Posted 3/16/2008 1:12 PM (GMT -6)
There are many alternatives for treating lupus and each patient responds differently. Prednisone is an awful drug but it saves lives and not everybody has the horrible symtpoms. I have been on it for 2.5 years. Your doctor is not being aggressive enough in treating you and I suggest that you find another rheumy who is experienced treating lupus and get a second opinion.
As others have noted you case is NOT under control. Plaquinel is just one med and not the quickest acting or strongest. Sometimes it takes a "cocktail" of meds to get an individual case under control.
Your rapid weight gain is due to edema....water retention. It is common for lupers to have kidney involvement and a condition called proteinuria can cause very rapid and large weight gains. It happened to me twice where I gained 15+ lbs in a few days and looked like the Michelin man. This condition is usually easily controlled with an ace inhibitor but it should not be ignored as it can lead to permanent kidney damage.
Treatment of lupus is a long term affair. Taking prednisone or whatever other med for a few days or weeks is usually not sufficient to get your immune system under control. Treatment is something that is done on a long term basis and it often takes many months or even years to get things under control. Some patients go into a remission but flare later on. Others need a maintenance dose of some controlling med and often do well and lead normal lives.
My case is much more complicated than just lupus. I have mixed connective tissue disease which is lupus, scleroderma dn polymyositis. I almost died at the end of 2005 and entered a rehab hospital just 2 years ago as a quadriplegic who could not swallow. Polymyositis took 40 lbs of muscle and left me a cripple in just a few days. That was after gaining all the water weight so I actually lost about 55 lbs in the hospital. I had internal organ involvement as well. Today, I am living a fairly normal life and have returned to golf, skiing and tai chi after more than 2 years of therapy. I am still on prednisone and imuran but on low doses and my doctors do not want to take me off and risk a relapse.
Think about this as a long term, lifetime battle. Treating lupus is not like treating an infection...get some antibiotics for a few days and it goes away. You can return to a normal life but your doctor needs to find the right course of treatment. Hopefully there will be more effective, targeted meds in the near future that will help those with lupus. For now all we have are the corticosteroids and immuno suppressants that tranquilize our immune systems and can cause lots of side effects.
By the way, I am 65 and you have youth on your side. Find another doctor and get a second opinion. Not all rheumys are experienced and you are going through what many with an AI disease suffer....finding the right doctors and an effective treatment.
Hang in there.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller