I know I've been gone a very LONG time and I do apologize. Some of you will remember that I am on the University of Alabama aggressive RA study which I have to say isn't going too well. Awhile back I got a nasty chest cold which turned into pneumonia and thanks to RA and the MTX from the study I ended up in the hospital for a spell. Since then, I've been trying to get back on track. Struggling with some depression and anger since the study doesn't seem to be doing me any good. I have more pains and more flares since I started the study than before I began, not to mention that the oral MTX makes me VERY sick. I'm up to 20mg's a week now. I've expressed my concerns with my doc and he thinks I should stick with the study for another 3 months but I'm so frustrated after the last 3-4 months. I really don't mean to jump on the board to whine and complain. I just thought I'd drop in to say hello and give you all an update on that good ole University of Alabama Study. I'm sure MTX is wonderful for some, my body just doesn't seem to want to cooperate with it. Anyway, hope this finds all of you well and in good spirits. I have to drag myself to work here in a bit...pains in both my knees today (yuck). I'll try to jump back on this evening to catch up on the numerous posts I've missed.
So many hugs and so much Love to you,
Honey; I've got to agree with Pam. If your not happy with this study by all means get out!! MTX has been a wonder drug for me, and many here like me....but it's been an absolute nightmare for many others. It's not for everyone and I think after all this time it's clear it's not for you!! These studies are looking for data to add to their findings. I'm just afraid they are not looking out for whats best for Neasy. Only you can decide though. Hope to see more of you here when you can. Take Care of yourself...and keep us posted. You might be out of site around here; but your certainly not out of mind. We miss you. Lovie Hey Neasy!!! I have thought about posting a post to see where you have been to see if you would answer, BUT I figured that it would just get lost in the shuffle. We have missed you! I am sorry you are not doing to well, and you are still in that study. I hope that the 3 months go by really fast for ya! Hope to have ya postin' again real soon!!
Welcome back sweetie, sorry you are not doing well but it is so good to see you here!!!!! Let's party NEASY IS BACK!!!!!!! NEASY IS BACK!!!!! HIP HIP HOORAY!!! NEASY IS BACK!!!!
What sweet post...made me feel like I just came home from a long journey. Loved the Tigger meme.
As far as working, oh yes I am. Except for the lovely little stop over in the hospital. I've literally dragged myself to work in so much pain I'd rather die but I have to pay the bills somehow. Of course, I've missed a lot too and wonder how long my employer will tolerate it but there's nothing I can do. Not like I'm playing hooky. I've been on every flippin pain killer I can think of and my study nurse says Palladone, morphine or methadone is the next step. I can't even work when I take Darvocet or Oxycodone..how in the world do they expect me to work on something even stronger. I'll be a walking zombie...that is if I'm awake. I'm so afraid of disability being around the corner but I'm even more afraid that I'll lose my job and be denied disability. Man I hate this disease!! MTX has definately been a nightmare for me but my Rheumy keeps telling me that if I hang in there 3 more months he really believes the study will put me on enbrel injections instead of placebo. That means enbrel + enbrel. I just don't know what to do guys. The study is NOT good for me at this point but there's a possibility that it will be in 3 months. On the other hand what direction do I go without it?? I try to stay as positive as possible and keep my sense of humor but as you all know....it's so hard sometimes. My Mother has told me I can go back home and live with her and she will take care of me...OMG how humiliating. I love my Mother but I cannot and will not let her "take care" of me. The woman already raised me...she needs a life. Although I do have a wonderful boyfriend that is very good to me, I have realized that he is in denial about this disease. He thinks I'm just being lazy and that I need to eat right, exercise and quit smoking and I'll be fine. Good Lord, I wish that's all it took. As good as he is, sometimes I want to kick his butt to the curb for his ignorance. This is an example of my week. Monday I'm supposed to be to work at 7am. I made it around 9am due to the fact I was still vomiting and completly drained from taking MTX on Saturday. Tuesday I wake up with severe pain in my left knee and have to work a 12 hour shift. I'm dragging myself around work the best I can as two of the girls are making fun of me, not realizing I'm right around the corner. Wednesday I wake up and the left knee is better and now severe pain in my right knee and left shoulder. I have to work from 1pm-7pm...again dragging myself around completely embarrassed because I know people are snickering. Today, I'm off so it's a Darvocet day because that's all the FREAKING Rhuemy will give me for now. Knees are tender but not bad and the left shoulder is about a 7 on a scale of 1-10. Okay, Okay...I'm really babbling on. Anyway, if any of you have any ideas or input on what has worked for you that perhaps I could try...I'm very open to suggestion. In the meantime I'm gonna go try to catch up on some posts before the Darvy knocks me out. I love you all and thank you for your support.
I'm sorry you are having so much trouble on your study. I have the same problem with MTX as you seem to be having. My rheumy suggested when I was on 20 mg that I take the pills or shots 10-12 hours apart, i.e. at night before bed and then in the a.m. with food. Also to take 5 folic acid pills per day for three days starting with the first mtx. I did try this and it helped immensely. I still got a little queasy but only a little. There is nothing worse than being in pain to begin with and then being sick to your stomach on top of it. I am now on lowered mtx but on remicade every 5-6 weeks. Maybe your study will let you try this method and see if you tolerate the mtx better. We can always hope! Hang in there. Marilyn Peace & Love....Neasy luekavorin calcium (sp?) is a drug prescribed as an mtx rescue. It helped me. It's a generic so it is pretty cheap. See if your study will let you have it. You are just about at the point in time when the mtx will start to work well. I am glad to be off mtx, folic, and luekavorin calcium. I'm much more comfortable on Arava. ps Rest does help when you are sick. You sound pretty sick. I'm so sorry! Thanks Marian I'll check into it. I'm so open to any suggestions. Peace & Love...Neasy
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