1. < Autoimmune Diseases

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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covidstinks2023 | @covidstinks2023 | Jul 5, 2023
In reply to @jerrysgirl3 "I was started on Plaquenil with no issues. I had a severe hives rash and some..." + (show)
@jerrysgirl3

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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jerrysgirl3, God Bless You! I do know you can run fever with Lupus and have wrist pain. I agree, I question the high dose unless your autoimmune markers were high for Lupus. I say start low and build up with most medicines. It's easier to build up to a higher dose than to come back down. I started out on 100 mg daily and for about 5 weeks I did great. Then I started having wierd headaches (sharp pains in my head/tightness on the sides of my head) and the nerves (trigeminal I think) were jumping in my face on the daily dose of 100 mg. I called the nurse and told her it was helping with my pain and inflammation from Lupus, Arhtritis and Fibromyalgia, BUT, the other things started. I started taking 100 mg every other day. I am feeling better, but the symptoms are not completely gone. I see the rheumatologist this month and perhaps I can try something else. Praying for you to get better soon!

REPLY
2 replies
jerrysgirl3 | @jerrysgirl3 | Jul 5, 2023
In reply to @covidstinks2023 "jerrysgirl3, God Bless You! I do know you can run fever with Lupus and have wrist..." + (show)
@covidstinks2023

jerrysgirl3, God Bless You! I do know you can run fever with Lupus and have wrist pain. I agree, I question the high dose unless your autoimmune markers were high for Lupus. I say start low and build up with most medicines. It's easier to build up to a higher dose than to come back down. I started out on 100 mg daily and for about 5 weeks I did great. Then I started having wierd headaches (sharp pains in my head/tightness on the sides of my head) and the nerves (trigeminal I think) were jumping in my face on the daily dose of 100 mg. I called the nurse and told her it was helping with my pain and inflammation from Lupus, Arhtritis and Fibromyalgia, BUT, the other things started. I started taking 100 mg every other day. I am feeling better, but the symptoms are not completely gone. I see the rheumatologist this month and perhaps I can try something else. Praying for you to get better soon!

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The problem is, I never had any issues other than the hives rash (which turned out to be food exacerbated allergies) and a little swelling on the top of my hand. I will call rheuma but that is a whole thing unto itself. 🙁. I don't think I should be on 400mg/day!! And I'm also on leukemia meds. Have call into oncologist who I'm supposed to see today. I guess I should wear a KN 95 mask to protect other cancer patients. Think I might have bladder or kidney infection. Pain and difficulty urinating. (Along with low grade fever which is going up again )

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reets70 | @reets70 | Jul 5, 2023

I’ve been on Plaquenel for 18 years. Started on 200 mg twice a day, and methotrexate as well. Never had an issue. I’m now on 200 mg once a day, no methotrexate for the last ten years, see my eye doctor every year also. Lupus symptoms are good, but now I’m fighting PMR, have lots of joint issues, but I’m 83 and still going strong.

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jerrysgirl3 | @jerrysgirl3 | Jul 5, 2023
In reply to @covidstinks2023 "jerrysgirl3, God Bless You! I do know you can run fever with Lupus and have wrist..." + (show)
@covidstinks2023

jerrysgirl3, God Bless You! I do know you can run fever with Lupus and have wrist pain. I agree, I question the high dose unless your autoimmune markers were high for Lupus. I say start low and build up with most medicines. It's easier to build up to a higher dose than to come back down. I started out on 100 mg daily and for about 5 weeks I did great. Then I started having wierd headaches (sharp pains in my head/tightness on the sides of my head) and the nerves (trigeminal I think) were jumping in my face on the daily dose of 100 mg. I called the nurse and told her it was helping with my pain and inflammation from Lupus, Arhtritis and Fibromyalgia, BUT, the other things started. I started taking 100 mg every other day. I am feeling better, but the symptoms are not completely gone. I see the rheumatologist this month and perhaps I can try something else. Praying for you to get better soon!

