Okay, good news first. We have to do it this way because it sets the tone for the bad news.
I went to my Rheumy (2nd appointment with this one). Oh, my bloodwork looked so good for the RA, Sjogren's and I don't have Lupus. Really, my blood work looked really good. He checked a lot of stuff. My RA is totally under control. Of course, I never have any swelling to speak of and we've talked here a lot about blood work.
My problem is like Roxy's, FM, and the only treatment is narcotic pain killers. Plus all the bone and spine problems.
Now, here is the bad news and you might want to pay attention to this one because my former Rheumy did not. I've been anemic for a long time and my sed rate is up. But all the other blood work is good. What this means is that my bone marrow has been damaged. I have to go off the MTX entirely. If I don't, then I could suddenly die like fall over dead in two weeks kind of danger. He is sending a letter to my Primary to get me to a Hematologist because no one has ever investigated (and yes, I did ask) the anemia. Oh, no it's just normal. Well, in my case, it is not.
He also wants to take me off the Prednisone but is willing to let me taper this starting next month. When I've gone done on my MTX before, it absolutely killed me as far as starting a flare.
But somehow I think this doc might be right. For one thing, the Neurontin (which I can't take now either) really helped the pain and I believe a lot of pain I am experiencing is from other things. He was really concerned and took the time to explain it all even though I was quite relunctant to take this step.
I am so scared with all this bad news. Tomorrow is the ortho appointment and I'm sure he'll say no way to surgery under the circumstances. All that waiting for nothing. But I'm still going anyway.
The Rheumy is giving me folinic acid which is a form of folic acid that is used as an antidote to MTX. Then we will redo my bloodwork in a month. The other possibiities are blood transfusions and antiobiotics with possible long term hospitalization. I'm voting for going off the MTX and the folinic acid.
As distressing as this news is, especially in the light of the fact that I've had bone lesions showing up on my MRIs (which again my previous doc did not investigate further even at the request of the Radiologist), I am somewhat relieved to think that they might actually be able to improve my fatigue. I am also glad that this doctor was very straight forward with me and is cautious. I don't know why my former wasn't. Maybe all that has been happening just saved my life.
I'm really worried about the RA though coming back in force. He said that I am a very poor candidate for the biologics so that is out.
Wouldn't it be ironic as all get out if I got the RA into remission and the meds that did it kill me off.
Still, I feel better about it than you would think. I feel someone is finally paying attention.
Deanna, you can't kick the bucket any time soon, we need you
Hey! Like you said maybe all this was to save your life. I would not doubt it. And maybe to help you pave the way for something else in your life.
I am happy to hear that your RD has finally given you the answers you needed, even if not as good as you hoped.
I wish you the best with what you opted for and hope you do not have to go thru all that you mentioned above and just taper of MTX & folinic acid. Kinda a bummer about the biological, but ya know, who needs a stinking biological when your RA is considered under control
It must be something of a relief to feel you can trust a caregiver again. #1. You are not going to die. We won't allow it. You are too important to your family & to us. I just know that you will find all the answers you need & will have the correct treatment that you need. You have been jerked around to damn much. It is your time now. You will be fine. God Bless you, Deanna Trisha I'm not so unhappy about going off the MTX now that I've gotten over the initial shock. But knowing that it is out forever as well as all the biologics is kind of scary. I don't want to flare back up with RA again. Exercise is a real problem now with the nerve problems. I am having to adjust to the wheelchair. I'm hoping that PT pulls me out of this once more. They aren't lowering my overall number of meds, just changing them drastically. It is tempting to go out in the forest away from all the docs and meds and just see what happens. Tonight I am so discouraged. hmmmmmmmmm - if you don't find Deanna and I, look for us down some dark alley between Oregon and Arizona panhandling money for our next fix
Deanna, this may be good news. I hated mtx and definitely feel better off it than on it. My new rd is sending me in for mri's of my feet and hands. Even though I asked for hips and knees
Honey, a doctor that listens is worth seeing even if they prescribe you all the wrong things. What it does to our stress levels seeing these uncaring, uncompassionate watching their watches docs must be worse for our health. I know it puts me in a headspin/flare/depression for weeks. So I am going to look at this as good news. Don't rule out ortho yet, it it arthroscopic surgery, way easier on your body. Love you Rox Roxy, I'm not ruling out the ortho. I'm going for the surgery. MTX helped me more than anything else and it didn't make me sick until just now and what a slam that was. I'm glad you're getting MRIs on your feet and hands but agree with you that you need the others for your hips and knees. If this doctor doesn't start listening to you soon, second opinion her. I've been getting the "it's FM" far too much. It seems a good lump all category for not investigating further. That's as bad as them not really recognizing it as a disease. Now, they just want to dope us up. I don't call that a solution.
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