OK, so my rheumy talked me into taking 10 mg Pred a day, which I did for about a week, then tapered down to 5 mg, then down
to 5 mg every other day. (I'm very sensitive to meds, and do not like the idea of steroids, so she couldn't talk me into a higher dosage.)
So on the 10 mg daily, I felt NORMAL. Oh my gosh, I felt normal. So normal, that I forgot I had Sjogren's. Seriously. It was like a miracle.
Then I tapered down to 5 mg daily, and started having moments of, "Oh crap, I have an autoimmune disease, don't I..." and now at 5 mg
every other day, I have lots of "crash and burns," esp. after exercise. STILL, on my current low dosage, I ran THREE MILES with hubby
yesterday. I felt as if I'd completed a marathon, I was so thrilled with my progress. I'm convinced it's the Prednisone making this possible.
Saw an opthalmologist last week for the dry eyes, and I have chronic blepharitis (inflamm. of eyelids). *sigh* So am on tetracycline for
3 months along with topical antibiotics. He is NOT a fan of steroids at ALL, and encouraged me to wean off them completely and try
Plaquenil. So...what exactly does Plaquenil do? My main SJS complaint is incredible SORENESS. Oh my gosh, the pain. Joints, muscles,
bones, EVERYTHING hurts. Does Plaquenil address this? Does it make you feel alive and "normal" like pred does?
Thanks
I'm glad that Pred is working so well for you.
Unfortunately it has many side-effects that may occur sooner or later.
Weightgain, increased appetite, bone thinning (osteoporosis or so), moodchanges, insomnia, .... and so on.
I have been on Pred for more than 4 months now, not many side-effects at all but it is not giving m any relief.
It could be that they are keeping you on Pred (Rheumy that is) to try and control this flare, once it is 'stable' they may want to try and wean you off it completely.
Plaquenil is known to take a couple of months to start working.
It usually takes around 3-6 months to kick in.
But some people notice relief in a few weeks time already.
It can help reduce fatigue, joint pain, rashes, inflammation, dryness and many things.
Also protects your internal organs and makes your life expectation better by 50% (Correct me if I am wrong)
So after all, Prednisone never is good to be on for long term.
Sometimes there's no choice.
But there are still options to relief pain such as painkillers.
And there is Plaquenil which is a wonder drug for some people.
Even if it doesn't really help to ease symptoms it's highly suggested to take it.
Just to protect your organs from fututre damage and so on.
Hugs and love. :-*
Plaquenil helped me tremendously with my pain and fatigue. Unless I'm having a flare, plaquenil allows me to function like a nearly normal human being.
Like Shani said, it takes time to kick in--a few months for most people. It's an anti-malarial, but people with autoimmune diseases take a much lower dose than those who are traveling or living where malaria is a threat. As a result, we don't usually experience the side effects that can affect people on a higher dose, though certainly some people do experience some side effects. I haven't had any since I started taking my doses separately and with food (one at lunch and one with dinner); before that, it was just very minor tummy issues.
Hi becerrad,
When I discussed possible treatments for Sjogren's, both my rheumotologist and neurologist were very much apposed to prednisone because it has some "30 or more possible negative side effects"...in the words of my neuro. In their opinion, the risk/benefit ratio did not warrant my taking it. And it is generally unsafe to take for long-term.
They prescribed plaquenil because it has few side effects and has proven effective for many of the Sjogren's symptoms you have described. While it's true that it takes 3 to 6 months before you receive its full benefit, it is safe to take indefinitely if it does improve your symptoms.
I'm no medical expert. I just started the meds 5 days ago. I have chosen to take the two tablets in the morning with food, and so far have no ill side effects.
Good luck with your decision. ;)
Thank you, everyone...I think I'm going to try the Plaquenil. I see Rheumy next week and will ask for script.
I have noticed mood swings I don't like much at all with pred...esp. when the mood swings are LOW. :-X