That's when I decided that whatever this was, it wasn't going away. So I went to the Dr and they did blood work, xrays, yada yada, and sent me to a Rheumatologist. My Rheumy, who is a great Dr. by the way, started me on prednisone, and plaquenil, and by December I wasn't getting any relief, he put me on Methotrexate (Mtx). This drug worked wonderful, but I couldn't handle the side effects. I would take the mtx on Mondays and by Wed and Thurs I was so fatigued (not tired, mind you, but FATIGUED, like a semi ran me over) and then by the weekend I would be back on my feet only to do it again on Monday.
He took me off mtx and within a week my pain was back, so we discussed Humira, a biologic drug that you inject yourself at home either once a week or once every two weeks. This drug is freakin expensive and I don't have insurance, so I had to contact Abbott Pharmaceuticals and apply for assistance. I was lucky that they had that. I have been approved and was sent the Humira within the month.
Humira is great, so far. I've been on it since Feb 2008. Valentine's Day, actually. At first I started once every two weeks, with plaquenil and a drug called Arava. I would take prednisone only if I had a bad flare. I had them take me off prednisone in Dec because I had gained at least 40 pounds from it. Yikes! I'm already a bit on the round side so I did not need that.
The only problems with Humira are the constant sinus and ear infections I get which in turn makes me have to take antibiotics, which in turn gives me thrush in the mouth (yeast infection of the mouth) which then I have to take an antifungal medicine to get rid of that and I can't take the Humira while on antibiotics. Sinus and ear are the major infections I get, but just this last month I have developed psoriasis of the scalp and I had a little cut on my finger near my nail bed where I had cut a cuticle too close and it got infected. My finger and all the way up my arm to my elbow was swollen and red. My finger was about three times its normal size.
So I had to take some more antibiotics and antifungal medicines. And as soon as that cleared up I started getting another sinus infection. And these infections don't heal as quickly as you people who have an immune system that doesn't attack its own self. They take forever and a day to clear up. So I just got off the antibiotics and can't take my Humira or mtx for another week or so, which has caused me to go into one of the worst flares I have ever felt.
I woke up this morning at five a.m. and knew, just knew, it was going to be a bad day. I could feel my feet aching, my hands were swollen, my knees, my shoulders, hips and even elbows hurt so bad today. But...I still had to go out and run some errands. It is so hard to get out when you hurt so badly, but you have to. You can't hide from this disease, it will always be there. And when you have one autoimmune disease, you're risk of getting others is greatly increased.
So I'm sitting here, typing this even though my fingers are swollen and stiff and hurt like hell. I just want to raise awareness on this disease. I've had to literally drop down from a full work schedule to just working on weekends. It's hard to see how much this has affected me. When I think about what I was able to do 3 years ago and how now 90% of that is almost impossible to do, I just want to break down and cry, but I don't. I am stronger than this disease. I have to be.
It's really hard when you have an invisible disease. You look healthy, but inside you are in so much pain. People don't understand this disease until they have seen it firsthand in a close one or they experience it themselves. My mom had no idea how bad this disease would become, but now that she is living with me she sees the helplessness I have some days. She can just see my face and know if I am having a bad day. She knows that when it's stormy and rain is coming, I'm going to be hurting. Hell, in the summertime, I can tell whether it will rain in the area because my RA flares up.
Today was a bad day. I almost did break down and cry. I haven't had a flare this bad for a very long time. It's one of those flares that cripple you. Every joint seems to be swollen and inflamed. I can only go to sleep and hope tomorrow is better.
this girl said @ 12:40 AM0 comments written - so leave me one