Lupus Support Group

Well I was in the hospital for 8 days and I guess im glad to be out but its a little scary because when I was in the hospital at least I new my lupus was being controlled. I went at first with complaints of chest pain and touble breathing but i ended up being admitted because of low blood platelete counts. So for 8 days they gave me a couple platelete transfusions, somthing called IVIG transfusion, controlled my overall pain, and raised my prednisone to 80ml. Now I home and it sounds crazy but I feel like I would rather be in the hospital. I feel sooo bloated from the prednisone..dont even look like the same person. I feel sick like I have the flu and Im withdrawing from the pain meds they were giving me through an iv. I just feel like crying all day(i guess moody from the prednisone) but anyway i cound go on and on about all of the problems im having now...including, cant eat cause I have sores all over my toungue. I so wish I was back in the hospital where the nurse was there to help with wierd symptoms, and I ...i i dont know im ust tired of this. I keep saying "THIS TOO SHALL PASS" but when is enough enough?????

Hi there. I'm so sorry to hear that you have been in hospital; I understand the chest pain and palpitations very well. Have your doctors given you oral prednisone to taper down the iv dose? High dose prednisone causes mood changes for sure, but it would fix the mouth sores. Some of my lupie friends were discharged with oral prednisone mouthwashes for the mouth sores - perhaps you could ask for that. Doctors discharge lupies with oral narcotic pain meds to avoid withdrawal. Perhaps you could contact your rheumatologist/local doctor on Monday to arrange these meds if the hospital has forgotten.

Just hang in there; when your body has adjusted to the oral tablets, then all these changes will pass.

Take care

Marie

I too and sorry to hear of all you have gone through at the hospital and the pain you still suffer from at home. Marie has some good ideas for getting relief. I hope you are able to contact your doctor and get some relief. The prednisone bloating is awful, I'm dealing with that right now too.

Take Care,

Amy

imsweetestkitty, so sorry to hear that you have been in the hospital and you still aren't feeling better. hope things change for you soon! hugs! wendy

imsweetestkitty,

Try and rest. Its a big thing to go in the hospital. You body is going through alot. Make sure you take care!! Thinking of you!! Gen

I am so sorry to hear of your visit to the hospital. That is never fun. It will take a while to feel "normal" again. I hope you feel better soon.

Alison

thanks for everyones support. I know it takes time to feel better after leaving the hospital. I feel so bad for my family becuase I keep having these emotional outburst crying out "I dont want to have lupus any more" or "I wish i would just die" Its not fair to them but its just how I feel. I feel like I died back in 2007 when this all started because I know I should be lucky to be alive but really this lupus is keeping me from really living.

thanks Gen, I read that you are going through alot too. I hope your pain goes away soon. I wish they would find better ways to handle this horrible disease.

hi Loopie, the doctors have me on oral prednisone 80ml every morning. They stopped my plaquenel and imuran because of my low blood count. As far as pain meds. my doc gave me a perscription for percocets but Im trying not to really take them because I hate the feeling I get After taking them for about a week. I dont like feeling like I need them and the way my body feels when i "NEED" them and I dont get them In time. The withdraw feeling. So Im trying ti get through the withdraw now so that when I go into work tomorrow it might be out of my system and one less thing making me uncomfortable my first day back at work.

what do you do about the bloating?