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Hi. I called rheumatologist to tell them I was cutting one pill out and not feeling good. Got a call back later on (after I had taken that one pill) to stop both pills!! Probably shouldn't have been on them to beefing with since it seems that my major issue, the hives, were food allergy related, not lupus. Will see doc at end of month. Hope no damage was done to me.....

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 5, 2023
In reply to @jerrysgirl3 "Hi. I called rheumatologist to tell them I was cutting one pill out and not feeling..." + (show)
@jerrysgirl3

Hi. I called rheumatologist to tell them I was cutting one pill out and not feeling good. Got a call back later on (after I had taken that one pill) to stop both pills!! Probably shouldn't have been on them to beefing with since it seems that my major issue, the hives, were food allergy related, not lupus. Will see doc at end of month. Hope no damage was done to me.....

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@jerrysgirl3 I’m so sorry you’ve had this difficult episode. But, I am glad you called the rheumatologist. Please keep a close check in your temperature tonight. If it gets any higher, you should go to the ER to be checked for a UTI. I’m also glad you have a call in to your oncologist. You know that a temp can be of concern to them. (I was an oncology nurse so your symptoms bother me.)
Can you get back to me in the morning and tell me how you are?

REPLY
2 replies
SusanEllen66 | @SusanEllen66 | Jul 6, 2023
In reply to @covidstinks2023 "SusanEllen66: Did you wean yourself off the Plaquenil or just stop taking it? I am on..." + (show)
@covidstinks2023

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.....

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@covidstinks2023 I just stopped. However, it was only for a short time because my joint pain came back almost immediately after I stopped taking it.
So, I am taking it again as before with no hope of ever stopping. Obviously, I need it…
I was trying to eliminate a drug or two. Instead, I was just prescribed 2 new ones by my neurologist. Ugh!

Blessings!

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jerrysgirl3 | @jerrysgirl3 | Jul 6, 2023
In reply to @becsbuddy "@jerrysgirl3 I’m so sorry you’ve had this difficult episode. But, I am glad you called the..." + (show)
@becsbuddy

@jerrysgirl3 I’m so sorry you’ve had this difficult episode. But, I am glad you called the rheumatologist. Please keep a close check in your temperature tonight. If it gets any higher, you should go to the ER to be checked for a UTI. I’m also glad you have a call in to your oncologist. You know that a temp can be of concern to them. (I was an oncology nurse so your symptoms bother me.)
Can you get back to me in the morning and tell me how you are?

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@becsbuddy had another nights terrible sleep. At around 2:30 am woke up. Was so cold I couldn't stop shivering and shaking!! No fever. Then at 4:30 am woke up sweltering hot. I feel like my body smells like it's rotting 😳. I keep getting this whiff of something, and it's me!!! Seeing primary today. He's good at testing.

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jerrysgirl3 | @jerrysgirl3 | Jul 6, 2023
In reply to @covidstinks2023 "Jerrysgirl3, I was only on 100 mg (1/2 of a 200 mg tablet) once a day..." + (show)
@covidstinks2023

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.....

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@covidstinks2023 i started having issues at 5 weeks as well...I find that strange...

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jerrysgirl3 | @jerrysgirl3 | Jul 7, 2023
In reply to @becsbuddy "@jerrysgirl3 I’m so sorry you’ve had this difficult episode. But, I am glad you called the..." + (show)
@becsbuddy

@jerrysgirl3 I’m so sorry you’ve had this difficult episode. But, I am glad you called the rheumatologist. Please keep a close check in your temperature tonight. If it gets any higher, you should go to the ER to be checked for a UTI. I’m also glad you have a call in to your oncologist. You know that a temp can be of concern to them. (I was an oncology nurse so your symptoms bother me.)
Can you get back to me in the morning and tell me how you are?

Jump to this post

I had a good nights sleep last night but I couldn't eat dinner- was nauseous. Blood pressure has gone down it went to 113/70!!! That is so not me. I took some electrolytes this morning and I felt better. Too much sweating you know 😳. Urine color and concentration has also gotten better. Still tired. Can't eat a lot. But I hope I am getting better !!

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