I just got back from the rheumatologist yesterday. It was, I think, my 3rd visit since diagnosis of Lupus. She brought up placquenil the last visit. Then yesterday, again…said it was lupus insurance. Also stated I had lupus that can yield the worst outcome…as I have a positive Anti DNA. I DO NOT HAVE THE BUTTERLY RASH. I’ve had REYNAUDS FOR 40 years. The last 5 years I’ve had sore feet and ankles…thinking it was overuse in sports. I’ve had fatigue and last year was my worst year (before knowing I had lupus) I was sick almost the whole year…illnesses, fevers, etc.
Anyway…she also mentioned that if something happens to me before I start placquenil, then it’s too late.
Do any of you have any thoughts and experience? I don’t know what to do. I feel like I need to investigate more…maybe also get a 2nd or 3rd opinion. Another doc I casually met at the lupus walk said basically it’s a no brainer…he puts all his patients on it. I know many docs like to throw medicines at their patients…but I’m confused as to is this the right thing…because it’s a different circumstance or what? Thanks for any help. I usually am a pretty calm person…but I also now feel like I’m playing a sort of Russian roulette… Hoping I don’t get really sick and then it’s too late. Didn’t sleep well last night thinking about it.
Plaquenil is an extremely common drug to try first. Everyone else can correct me if I’m wrong but I think the majority of us have started out on plaquenil. I’m a little confused though… “If something happens before plaquenil” …what does that mean?
Plaquenil can help slow the progression of the disease…there is no “insurance” though. That’s why they call lupus “the great imitator” or it’s referred to as “the many faces of lupus”… It affects everyone differently. No two people are exactly alike. That’s what makes it so difficul to diagnose and treat. I would start the plaquenil but that’s just me.
Jend719 said:
Plaquenil is an extremely common drug to try first. Everyone else can correct me if I'm wrong but I think the majority of us have started out on plaquenil. I'm a little confused though... "If something happens before plaquenil" ...what does that mean?
Plaquenil can help slow the progression of the disease...there is no "insurance" though. That's why they call lupus "the great imitator" or it's referred to as "the many faces of lupus"... It affects everyone differently. No two people are exactly alike. That's what makes it so difficul to diagnose and treat. I would start the plaquenil but that's just me.
Whoops…not sure what happened to my reply. But it sounded like, to me…that the doc was saying, “don’t wait till something happens to me before I take the placquenil” as by then it’s too late. It’s to be taken beforehand to hopefully calm things down or possibly prevent things from getting worse?
Has the majority of people who have been on it done just fine on it?
I guess I’m a little scared or nervous…either way I go.
So as I understand it, the earlier you start on medication with Lupus or auto immune systems the better, because your immune system is running rapid and attacking your body (ie could attack organs). Plaquenil has the least side effects and affects most people. My Rheumatologist explained Lupus and meds to me like this.... There's NSAIDs (Advil) for pain and inflammation, bridgers (predisone/cortical steroids) to calm things down until the stabilizers (Plaquenil) take over and keep the immune system in check and preventing it from becoming over active. Plaquenil takes about 4-6 weeks to take effect, which is also why most people are put on Predisone for a few weeks while starting Plaquenil.
So I think what your doctor was saying was he wants to get your immune system in-check before one of your organs gets affected. If an organ gets affected you might not know it, like kindneys and liver, which is why it feels like your giving blood every few weeks/months from so many blood tests. If that happens not only do you have organ complications but you also have to worry about getting your immune system in-check from doing more damage. This could mean putting you on stronger medication which carry worse side-effects. But most of these drugs take time to start working.
I have a mild case of Lupus and I started Predisone/Plaquenil the beginning of March. I am still dealing with fatigue but at least I feel like a person again and I haven't been sick in over a month!! I hope this helps, ultimately it's your decision on whether to take the meds or not. Maybe get a second opinion and do more research (but I'm guessing it's going to be the same answer). Good luck!!! (sorry about grammatical errors and spelling errors).
Plaquenil is what is called a DMARD a disease modifying drug that changes the outcome of this chronic incurable disease. Lupus can present in a variety of ways from very mild to life threatening and a single person can experience mild to critically ill as well- it is not a static illness And while you are stumbling along with some mild aches and pains this illness uncontrolled is doing damage to your internal organs and body systems When damage is done it is permanent no taking an aspirin and it all just magically goes away. Jeannine says it well. -you yourself state you have been sick for a year Physicians do not have any magic wands-medications are their tool in which they can combat illnesses. Of course we all have the right to refuse treatment but you should be well read on this illness and its complications and make that decision based on knowledge. Lots and lots of info on the internet on lupus - the national sites and NIH have good info and some of your hospitals like Johns Hopkins and Hospital for Special Surgery also contain very informative information on their websites. Many of our members also will have good suggestions on life style changes that may have worked for them
BTW the butterfly rash has absolutely nothing to do with the severity of this illness- a large percentage of us do not have this rash and some of us have severe and or critical complications without the rash Just mentioning because you seem to think this rash has some significance
Thanks all for this information. Ponies, the only reason I mentioned the butterfly rash is because my doc had mentioned it a couple I times. I seem to puzzle her because she says I don’t exhibit all the classic signs, yet I have the gene for it and the tests that I’ve had indicate it. You all seem to have more knowledge than me right now…although I have combed over a lot of sites and info. My doc mentioned Dr, Petei at Johns Hopkins…and how at every talk starts out with the benefits of plaquenil. My doc also will respond to some of “my” issues and sort or debunk them…and say it’s hard to know if some of these symptoms are just from aging or unique to me…like it’s not the lupus. Yet these are all of a sudden now happening to me? Like I wake up one morning and the inside of my eyelid is swollen…or I feel a nervy burning, numb feeling in a spot on my back or the inside of an ankle.
I assume I’ve had lupus symptoms for years…thinking back. Just he way I felt in sun…fatigue, etc. but nothing I guess out of the ordinary, as no other doc ever picked up on it…even when I’d tell them about the sensitivities to foods over the last few years. If I eat crap or something with sodium, I feel it!