Last Wednesday Kim and I went in to see her rheumatologist for her regular scheduled appointment. We brought our list. And now we need some help from our Rheum community.
In October, Kim got a very bad case of the shingles and since then she has been on a downward spiral with her RAD. Because of the shingles, she had to stop taking her Humira for about 8 weeks. When she was able to go back on the Humira, she took two doses and then had a herpetic outbreak in her mouth which meant that she had to stop the Humira again. This time she stopped for a couple of weeks before she was able to go back on it. The results of course of her not being on the Humira is that she is doing significantly worse. However, while we see a noticeable difference when Kim is not on the Humira, the disease is still progressing even with all of her medications including her Humira. As Kelly stated in this post from last week, since Kim was diagnosed a little over a year ago I have watched her “be able to do less every month than the month before“. The last few months have been very rough on Kim and so we put together our list of concerns and questions as we went to the rheumatologist’s appointment.
In the last few months Kim has gone from having daily pain mostly in just her hands and her back to her now having constant pain in her hands, wrists, back, neck, knees, hips, and feet. She also has the occasional pain in her ankles and elbows. Her hand pain is so severe that simply writing a check will cause her hand to cramp up in pain for minutes after. The other night I was outside and she peeled a half dozen kiwis for the kids. Doing so causes her left pinkie finger to spasm and stick straight out as far left as it can. It also took her about 20 minutes to peel the kiwi, but she got it done! Her back pain has been incredible and has caused her to max out on all of her pain medications that she can take. Even with all of her medications, she is never free from pain. It is always there though it may be diminished slightly. Her hips and knees pain has gotten excruciating. Laying flat in bed and crossing her ankles places too much pressure on her hips and knees and has become impossible. Simply shaving her legs has become a painful and almost impossible task. She drove home last week and was unable to use the cruise control because of the road conditions. Twenty minutes of driving left her hobbling like an old lady because simply pressing on the gas pedal caused pain in her feet, knees, and hips. The base of her thumbs were still sore the following day from gripping the steering wheel. Also, as her joint pain and apparent disease activity has increased, her breathing has worsened which makes us wonder what is going on with her lung disease. These are just a few of the things we wanted to talk about at her appointment.
The rheumatologist looked at the sheet that we gave him for less then five seconds. He talked with us a little bit and then did his physical examination of Kim’s joints. When he was finished he concluded that she has no noticeable swelling. We both looked at him like he was crazy. Kim’s fingers are swollen, stiff, and every one of them is noticeably crooked, but in his examination he said that the joints didn’t feel “squishy” so he doesn’t think there is inflammation. Also, he said that since her SED rate was low that he doesn’t see her RAD as being very active. I pushed back because Kim has never had a SED rate higher than an eight even when — in his examinations — she was visibly swollen. He then said that he believed that she was in pain, but that he was confused since Kim didn’t “fit the textbooks” for rheumatoid arthritis. I managed to keep my cool. He also said, “When I saw you a few months ago you were in remission and now you’re worse then you were at your diagnosis a year ago.” Yes, she’s worse than she was a year ago. No, she has never been in remission. Not by the old standards and not by the new standards put out by the ACR last year.
We asked for an MRI of Kim’s hands and her back. He agreed to do the MRI of the hand, but he continues to think that the back pain is unrelated to her RAD. It very well may be, but the links between back involvement and RAD are many and he is choosing to ignore this issue. However, he did refer her to pain clinic and the doctor there will order an MRI of her back so Kim will still get what she needs.
The rheumatologist then went on to say that he doesn’t think the reason that Kim is doing poorly is completely related to her RAD. His theory is that since she was diagnosed last fall and it is now late fall/early winter that this is simply a seasonal thing. That she has some undiagnosed, unknown “pain syndrome” that flares in the fall. He admitted that he was completely puzzled and wasn’t sure what to do. His orders however were that Kim should stop taking her MTX completely “as it doesn’t seem to be doing anything, and the side effect risks are too great to stay on it.” He wants her to stay on the Humira even though she has had two infectious outbreaks (shingles, herpetic sores) that were likely caused by her Humira. He wants to see her again in two months after she has been to pain clinic and if she’s not improving or is worsening then he would suggest that she get a second rheumatologist opinion.
So here are our questions for the Rheum community;
- Should she stop taking the MTX?
- If she does stop taking it what affect will that likely have on her lung disease that is caused by her RAD? (We are waiting to hear back from her pulmonologist before she stops taking it.)
- Should we be looking at another TNF inhibitor or another biologic since she has had two infections on the Humira?
- Since Humira and MTX work best taken together, why stop the MTX and not the Humira?
- Any suggestions on how to further approach discussing back pain and neck pain with a rheumatologist?
- Kim’s constant tendon cramping in her feet and hands and the numbness in her toes, RAD or something else?
We would appreciate any feedback. As always, we are extremely grateful for the love, support, and prayers from our family and our friends.
Update: Here is the follow up to this post. Losing