My First Rheumatologist Appointment

I had my first Rheumatologist appointment on August 18th. I decided that I probably needed to go see one in July. My joint pain had gotten to the point where it’s been unbearable some days. So last month I went to the day clinic at my doctor’s office and had a bunch of labs ran along with some hand X-rays to see what was going on. Everything came back good(except for my white blood cell count, but my IBD had been flaring so…). I got a referral to see a Rheumatologist but I was not able to see him until the 18th because I was out of town for work. I was not particularly happy that I had to put my health on hold but I did get to see my family while I was gone which was a plus!

You need your medications changed. Humira is no longer working for you.I really like my Rheumatologist(Dr. C) a lot. He asked me a lot of questions and listened to everything that I had to say. There’s a difference between listening and listening. And he really listened. That can make a world of difference with a doctor. At least to me.

He seemed really concerned with everything that has been going on with me. Since last December either my joints, IND Colitis or Psoriasis has been acting up(sometimes all at the same time) and he said that it’s pretty obvious to him that I need to switch biologics. And I agree with him. I don’t feel that Humira is really working anymore. My immune system is always attacking something it seems like. Every time I have a flare-up of my IND Colitis I tell Dr. M this and so far nothing has been done about it.

Dr. C is going to be sending my GI(Dr. M) my patient summary report from my visit and tell him that I have arthritis due to poorly managed IBD. So it’ll be interesting to see what happens. Because Dr. M had wanted to do a colonoscopy when I had to start my third round(yes, THIRD!) of prednisone from my flare that started up mid-July. I told them no, that I didn’t think that the Humira is working and that I wanted an antibody test. So he came back and said that we could wait for the colonoscopy and that he wanted to see me. The soonest that they can get me in is November 22nd! Which is a ridiculously LONG time!

When I explained all of this to Dr. C and he didn’t seem very happy. I don’t know when I’m coming off of the prednisone(still on 40mg) and I don’t know what the exact plan is. Dr. C asked me why I didn’t want to do the colonoscopy and I told him that I felt like it was a waste of my time and money when it seems pretty obvious that the Humira is no longer working. I may eventually still have to get one but we will see what happens. I have to call my GI nurse on the 22nd and see what the plan is.

Bando Agenda
My new planner to help me keep track of doctors appointments

Dr. C doesn’t think I have Lyme’s Disease or drug induced Lupus. He’s running some more blood work and I got some hip X-rays done. I’m hoping to have these results this week sometime. Right now my diagnosis is arthritis due to Ulcerative Colitis. Can’t say Indeterminate Colitis because there isn’t a diagnostic code for that! Dr. C doesn’t feel that the antibody test for the Humira is worth it right now. It could come back positive for antibodies and I’d need to switch medications. Or it could come back negative and I’d still need to switch medications because it’s pretty obvious from a clinical standpoint that the Humira is no longer working all that well. And it’s apparently between $200-$800 to run the test and I already have enough(and more coming) in medical bills.

Dr. C inspected pretty much all of my joints and checked my flexibility. I haven’t lost any range of motion which is good. And there weren’t any joints that were obviously red and swollen at the time. He also said he’s going to let Dr. M decide my next course of treatment since he’s the one handling my biologics for IBD. I really hope that Dr. M getting my notes from Dr. C will help him get into gear about changing my medication. I’m tired of being in pain just about every day.

I have a follow up in six weeks with Dr. C. I’m not sure what all we will be going over that visit but hopefully I’ll have been able to make some progress on getting my medication changed. I’m not sure if Dr. C will become one of my regular doctors or not. I think it’ll all depend on what the blood work says.

At the end of my visit, Dr. C asked me if I was ok and I ended up having a bit of a meltdown. At this point, I’m pretty frustrated with Dr. M and how my IBD is being managed. Before now, things have been fine with him. I’m not sure what changed this flare but I’m ready for things to get better. Right now I’m not planning on switching doctors. I already drive 2.5 hrs to see mine and I don’t want to go back to the GI office in town. We will see how the rest of the year goes before I decide what I’m doing.

Dr. C also said that he wishes he could cure all of us so that we didn’t have to live with chronic illnesses. That made me like him more. It’s not often that I hear a doctor say that.

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Time To See A Rheumatologist

Time To See A Rheumatologist - Motorcycles, Books and Colitis

Over the last year or so I’ve been having some problems with joint pain in my hands. I’ve had three “flare ups” of joint pain since last fall. This time was, I guess you could say, the last straw for me. It’s gotten to the point that some days I can’t really handle the pain anymore. I’ve been waking up again with painful hands and swollen fingers. There’s also been a few times that my ankles and feet hurt enough in the middle of the night that they’ll wake me up and then I have a hard time getting back to sleep. I’ve also been in enough pain at times I was pretty much in tears and I finally decided that I had enough.

I went and saw another doctor at my doctor’s office last week(my regular doctors schedule was full). I explained to her what was going on and she feels like something is going on with my immune system and my joints. She ordered a bunch of labs to check for Rheumatoid Arthritis, Gout and my ANA factor. These tests all came back within normal limits. The only things that were high were my glucose(I wasn’t fasting) and my WBC count(which I already expected to be high because my Indeterminate Colitis was flaring). I also got some xrays of my hands done to check for joint damage and there wasn’t any found. This doctor decided to get me a referral to see a Rheumatologist.

I called my doctors office yesterday to figure out what was going on with my referral. I hadn’t heard anything yet from the Rheumatologist and I wanted to make sure that the referral was sent and it had been. So I called the Rheumatologist office to see what was going on. I apparently got accepted as a patient on Tuesday but when I was talking to the scheduler I was told that I would be placed on a waiting list to schedule my appointment with the doctor. Which I thought was pretty odd. It also made me nervous because I hadn’t asked how long that waiting list was or when they thought they would call me.

And then I got a surprise Wednesday at dinner. It was the Rheumatologist office calling me to schedule my appointment! I get in to see them Aug 18th after I’m back home from training for work. I’m so very happy about this and hope that we will be able to figure out what is going on with my joints. I hope that this appointment goes well, that I can advocate for myself well and that I have a good doctor.

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