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Plaquenil and LEMS?
Hey all!
As some of you may know, I was recently diagnosed with Lupus along with LEMS.
I started a medication (about 7 months ago) designed for Lupus and other autoimmune diseases that some of you may be familiar with- Plaquenil or Hydroxychloroquine
I have found that it has helped me immensely although it took several months for me to feel that it made a difference.
Although I still have major problems with fatigue, I have found it helps me a little bit but it also has helped a lot with some of the joint and myofascial pain I have.
Has anyone in the LEMS community tried Plaquenil? If so, what was your experience with it?
If you did try or continue to take it, do you have other conditions aside from LEMS?
Looking forward to hearing back from you!
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2 Replies
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Hi Ashley,
I was put on plaquenil or hydroxychoroquine for my psoriatic arthritis and it actually caused my LEMS symptoms to flare- my head became extremely heavy and I experienced numbness in my legs and face because of it. I hadn’t been diagnosed with LEMS yet so this medication was the key to my doctor figuring out why I had been experiencing leg weakness and periodic numbness for years. I actually wrote a column about my experience: A Cautionary Tale about Hydroxychloroquine’s Side Effects.
I’m glad you don’t have the same LEMS symptoms I had caused by the med; but I wonder if you are experiencing the LEMS fatigue so many of us go through. Your side effects may not be as bad as mine were because your IVIG is doing it’s job. I had to immediately stop taking it but am grateful to this day for having been prescribed it because it helped with my rare disease diagnosis!
As a side note, I can’t take anything for my psoriatic arthritis other than NSAIDS or steroid shots when things are too painful because most all of the medications are known to cause issues with demyelinating diseases. LEMS isn’t in that “group” of diseases but the nerves are still affected and thus there is that correlation of issues. IVIG is given when/if psoriatic arthritis starts to inflame the organs, so, being on Ig, I’ve got things covered the best I can.
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I was on plaquenil for years before lems diagnosis with great results. I only discontinued when I started chemotherapy. Once completed I resumed but had cardiac side effects unfortunately. Just started Imuran and waiting for it to work😿 Dr said could take up to 6 months 😡
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