Remicade - its almost 6 months now.

I had to increase my prednisone to 15 mg. a day so I can function better and do things like work my job and do things around the house without crying out in pain. I do not feel that increasing my pain meds really helps much. The unfortunate thing about prednisone is it has so many side effects and can harm the body over time i.e. increased fractures, cataracts. But, I feel I can do more and get basic housework done.

My dilemma is the work thing. If I can't get my RA under control with a biologic, how can I work. This will put a major strain on my marriage and my own self esteem. Its quite a circular problem. I have to work to get insurance, I hurt when I work, I have to take more meds to compensate, I go to work, I hurt. It really is quite frustrating.

I will be seeing my rheumy in March, and I will see what will be next. But for now, I will be posting more pics and other more fun things. This is part of my new thought process for the new year. Here is a picture of the hippy hat I am knitting on circular needles very slowly. 

Its been a while, I know, but the Remicade has been a challenge.

Well, I've been on Remicade since August 20th and my last infusion was on December 31 (under the wire for insurance!). This last time my dose has been increased and my next infusion is every 6 weeks. It hasn't been very promising. I just dropped my prednisone from 10 mg a day back to 5 mg a day (my usual dose). And my wrists and fingers would be hurting more, if I hadn't scratched my eye last night at dinner and made a corneal abrasion which required stronger pain meds (for something small, corneal abrasions hurt like bl**p!).

I was really wanting this very expensive drug to work, however, I don't think that TNF inhibitors are for me. Perhaps another biologic? I'm concerned that it isn't working because, a small voice in my mind says (what if it isn't RA?). What else could this be tho'? Swollen knuckles, wrists, elbows, neck stiffness, knees, ankles, toes, hips, jaw. All joints are effected.

On  Facebook, some have said that NO biologic has worked for them. Sometimes they peter out. But one thing is for sure, you can't go back to one you've been on, because the body makes antibodies to those. UGLY.

My Dr. Rheumy put me on Celebrex, which helps somewhat. But he wanted me to increase my prednisone before giving me stronger pain meds. Makes sense, but again, why is this very expensive biologic NOT working? Prednisone is an ugly drug. It makes you ugly inside and out. On the inside it makes your bones brittle and your adrenal gland shrink, it damages your eyes, and increases your blood sugars. On the outside it makes you bruise easily and your skin more paper-y, it gives you a "moon" face and a hump back and a fat tummy. It makes you crazy and wish you could stop your mouth from running like a dummy saying dummy things. BUT it can bring down some ugly inflammation from RA. Its a beautiful-nightmarish drug. Like many that we take just to get along. (we with RA and other autoimmune diseases).

When I scratched my eye last night, I could hardly think it was tearing up so badly. I thought because eye cells are much like cells in the mouth, they turn over pretty quickly, I would feel better in the morning. Nope. My dear hubby, took me to the Urgent Care with sunglassess and a hanky to have a looky-loo. Sure enough, I had a corneal abrasion. They had given me numbing drops (thank the good lord!) and some orange UV dye to see what had happened.Yup, a scratch at "12 o-clock" above my iris. Stupid Maybelline! Stoopid girl pride!  So, I was given a stronger med, oxycodone for pain. it has been relieveing my eye pain that's for sure. And some of my RA pain. But I'm going off it soon. And back to the good ole tramadol. I know that as I get along with this disease, I have to be able to go somewhere with choices with pain meds if things (or when) get worse.

I see my Rheumy in March. I hope that the Remicade starts working, or I get some other choices. Cause its hard pretending.