Lupus Medication

Posted by covidstinks2023 @covidstinks2023, Jul 1, 2023

I was put on 100 mg of Plaquenil for Systemic Lupus. For 5 weeks I did great and then side effects began with weird headaches and nerves twitching in my face. When I backed off the Plaquenil to every other day, the issues got better but are not completely gone. The doctor told me to continue on the every other day. I am ULTRA sensitive to medicine. Can anyone recommend a medication that I may suggest to my Rheumatologist that is mild for Lupus when I got back in a couple of weeks? I also am awaiting bloodwork back to see if my thyroid medicine (Methimazole) could be the culprit causing medication induced Lupus. Thank you so much. God Bless!

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paktoledo | @paktoledo | Jul 1, 2023

I am in the same boat! Plaquenil can cause strange symptoms!
Keep sharing the boards. I am going to ask my Rheumatologist to decease the amount of Plaquenil I take. I have read it can contribute to neuropathy. My Neurologist told me that!
I was just diagnosed with PN in April, 2023. And, my symptoms are getting worse! People with Lupus can also have an increased chance of developing Neuropathy (PN). Hope this helps, Pat!

John, Volunteer Mentor | @johnbishop | Jul 1, 2023

Here's some information I found on the Lupus Foundation of America website.

"Hydroxychloroquine (Plaquenil) is the most common antimalarial for lupus. If you can't take hydroxychloroquine, your doctor may recommend chloroquine (Aralen®). These medicines can be taken as pills or liquids."
--- Medications used to treat lupus: https://www.lupus.org/resources/medications-used-to-treat-lupus

covidstinks2023 | @covidstinks2023 | Jul 1, 2023

In reply to @johnbishop "Here's some information I found on the Lupus Foundation of America website. "Hydroxychloroquine (Plaquenil) is the..." + (show)

Thank you so much! Blessings.....

SusanEllen66 | @SusanEllen66 | Jul 1, 2023

@covidstinks2023 your post is timely for me too!
I’ve been taking that stuff for a year for autoimmune issues. I told my rheumatologist that I think it’s causing me problems but I can’t be sure. She agreed to let me stop taking it for a while and see if anything changes. I had to really be insistent though.

covidstinks2023 | @covidstinks2023 | Jul 3, 2023

In reply to @SusanEllen66 "@covidstinks2023 your post is timely for me too! I’ve been taking that stuff for a year..." + (show)

SusanEllen66: Did you wean yourself off the Plaquenil or just stop taking it? I am on 100 mg every other day. Can you tell a difference since coming off? Thanking you in advance. Blessings & Prayers.....

jerrysgirl3 | @jerrysgirl3 | Jul 4, 2023

In reply to @covidstinks2023 "SusanEllen66: Did you wean yourself off the Plaquenil or just stop taking it? I am on..." + (show)

Covid stinks - why did you cut back on Plaquenil dose? I feel like I started having issues when I started it. On 200 mg/twice a day

covidstinks2023 | @covidstinks2023 | Jul 4, 2023

In reply to @jerrysgirl3 "Covid stinks - why did you cut back on Plaquenil dose? I feel like I started..." + (show)

Jerrysgirl3, I was only on 100 mg (1/2 of a 200 mg tablet) once a day to start with. I am ULTRA sensitive to medication. Did great for about 5 weeks and then started with wierd headaches, facial twitching, nausea & palpitations. I am now taking 100 mg every other day and weird headaches continue & mild palpitations. HOWEVER, it has helped my pain and inflammation greatly. I would like to come off of it to be honest. I see rheumy this month for advice. Blessings.....

seniormed | @seniormed | Jul 4, 2023

In reply to @covidstinks2023 "Jerrysgirl3, I was only on 100 mg (1/2 of a 200 mg tablet) once a day..." + (show)

When I used Plaquenil it was recommended to have ophthalmology checks at start and yearly. Good idea to keep
track of total dose after long term use.

covidstinks2023 | @covidstinks2023 | Jul 4, 2023

In reply to @seniormed "When I used Plaquenil it was recommended to have ophthalmology checks at start and yearly. Good..." + (show)

Yes. I was made aware of that by my eye doctor. Thank you for the reminder. Happy 4th of July and God Bless You & America!

jerrysgirl3 | @jerrysgirl3 | Jul 5, 2023

I was started on Plaquenil with no issues. I had a severe hives rash and some swelling in my hand. No fatigue or joint pain. Put on 200mg 2x/day. Why was I put in such a high dose with no symptoms ? For last two days was having pain in my wrists. Then severe aches and pains in my muscles joints and bones. Felt like I had a high fever. Finally yesterday I couldn't take the pain any longer and took 2 Medrol steroids. Suddenly I broke out with a fever- highest 101.5!! Was freezing for a long time when it suddenly switched to being hot. Woke up twice through the night to pee and had to peel my top off -covered in sweat. Feel like there's a tight band across my forehead. Skin feels weird....I don't know if I'm sick or if it's an immune response to the Plaquenil. I want to stop it!!

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