I wanted to respond to your post to maybe help with your emotions of freaking out and being overwhelmed.
Yes, having swollen fingers is very normal. The eyes it depends on the patient. You sound as if you've been in really bad flare and so far 20mgs of pred hasn't kicked it totally.
That happens sometimes and we can need higher doses of pred. Sometimes it requires not only pred but plaquenil and an immuno suppressant drug to get our disease under control.
Now that being said I'm not a Dr, but I've had lupus a long time now. I going to guess that your Rhuemy is thinking that your inflammation markers haven't come down yet, hence the need for more pred.
I know how much of a bummer it is to take even higher doses of the stuff. I once was on 100mgs for two weeks before they started a taper. It's quite possible some extra pred will make the difference.
Now IF your inflammation markers have started going down, it's possible that the pred is causing the swelling. Pred can cause water retention. I take lasix daily to help counter the fluid retention I have.
My eyes are swollen too, mine are caused from the MOON FACE that I now have from taking pred everyday for 13 years at an average dose of 25mgs daily.
Are you keeping a journal listing ANY and ALL symptoms you are having. If not you should start one so that when you see your Rheumy you can show it to him.
As for getting more info on lupus there are several good books for sale about it. Most of us own Dr. Wallace's books on lupus. You can also contact The Lupus Foundation in Bethesda MD. They will send out info to you and they can also tell you if there is a lupus support group near you.
Finally, I'd be more than happy to answer any questions you have. My email is listed in my profile and I'll respond right away to your email. If you decide to email and want to exchange phone numbers, I'd be more than happy to talk with you at anytime.
Hang in there, it just takes time to get flares settled down, especially ones that have been around a long time. You'll be in my prayers and keep us updated on how you are.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.