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Life With Lupus

Looking for advice on plaquenil


#21

I have been on plaqenil for 3 years. Good for symptoms, but I stopped recently due to the changes in my eye sight. My vision isn’t the same anymore. I currently just take natural supplements. Good luck!


#22

Pamela Sattiewhite

Just curious.

Before you were put on plaquenil what were your symptoms and are the supplements helping those symptoms??

Cindy


#23

antacids reduce the effectiveness of plaquenil…they should not be taken within a few hours before or after taking the plaquenil…and i love my plaquenil…no side effects for me…and it has taken away all the arthritis type pain in my hands…


#24

Never knew this Thank you

bebeinmd said:

antacids reduce the effectiveness of plaquenil....they should not be taken within a few hours before or after taking the plaquenil...and i love my plaquenil...no side effects for me...and it has taken away all the arthritis type pain in my hands..

#25


Pamela, did your eye doctor do the tests on your eyes to see if it was plaquenil related? My eyes have changed over the last few years, but it's do to dry eyes. Doctors think I have Sjorgrens which is diagnosed with lupus frequently. This causes dry eyes, mouth, skin, etc.


Pamela Sattiewhite said:

I have been on plaqenil for 3 years. Good for symptoms, but I stopped recently due to the changes in my eye sight. My vision isn't the same anymore. I currently just take natural supplements. Good luck!

#26

I think my eye issues r from prednisone. I still see eye doc every six months. I love plaguenil . Took three months to really help. First three weeks nausiated, but worth it. I take 200 mg twice a day


#27

I was diagnosed with SLE Lupus in 1993 and have been on Plaquenil 200 mg daily and Naprosyn daily since then, due to the start of my lupus in the beginning was in and out of hospital with severe flares, blood clot in leg and high doses of prednisone. Plaquenil worked good for me all these years, the high doses of prednisone caused cataracts in both eyes which then I had intro-ocular lens inplants and but several years past being in remission once in a while a small flare but nothing that couldn't be handled. 1 1/2 years ago Discoid lupus became my enemy and struggling with that now, bright red rash over my shoulders, chest and my palms and hands bright purplish red, it appears the plaquenil is not controlling the skin so we are attempting to control it with prednisone but may have to put me on something much more stronger, good news is their is no kidney, liver or heart involvement but for me plaquenil worked for many years until the discoid lupus decided to show it's face. 31 years old and at that time was put on plaqu


#28

Well some good in everything, simbaderry!
One thing I noticed just this weekend, the Plaquenil is helping with my muscle pain, it has taken 7 months to help with that, but since my muscles have been knotted 38 years, it may take longer. I just noticed it after waking up from a nap, my muscles in my shoulders and legs were not constricted, it has been bad for so long, that I was in shock for a second, thinking what is wrong? My chiropractor noticed it today right away, he does trigger point therapy, but couldn’t get any results until tonight.


#29

I have SLE Lupus and had been on Plaquenil. It did help mainly just with skin problems for me. I had bad headaches with the medication so my Rheumatologist discontinued it for now. You have to get your eyes checked also while being on this medication a little more frequently, I did have some eye changes but my Opthamalogist was unsure if it was the medication or the Lupus causing the changes. With this medication unfortunately the Doctor says it takes a little while to work but I personally was tired of some of the side effects. I have read however other Lupus patients having remarkable effects with this medication. Good luck on what you decide.


#30

glad to hear you have improvement Jon sparky we can only hope there's remission and light in the tunnel.

Jon_sparky said:

Well some good in everything, simbaderry!
One thing I noticed just this weekend, the Plaquenil is helping with my muscle pain, it has taken 7 months to help with that, but since my muscles have been knotted 38 years, it may take longer. I just noticed it after waking up from a nap, my muscles in my shoulders and legs were not constricted, it has been bad for so long, that I was in shock for a second, thinking what is wrong? My chiropractor noticed it today right away, he does trigger point therapy, but couldn't get any results until tonight.

#31

6 months for plaquenil to actual start working when I started taking it back in 1993 it took exactly 6 months, been on it ever since but we are seeing it's not working for my newest form of discoid, plaquenil is just not cutting it but I have been overly stressed the past year and my dad just passed away nov 30th so it's been rough, I now firmly believe stress is a big factor in totally sending lupus on a free for all frenzy..back on prednisone see if it helps but that's just a bandaid.

good luck

Amanda said:

I have SLE Lupus and had been on Plaquenil. It did help mainly just with skin problems for me. I had bad headaches with the medication so my Rheumatologist discontinued it for now. You have to get your eyes checked also while being on this medication a little more frequently, I did have some eye changes but my Opthamalogist was unsure if it was the medication or the Lupus causing the changes. With this medication unfortunately the Doctor says it takes a little while to work but I personally was tired of some of the side effects. I have read however other Lupus patients having remarkable effects with this medication. Good luck on what you decide.

#32

Been on plaquenil since 2004. Sometimes it works sometimes it doesn’t. Have to wear glasses now and get my eyes checked every 6 months


#33

Ive taken it for years with no problems. Helped with achey joints. No longer get rashes.


#34

I took Placquenil in the early 80’s and went into remission in a few years. I just recently realized the lupus had reactive. Blood tests were positive for a flare April, 2018. Still testing for system involvement. When taking Placquenil you need field of vision testing three or four times a year. Unless changes have been made, this medicine is rentina toxic. Please check with prescribing doctor. I hope this helps you!


#35

I have been on plaquenil since 2010 at 600mg once a day and with a combo of Meds that goes with it and it has worked well for me I usually feel like shit before I get a monthly infusion of benlysta. That’s something you might wanna ask ur dr about that’s the only drug I know that is approved for lupus. My dr placed me as his most difficult patient that he’s had but after many different tries of Meds combo we found the right recipe. Also ask your dr about Acthar hp gel that replaces the 60 mg of Prednisone that I was taking it just a shot under the skin 2x a week


#36

Plaquenil is really helpful to some people, but as many posters have mentioned, you must have your eyes checked by an eye specialist before going on the med, and then regularly afterwards. (How regularly will depend on your doctor, mine wanted a check every six months.) Who checks your eyes depends on your health care insurance/system/doctor availability, but if there’s any way you can see an ophthalmologist (MD with eye specialization) that’s the way I’d be going.

In the Rx trivia department, did you know that Plaquenil (hydroxychloroquine) is an anti-malarial? So you will be protected if you go to the deepest darkest tropics while you are on it! Bonus!


#37

Just a comment. I only take 200 gm once a day and this reaches a therapeutic dose for me. Each person is different and it’s not necessarily 400 mg that works for all. Some need more and others less. I have plaquenil to be pretty effective but remember there is a max number of yrs they generally don’t want u on it. It can destroy your color vision but my dr makes me get a special eye exam every year to authorize me to take plaquenil for another year. I have tried to get off it but invariably end up back on it. Also suggest everyone ask their doc to test their vitamin d level. Because we tend to stay out of sun it may be low and boy did I HURT when mine was low. I thought I was going to be totally disabled bec of the overwhelming pain and exhaustion. Each person reacts differently but I have had three docs tell me stories about the ‘miraculous’ difference vitamin d supplements did for ppl. They put you on a rather high dose for about two months and then run test again.