Lupus Support Group

Thankyou for all the support I recieved after I wrote last week, It was the first in a long time my spirits has been lifted. My hospital stays were for didderent reasons the first one was an illness, the othertwo were for the fact that the lupus has attacked my gastrointestinal track and I am loosing weight, malnutrition, the last one they said was a TIA. I saw my regular PCP today she doing what she can to control the gastrointestinal system, She made sure I have not gotten the swine flu from my son, And the meds she put me on to prevent it worked plus I had an exray of my head becaue I fell on friday, she didn't like the looks of my bruise on my face. And I have blood work once a week. She thinks Im sounding depressed. I just want to thank everyone for the support I recieved here.

Angle.

You might want to treat the depression? It's my feeling that anyone with a chronic disease has the right to neing depressed. And it's so treatable.

Hi Angle,

You said you were in the hospital because of the lupus attacking your gastrointestinal tract...What did it do to you specifically if you don't mind me asking. I'm having that problem myself right now. I was in the hospital for a week because of it too last Feb. but no one figured it out then. It will be a yr. in Dec. that I've been suffering from this. I have serosistis from the lupus in my GI tract. I lost 20lbs originally from it...Gained back 8 since I've been on Methotrexate but still getting sharp pain. How did they get rid of your problem?

Thanks!

Kelly

Hi Kelly,

They have not figured out what to do thats whu=y I am in the hospital so much. I have lost 25 lbs. My RA says it can,t attack my gastrointestinal system so my PCP is trying to help me. I feel I am dying of a slow death, the pain in the last 2 days has been unreal My husband wants to take me to ER., I won't let him because they will either admitt me or give me something for the pain send me home and tell me to follow up with my RA. I have non stop Diarreha, I have a lot of inflamation and a lot of bleeding.I have been so upset the last few nights I have been crying my self to sleep. I always cry after my appointments with my RA. she is no help.The pain s still real bad tomight and I need to put my kids to bed so I can go. I am trying to do research to help my self. I told my PCP the other day Iwas dying of a slow death and she said she was trying to save me. I need IV fluids weekly, and My blood is drawn weekly. on a split notice she sends me to the ER. Its so hard on my kids. If I find anything out I will let you know, maybe you can do the same. Thanks Teresa

You have got to get a new rheumy. The one you are seeing isn't right for you. I understand the not wanting to go to the hospital thing, sometimes I feel the same way. But the doctor should be making you feel better and that is not the case. Have they tested you for APS (Antiphospholipid Antibody Syndrome)? And hi from Salem

Alison

Post edited by: redhairali, at: 10/07/2009 08:10 PM

I so empathize with your frustration and your fear. I too have gastrointestinal distress during a flare but it goes away when the flare subsides. I would look for a new rheumatologist too.

Teresa,

I'm sorry! I understand except my dr. is great. But I have been through the ringer with quacks myself too, believe me!

I don't know if we have the same problem because our symptoms are very different. But your dr. is full of crap saying it can't attack your GI tract. Lupus can attack any organ system. What is happening with me is that I have inflammation around the intestines and colon which causes sharp pains and when the pain is at its worst, my stomach gets hard like a rock. I can never put any pressure on it, not even a seatbelt. I keep something in between so that it doesn't touch it. Eating makes it worse, but I don't have any of the bowel symptoms you describe. The weight loss of 20lbs happened because I was in so much pain before that I couldn't eat. I ended up in the hospital because the MRI I had done showed that my mesentary colon was inflammed and I went to my PCP and he felt that my stomach was hard and I just couldn't take the pain. But even in the hospital they didn't even think about lupus because at the same time I had a kidney stone so immediately everything went to that because that was something they could figure out. Afterwards though, my rheummy and PCP both said serositis. My prednisone dosage was increased and kept getting increased until I was at 40mg and then my rheummy felt it wasn't working so he added methotrexate and lowered the pred. down slowly until now I'm on 10mg. So the metho. helped me eat again, but the pain was still there. So he added sulfazine (this is used for Chrons disease and Ulcerative colitis, but also with lupus). That has done nothing for me. We increased the metho. again which has gotten the pain to be less constant but the severity when it comes is still the same. So really it is just playing with meds and doses to see what works. And I take percocet everyday to get through the day. In my opinion, you should find a new rheummy who listens to you and doesn't dismiss this. You should have something for the pain, and your rheummy should be trying different things like I mentioned to try and get rid of this. Does your rheummy have you on any meds?