Hi, I'm new to the message board so I'm not sure of the proper
navigations yet so please bear with me... I've been reading a lot of
the posts just to learn a little more personal ways people deal with
this horrid disease... my sister was diaganosed with RA in may of 2006
and has been on several of these meds mentioned, Humira, Methatrexate
now Remicade , all along with massive amounts of prednisone,75mgs
and has had no relief. So frustrating and painful for her and our
family. She's in the hospital now with Pluerisy (sp) from "rheumatoid
lung", can barely breathe and is most of the time in a wheel chair.
The "attacks" are so frequent we fear for her life. The sudden onset
from one year ago was so unbelieveable. She is 66 yrs old and was
very active and health conscious. Now she is totally incapacitated, on
tons of meds,has constant infections, and is on oxygen 24/7. Nothing
seems to help. We are desperate for relief for her. Sorry so long a
post but we are so afraid for her. Any advise is greatly appreciated.
Oh my goodness...I am so sorry that your sister is suffering so. And it is just as hard on the family dealing with this disease. I wish I could give you some suggestions that could help. There are several great people with tons of knowledge here, so you are in good hands.
I will pray for your family, tell sis to be strong and to let God take care of her.
Thank you for your prayers Lisa, we know God is in control and pray for Him to help her and I know he has. Believe it or not things could be much worse for her. Our prayer is for all her numerous Drs. to all get on the same page and find a protocol that would help her. We had such hopes for Remicade....I don't have anything practical to advise, I just wanted to say "best wishes". I
wish I had more to offer---her situation sounds so horrible!
Normally I would say if all else has failed to try antibiotic protocol therapy,
but she sounds like she would need heavy duty intervention and a very
experienced AP doctor which there's not a lot of. If you ever decide to look
for one, though, try the message board at www.roadback.org. I hope she
gets some relief soon.
this may be so totally out of left field but here I go. It would be unlikely that something inflammatory would not respond to 75mg of pred, maybe not in the long term but she should have seen something in the short term. Are they 100% positive that it is RA they are dealing with. It wouldn't be the first time a diesease was labeled and no one thought to look past that label to see what didn't fit. Are they throughly investigating everything or still working within the current diagnosis.
my prayers are with your sister Genesis. I hope she sees improvement soon
Actually Buckeye, we have considered other diseases, Lupus being one of them...it seems her whole body, organs, and meds all work to "attack" instead of help. She is in Charlotte, N.C. in a big hospital with lots of specialists treating her... RA, Cardiologist,Pulmonologist,PCP, and I don't know who else. They've tested for various things but it all seems to point back to RA. It seems she has every symtom known to RA and every side effect known to the meds! They try to bring her prednisone levels down occasionaly because she is sssooooo swollen it is awful, but she gets worse on breathing and pain.. Her sed (?) rates stay extremely high so there's no question she has RA but I just believe something else serious is going on.She's struggling even harder to breathe today than yesterday. Could this be a side effect of the Remicade? She's had three treatments, one every two weeks. Sorry so long but thanks so much for all the prayers
.