So my new rheumy plans to start me on this in August, do u all have any bad side affects from it or is there some things i should watch out for or be prepared for?
Jashetta, when I was prescribed plaquenil, I didn't have the prescription filled. Many years later I am still thinking about the flares that I could have avoided if I had only been like others who took the drug . I suffered from Lupoid hepatitis, seizures, heart problems and kidney failure. The kidney failure progression may have slowed down had i taken it. Please give it a try. Not one person I know whose taken it said anything about side effects.
My rheumatologist put me on Plaquenil almost 20 years ago (along with quinacrine) when first diagnosed. Since then, lupus has remained under control - no organ involvement, no significant changes in k lab results / and no bad side effects that I can tell. I am overdue for eye check. For other conditions, over the years I have tried meds that did give me bad side effects and had to stop.
@A MyLupusTeam Member I’ve tried all the medications you’ve listed a Plaquenil is NOTHING compared to those!! With Plaquenil i don’t even feel like I’m taking anything. I was fortunate that I never even had stomach issues when I started it. Some do, that’s why a good Dr will suggest starting with a low dose and ramping up over a few weeks time so your stomach adjusts
The drug works differently than most. It does help decrease the frequency of flares and helps manage certain symptoms making life a little more comfortable.
Problem is, people will think it’s not working because you’ll never notice the flares that were prevented but will notice the flares you still get. So it’s hard to gauge how much good it’s doing
Most importantly tho, Plaquenil PROTECTS your internal organs and can slow the progression of Lupus. If for no other reason this is a good reason to take it!
I have a friend with Lupus. Hers progressed to the point that Plaquenil wasn’t an option and so she had to do chemotherapy. She took the maximum amount of methotrexate a few years ago and now is on an even stronger chemotherapy drug. The type of chemo that makes all your hair fall out and has you barfing and sick all the time 😔
She is currently in the hospital very ill since her lupus flare attacked her lungs causing pneumonia and pleurisy that they can’t get under control. She’s been there for a week with no sign of getting out soon.
A few years ago she nearly died when her kidneys started failing during a flare. She is only in her late 30s
I don’t say this to scare you but to give you perspective. Being at a stage where Plaquenil could help stop the progression of the disease is a blessing compared to being at the stage you need highly toxic chemotherapy drugs to survive
You don’t have to make a decision overnight but given the symptoms you’ve had already I would hope you’d give it a try 💗
I've been on it for 30 years! I do fine but you do need to see a ophthalmologist every six months for a specialized eye exam to make sure you don't have plaquenil toxicity.