Just some bitching...

[_sailorstar_]

I feel bad for not updating. I feel bad in general. I seem to be getting worse and not better at all. All these different meds, and no help. Its beyond frustrating. I want to talk to my specialist about it. Like maybe Ive been misdiagnosed. Yeah I wish. I wish she would say..oh yeah you dont have RA. You have something easily treatable or curable.

Comments

[_sailorstar_]

Yes I am thankful that there are more options now, but they come with a price. The side effects are horrendus. Plaquinil can make you blind, you have to get an eye exam evey 6 months while taking it. Methotrexate can cause liver failure and swelling of the lungs, so you have to get blood tests every 2 weeks at first and then every month (that was fun), plus you cannot have 1 single drop of alcohol while taking it (those are just a couple of the side effects. It is also used to cause spontanius abortions in egtopic pregnancies)
Enbrel can cause death through sepsis (they make you sighn a big form before they will even prescribe it to you, making sure you are aware that yes this drug can and has killed people) and some other fun stuff. And then theres good ol prednisone. The only thing that has helped me so far. It has all kinds of lovely side effects as well. These are just some of the most severe ones, there are many more. So when people say well at least you have alternitives...well these are the alternitives. Lesser of 2 evils I guess. But you can also see why Im so frustrated. Dealing with taking these drugs after fighting the insurance to pay for the (they are really expensive. Enbrel runs about 210$ a week), then dealing with each of the different side effects and dosing and injecting etc..its really hard sometimes.

[_sailorstar_]

I wish my insurance coverd "alternitive" stuff but it doesnt. Sometimes I wish I were in canada, just for the health care. I understand that your dad is probablly really excited about new treatments, even my nurse at my spevialist office was saying that about how there used to be no effective treatment. And Im sure there are people who only get minumal side effects and I envy them every day. Apparently (according to my specialist) because I have fibromyalgia, I have drug sensitivities, which means I get all the fun side effects. Im almost to the point where Im just going to let this disease do what its going to do to me and not do anything about it. Of course that is terrible to think, buts its hard to keep hoping that the next thing will work or that Ill even be able to tolerate it. I had to quit taking enbrel (the latest one) because it wasnt working and when I gave myself the shot I wouldnt be able to get out of bed for 2 days. And I had to do this twice a week. I have a 3 year old, and no one to help me, so I cant do it. I always wonder why cant I get some curable disease? Maybe someday there will be a cure for us, but that wont give me back all the time and things Ive lost to this disease. Im so sorry for sounding ungrateful, I really am grateful for your willingness to help me. You are a good person. :)

[_sailorstar_]

LOL Ive done that dance and boy Im sore in the morning!