Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

DSRM
First of all I hope you are all doing well! I am just a bit confused and unsure if what I am going through is normal. I was doing really well for a while. At least two months of feeling well. So much so that being able to move around more than usual, cooking more at home other than ordering out I managed to to lose 21 lbs! I was very conscious of how much i did because I didn't want to over do it and rebound back to where I was. However, two weeks ago towards the end of my work week I started to feel very tired, drained and weak. I would come home lay down and relax but I still felt the same way the next day. Then the joint pain began. The pain would go from my shoulders, knees, hands, wrist, elbows, pretty much bounce around everywhere. Then I started throwing up with pretty bad tummy ache. My hair began falling out and my face has broke out. The reason I feel nuts is because I can go from feeling horrible to fantastic and back to horrible all within a few hours. My Dr always says that my blood work is "within normal limits". If my blood work is fine is what I'm feeling just in my head? My reg Dr. tells me that I need to stop thinking about how i feel and It will just work itself out. Yeah right? Right now I am on Plaquenil twice a day only. I have been off Prednisone for at least a year now and I don't want to go back on! It made me feel very sick. I have an appt with my rheumy next week and I'm afraid of what he will think of my complaints. Last time I told him about my hip pain he did an x-ray and said it looked fine so just take ibuprofen when it hurts, well i still hurts. I am sick of feeling dismissed. I normally just tough it out but I just don't know how much longer I can be tough! Sorry for the rant but thanks for listening!
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So sorry for your pain and the problems with your docs.
Lupus affects everyone so different and we all feel the symptoms so differently. If you aren't happy with how your rheumy is treating you, then why not seek a second opinion--it's your right to do that.
I recently had a bad flare and had to go back on prednisone after being off of it for about 3 months. I was REALLY worried about not being able to get back off, but the taper pack the doc prescribed worked, and I am better. Only had to be back on it for 5 days I think.
I have good days and bad days, but no day with no symptoms or when I feel like my old self. If you have days where you feel really good, that is a wonderful blessing, but I know the bad days can be really tough.
I'd be sure to tell your rheumy all your symptoms and let him know how you feel. If you feel he is dismissing you, let him know that too.
WIshing you the best of luck at your appt!
Warmest regards and hopes that your day is good!
Merrie
You sound normal to me, regarding lupus. Try new rheumies, you will be glad you did. I drove 5 hours to find my last one, but she specialized in RESEARCH of methotrexate, so she REALLY understands auto immune issues and she was wonderful, until she retired.
Now that I am seeing a new rheumy, I go into these appointments with a firm opinion. They work for ME. I am paying the bill. They can't treat me like a nobody. I don't allow it. I speak with respect for myself and talk nicely but firmly to them. If they don't like it, I go elsewhere, again. I have just been pushed around long enough and that's that. I am like the main character from Fried Green Tomatoes movie with my car at the grocery store. lol!