I have struggled to live without them and been on them and done amazing , and been on them and sick as a DOG. One of the things I would suggest is to try them but remember they are long term drugs. My RA told me it takes 9-12 months for Plaquenil to become fully effective. Methotrexate takes less time to become effective but both can cause sever nausea. However, both did what they needed to do.They don't always work, but at least in my experience when they work, they REALLY work. If you haven't already talked to your Dr. about it, you might ask him about a Prednisone "shot" High dose, short duration. 3 days at each dose typically and then normally about a month at a low dose. That has worked for me a number of times. The meds are tough and you may not want to hear this but it doesn't end there - even if they work. It is not at all uncommon to have residual symptoms that have to be treated individually and usually after you are already in pain enough to notice it. I would say trust your Dr. - if you don't try another RA. A good RA will take your concerns into account and advise you based on them and your symptoms.

Thank you so much middlegirl! That's good to hear! I have heard some people are actually sick less while on them, since they overall are healthier.. I am of course nervous - what if they don't work, and I'm taking all the risk without the benefit.. however plaquenil and IVIG have been miracle drugs.. I realized with plaquneil one day that , wait I feel so much better, and I can bend my joints again... though I still am far from my pre sick self, especially during flares.. THe steriod idea is something good I should consider! I know last time I had a flare they wanted me to do steriods (just a dosepak).. but ugh those of course have side effects too..

What is the IVIG for exactly. My PCP mentioned it to me. I think he thought it might help for the peripheral neuropathy. What does it do to your brain? Do you feel less foggy or more?

AnnNY : yes, it's for neuropathy techincally.. I have a diagnosis of CIDP.. it hit me pretty hard, but my heart, GI , skin everything was affected.. I have apparently (according to the biopsies), very severe small fiber neuropathy as well.. then I had motor and sensory affecting everything up to my eyes, swallowing and entire body.. They all say it's from an underlying autoiummune issue (likely lupus).

My brain feels much better after IVIG.. i get what I call "buzzy brain".. where i feel disoriented, my ears feel funny/buzzy, i feel uncoordinated, and my hands, swallowing etc go funky.. this happened daily without IVIG.. now only when it wears off.. Iniitally you feel like you have the flu for a few days (I have gotten aseptic meningitis badly a few times).. it literally saved my life, as I was hospitalized since I couldnt' breathe until they tried that on me.. thus far I can't go further than 3 weeks without it, for the past 5 years

Thanks for the info. I have Medicaid, so I think I'd have to go through every other thing before that. My rheumy wanted to put me on Lyrica, but I gained so much weight on gabapentin that I didn't want to do that. Then she was going to put me on methotrexate, but that caused me so much fatigue. Prednisone helps with everything, but not good for my bones, that are already not good. And the only thing that seems to help CNS lupus and brain fog is cyclosporin which has scary side effects.
Oh, well, going to see the rheumy tomorrow. Will see what she has in mind.

I also take Lyrica, i absolutely can't sleep well without it.. otherwise I fall asleep no problem, but wake up every few minutes havig to shake my limbs as they feel asleep.. i have issues absorbing food, so if there has been any wt gain caused by it, i haven't noticed. good luck with your appointment!

Once we got the dosage right, I did fine. I took one pill a day for a week, then got bloodwork to see how my body handled it. Since the bloodwork was good my doc put me on 2 pills per day and YIKES the nausea was awful. Now I take one pill in the morning and half of one (Imuran) in the evening. My C3 looks better and I feel better as well.

Good luck, hope it works out for you!

thanks stefani! Glad you are feeling so much better! When it felt like glass in my wrists this morning and I was broken out in a rash, it was looking even better to me... we are trying to work a few things out (get away from working around lots of contagious people).. and I think I may try it.. though It makes me very very nervous with the side effects and infection/cancer risks

I don't think I will ever be on them unless I get organ involvement. Ive had this for over 7 years now and I haven't had any yet and hoping to never need them! Im not even on Plaquenil as I don't have too much in the way of joint pain just fatigue. As far as infection, thats a real risk with them. I was in the hospital for 4 days with a campylobacter infection that was starting to look like mild sepsis, without being on those drugs. Its just with autoimmune disease our immune systems are already a bit compromised. Im thankful I wasn't on them when I got the food poisoning. So to me yes it sounds risky.