RD Appointment Tomorrow | Arthritis Information

Here is my report:

1. Jaw: he agrees that I should see the oral surgeon, and to let him know that this is a refractory RA that we are trying to treat, and that while surgery would not be a good idea, he should assess and help with relief as possible and coordinate with him if necessary.
2. He felt that there is now a lot less swelling in my wrist, although there is still some left.  He said the loss in range of motion may be permanent, although I might be able to stretch some of the tendons out over time (?)  I told him that my right wrist still hurts a lot, and that my knuckles have been burning recently.  My fingers are hurting bad typing now but he pressed on all of my joints.   I am having more finger/knuckle pain recently.  He asked about my lower back/neck.  I said my lower back does hurt occasionally, but nothing by comparison.
3. I told him my knees sometimes hurt going up stairs, but he said they didn’t seem swollen.  He was really big on swelling this visit.  I just wanted to say “let me go 5 days without Mobic and I’ll show you some swelling!”  I was really swollen a few days ago and I'm doing somewhat better today, just in time for the appointment (of course)
4. My throat looks fine and was probably red from allergies.
5. The indentation in my hand is probably from muscle loss.
6. He didn’t really give me any insight/advice on my foot and elbow pain.  It’s RA, so…we’re trying to treat it…
7. He said the outer thigh pain is bursitis.
8. He found some tenderness in my shoulders that has been there a while.  He said it may be fibromyalgia or something.  But it doesn’t bother me that much in comparison to joint pain (although now it’s sore that he pushed on it!)  But I think those are the only fibromyalgia tender points I have (we went through this last October when he told me I was fine--the rest of the trigger points don't hurt, and my shoulders don't hurt--only when you push on them like that).  He said the forearm pain I've been having might be fibromyalgia but I tend to disagree because it is there when my joints are flaring the worst.  It's new too, just the past few days so I may have just held Jimmy too much this past weekend. 
9. Unless the x-rays show changes, I will continue to do monthly blood work and see him in 3 months.  He may refer me up to Vandy again if the x-ray comparison is bad.  He was thinking he had x-rays on file but he only ever took a foot x-ray (at the same appointment last October where he told me that he was certain from my blood work that I did not have an autoimmune disease of any kind.  Three months later…)  At that appointment he’d said that my foot had some damage/erosion but that it could be from playing soccer.  I don’t know if you can tell the difference between OA and RA erosion?  At the time he was convinced that I was healthy and just needed to exercise more so I don't put a lot of faith in his resulting opinions as to where bone damage came from.  I went by and picked up some x-rays of my wrist from last November that the GP ordered when this all started and dropped them off to him right after my appt.  Hopefully he will be able to review tonight and call tomorrow because he is out of town all next week.
10. Right before I left I asked about combination DMARD therapy because he made some reference to it, when discussing that I was on a huge dose of MTX, and if that didn’t work…so I said, what about that?  He said, we could try that, we could go back to the first things we tried.  I told him I’d never been on Plaquenil.  He noted that the Vandy doc had suggested we do that with MTX.  So he said “that’s a good idea” so now I’m on Plaq. too.  Thanks for figuring that out 7 months later.  Although we have discussed this before and he’d said no, if the MTX isn't working Plaq won't help but maybe he was thinking I’d been on it before?  And what I read is that plaq. may help the MTX work.  ANYway…
11. He is super super hesitant to use biologics, esp in light of recent reports.  I am not thrilled about the idea either, and would think twice if he’d told me to do it, but I’m also not thrilled about not being able to eat a sandwich and having my foot hurt with every step now.  He’s so focused on my wrist but the RA has moved on to other places…
12. Also, at the last visit, he said that if I was still anemic this time, he might give me a GI referral.  Well I was at 11.7 (under 12 is anemic) and he thought that was okay (?).  I should continue on the Ferrex.  I told him about the stomach burning incident and recent indigestion.  I should probably follow up with the GP to see about this, but he is not overly concerned.  Based on what people have told me about anemia of chronic disease and anemia being a symptom of RA, I’m not too worried. I don’t know why he was all worked up about it last time though. 
13. My current mood is “whatever.”  At least there’s no doubt its RA now and I’m not being treated like a crazy woman, and hopefully the x-rays will show something, and I have some hope that maybe the Plaq. Will help things, and I have my oral surgeon appointment coming in about a month.  With my luck my jaw will be fine by then, then flare horribly a month later.  But at least he can take x-rays to see if there is damage or not…