really anxious just go to the ER - sometimes that's the best place to finally get someone to pay attention and start doing the necessary tests. Hope you are feeling better.Well I had another episode. My pcp and rheumy dr could not fit me in today so I went to the ER. After xrays and tests they said everything looks normal and said it may be plaquenil after looking up the side affects. ( I couldve done that instead of sitting in the Er for 4 hrs)My ra dr told me to stop taking plaquenil until I see her next week. It's frustrating isn't it? Feeling like no one takes you seriously or just blaming it on the meds... Maybe it is the meds? I guess I'll stop but remembering what my ra wad like before plaquenil really scares me and starting a new drug , well that scares me too. Oh well, I just have to keep trying like everyone says, just seems like it should be easier you know? Thanks for listening. Oh that stinks. I had bad fatigue my gums swelled and turned purple. The purple was just pigmentation but it was embarassing to me. I had alot of mouth sores. I think I even fell down alot. More because of my vision. I think it made me feel really dry. I have heard it is good for Sjorgren's. Not for me. I had thrush all of the time when I was on it. I really spent most of my time in bed when I was on it. Not comfortably I might add. I was on it for three or four months. Which seriously for me that was a long time. I am an allergic type person. The deciding factor for them to take me off of it was my sinuses were bloodraw and I had alot of mouth sores.

Kelly, I am sorry your symptoms were bothersome enough to send you to the ER but glad that you went rather than risk the chance of something very serious developing.

The only problem I had with Plaquenil was when I stopped taking it: my dry eyes and mouth worsened within a very short period of time. It is my rheumatologist's drug of choice for Sjogren's syndrome as well as being the drug recommended by many other physicians.

I hope you get your answers very soon and that you are at rest in your mind for now.

Cheers, Shug
It really means a lot to be a part of this forum and people taking the time to write back, thank you! I'm lying in bed typing on my I phone at the moment. A little better today but I am seriously wondering if my body is going through withdrawls from being off the plaquenil. I now am very light headed, still weak and headaches now. I tried going to the store and had to leave early I was so light headed and exausted, that's all I've done today. Everything I read about plaquenil says you can stop without tapering but I seriously wonder if that's the case for me, it's been about 6 days off of it now.

Thanks again for your replies, any bit of information helps a lot and it's nice to have support from others going through similar things I stopped plaquenil without tapering...didn't have any problems.  I know everyone is different, but just thought I'd let you know. I've stopped and restarted plaquenil with no problems other than a bit of itching when restarting it. Kelly, how are you doing? while taking plaquenil I started having terrible pains under my rib area and difficulty swallowing gp thought the med was affecting my gallbladder and passed it on to rheumy who took me off immediately, I was very fatigued for several days and am on methotrexate now helping with ra but stomach issues are starting again...I hope you feel better soon klynn. i took plaq for two years. at my eye exam a year ago, i had retinal changes and my doctor strongly advised me not to take the plaq if i didn't have to. i chose to quit as i value my eye site. don't let this scare you as plaq is a wonderful drug and it did so much for me over the course of the two years. and the doctor really could not even guarantee me that it was from the plaq. he just felt that plaq would not help matters. good luck.Update:

saw new pcp and really like him, he actually called my rheumy and called me at home if you can believe it! He has me on anxiety meds which helped a whole lot but I am so extremely fatigued and can't figure out why. He thinks there's something else going on and not the RA but hopes it will burn off. I tried going for the first time to the grocery store by myself . I couldn't finish shopping I left came home and just collapsed in bed . I slept two hours I am still so exausted and don't know how I'm supposed to go to work tomorrow. I've been out a week and we need the money but how am j gonna make it. I don't understand what's happening . My body feels so weak . Anyone have extreme fatigue? klynn, has anyone draw blood? Maybe you are anemic? That could cause extreme fatigue or maybe it's just the RA causing it. When do you see your rheumy again? Or the new PCP? Yes, I've had my blood drawn many times this week. I see my rheumy tomorrow. I just opened a lab test that came in the mail today with a note saying my thyroid is a little abnormal so I'm going to call my pcp tomorrow and talk with him about that. Maybe possibly that has something to do with this? You're right though, I wondered about maybe being anemic, but no ones said anything about it.Kelly, hope you get some answers soon and start to feel better. Fatigue and the RA flu simply devastating.

Best wishes, Shug
So here I am , 2 1/2 weeks later with not much progress. I get hit with these waves of extreme weakness in my upper shoulders and neck area. I now have an anxiety med I am taking when it hits to help me not panic but have been out of work now for too long. My pcp wants to see if this will " burn off" but I'm really tired of being weak and in bed all day. Just needed to vent a little, I know we all have different things we all are going through. If anyone has any ideas they may not have thought of please let me know. I've been researching the Internet like crazy, ran into myopathy maybe??? And so many other possible immune disorders it's mind boggeling.
Thanks

KellyKelly, have you considered getting a second opinion? Sometimes having a "new"set of eyes look at the problem and another mind examine the problem presents a solution, not necessarily a novel solution, but still a solution.

I send you best wishes for making progress. Shug

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