Lupus Support Group

Hey everyone, I recently went to my Rheummy and he basically keeps telling me the same thing. He says the blood work looks good and that I am in remission. I am so fed up because it seems like he's not listening to me. I have had bad fatigue, and in pain most of the time. I just don't understand how I can be in remission and still be in so much pain. It's bad enough that I have to drive 2 hours to my Rheummy, but he is making me go back every three months just so I can hear the same thing. My regular physician actually was a little concerned because I was getting horrible side effects from the plaquenil and my Rheummy actually told me to stay on it. He has completely dismissed all of my concerns and my symptoms. I dread going back to see him because I know it's gonna be the same thing. I was just wondering if this has ever happened to anyone else or if anyone has any suggestions??? Thanks to everyone who reads this..

Yes, this has happened to me too. I'm in the process of changing doctors. Ironic thing is, that when I was diagnosed 5 years ago he said I may never develop all the symptoms and just had mild lupus. I was having the pain at the time. Now all these years later I am in a bad flare.

I have joint pain, fatigue, weakness, fevers every day and gastritis and esophagitits from the lupus attacking my GI track. But, when I went to him for this flare he said again, mild lupus. But now, with the GI involvement he is getting all aggressive and pushing tons of drugs on me and even trying to scare me that if I don't take the meds the lupus will get too aggressive and he will have to put me on really high dose steroids.

So, they can be so weird and lacking in empathy. Maybe if he would of originally listened to me and how sick this flare would of never gotten so bad! I am changing my rheumy, I hope it will help.

I hope you can find a rheumy that will listen!

Amy

hi vallyndel, yes it has also happened to me. my rheumy told me that my lupus was either gone or in remission, then a week later i received a copy of the lab report for the blood that she drew and all the values indicated an active flare. i have gone back to my original rheumy, who is about 2 hours away from me also, as the other one that i was seeing just wasn't consistent in her diagnosis or treatment plan. is getting another rheumy that will listen to you an option? maybe you have an overlapping condition - fibro or something that is causing the problem if your labs aren't showing an active flare. good luck! wendy

Hi Vallyndel. I agree with Wendy of overlapping autoimmune diseases with lupus. Perhaps you have fibromyalgia that causes pain and does not show up in blood tests. I think a good rheumatologist would provide treatment from symptoms and not from blood tests alone. Perhaps a second opinion suggested by Amy is not a bad idea.

Hi Amy. I remember my immunologists saying that when the lupus attacks the GIT, then that's a significant complication and that's when the rheumatologist would aggressively treat active lupus (otherwise you may not be able to eat, digest etc..). If steroids & DMARDS fail, your doctors would step up treatment to immunosuppressants e.g Cellcept, Prograf which have significant side-effects.

I hope you both will recover soon.

best wishes

Marie

Post edited by: Looopie, at: 11/11/2009 04:58 PM

I agree with the others....time for a second opinion. My rheumy defines remission as no drugs and no symptoms. Seems to me you don't meet that definition so you need to continue on your journey to figure out what is wrong.

Thank you all for the suggestions. I will have to look into finding another Rheummy. As far as I know He is the only one in my area. The good thing is that I have a great physician who listens to me and is trying to figure this out and help me as much as she can. I just hope I can find out soon because my pain seems to be getting worse now that winter is just around the corner. Thank you all again.

I googled lupus remission and this is what I found

Prolonged remission, that is, no evidence of disease activity or treatment for at least five consecutive years, is rare in patients with lupus, according to research presented at the American College of Rheumatology Annual Scientific Meeting in Orlando, Florida.

I'm not sure if this fits here but there have been several references to remission.

Wow, 5 years with no lupus? That seems unheard of, but something to hope for. I went almost 2 years with very mild symptoms but now I'm in the worst flare of my life. Maybe that new lupus med coming out the end of next year will be our miracle drug, we can always hope.

Amy

I agree that auto-immune disorders overlap so its a definitely possibility but I also have to say that I don't have fibro and my labwork doesn't show that I have lupus right now but I am still in a major flare up and have been for a while. Its not just the labs that show you are in a flare with lupus. And the meds you are on can also influence your labs so that is something to keep in mind too.