Tag Archives: Humira

Stepping Into The Unknown

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.

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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

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Filed under Humira, Questions, RAD

The Little Piggy That Bought Roast Beef

So Kim has been fighting the shingles for just over two weeks now. Her rash looks much better and has mostly cleared up. However, the nerve pain and fatigue have continued throughout. She stated Sunday night, “I have concluded that shingles are extremely painful.” This understatement coming from someone who is already in constant pain.

She’s been off her Humira since she was diagnosed with shingles as Humira and shingles don’t play well with each other. We had hoped there would be enough Humira in her system to help with her RAD symptoms until the rash went away and she was able to get back on it — and to a certain extent that may be the case — but her pain in certain joints has increased and her swelling is significant so it looks like that hasn’t held true.

Today she had a scheduled visit with her rheumatologist which came at a great time since the shingles rash seems to be done and we were hoping that he would put her back on the Humira. Turns out that was not going to happen. He wants her to stay off the Humira for at least two more weeks. He also suggested/asked Kim about stopping the Humira altogether and simply staying on her other medications without any biologics. His concern is that Kim could get the shingles again. Yes. We know that. But we also firmly believe that she would be in a wheelchair right now if it wasn’t for the Humira. So no, she will be going back on the Humira as soon as she can. If she gets shingles again, then maybe we will look at switching to another biologic.

Kim also talked with him about the neck and back pain that she has. He said that while “rheumatoid arthritis can affect the spine, it’s rare” and he’s not concerned. Really?!?! So this journal stating that 83% of RAD patients have their cervical spine affected in the first two years must be wrong. Or, maybe a percentage higher than 83% is needed to make it less rare. Or maybe we could look at this article, or this one, or this one which states that the spine is affected in up to 86% of those who are diagnosed with RAD? The frustrating part of this is that the doctor is suppose to know this. We should not have to be the one educating him!

I wish that was all, but it’s not. In our shower we have a tiny stainless steel mesh strainer in the drain to catch hair. The sort of thing that gets all gross, but is functional. Monday morning Kim used her foot to re-position it and in doing so felt one of the little mesh wires poke her toe. Enough for her to notice that it was sharp, but she didn’t notice any blood or a puncture mark so she didn’t think anything of it. Later on in the day she noticed that her toe — the middle one that didn’t stay home or go to the market, but instead bought roast beef — was painful. I looked at if for her when we went to bed, but didn’t see a mark on it. During the night the toe began to hurt to the point where she woke up from the pain. Seriously, moving a wire mesh strainer should not do this. When I got home for lunch on Tuesday the first thing I did was look at her toe. It was red, swollen, and warm to the touch — all indications of infection.

Infection and RAD together are not to be treated lightly. And since at least three of the drugs that Kim takes further weaken her already compromised immune system, it seemed to us that this should be taken seriously. We expected at least antibiotics. Instead, he looked at her toe, stated that it seemed fine, and told her to “keep an eye on it”. Fortunately, her toe looks the same today that it did yesterday, but we are keeping a very close eye on the little piggy with the roast beef.

Honestly, I’m frustrated. I’m upset that her rheumatologist doesn’t seem to take her pain seriously. I’m bothered that I know things about RAD that he doesn’t. I’m irritated that he treats a slightly elevated liver lab test like it’s a stage four cancer diagnosis and poo-poos an obvious infection. But most of all — and I’m being completely transparent — I’m frustrated with myself.

You see I quote the verses and make my statements about how I believe that God is sovereignly in control of everything including Kim’s diseases, yet too often I find myself doubting and questioning what He is doing. The truth is . . . . . this is hard. As I tweeted to a Rheum-mate today, “watching someone with RAD is like watching someone die a death of 1000 cuts.” Yes, I know all of the possibilities of how this could play out, both the good and the bad. I realize that the road ahead will likely not get easier. But even though I know what may come, when something happens to upset my little apple cart of life, I react wrongly. Oh, I may say the right words and paint on the brave face, but inside is a war where I fight God for control. And every single time, I lose. I wondered today as I reflected on my sin why I couldn’t be reminded constantly of His faithfulness in the good times and the bad? Why can’t I live in perpetual surrender to Him? I texted a few friends and asked for prayer. And to one of them I asked why I couldn’t keep the song that is below on constant replay in my head? Maybe some day I will learn to trust His goodness and faithfulness even when it doesn’t look so pleasant.

If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!
(Matthew 7:11 ESV)

The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. (Lamentations 3:22-23 ESV)

Update: Thursday afternoon. Kim’s toe looks much better. It seems at this point like her body was able to fight off the infection.

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Filed under God, Humira, RAD

A Quick Update

A couple of quick updates on Kim’s health.

So it was just one week ago that Kim was diagnosed with shingles and she is doing so-so. She still has some pain from the shingles and is quite easily fatigued, but is managing to continue with her list of things to do. For those of you who know Kim personally, you aren’t surprised by this. Her medications for the shingles have gone well except for the morphine, which she just stopped taking because of her reaction to it. She was given a short bump up on her daily prednisone dose, but she bumps back down tomorrow so we’re hoping that goes well. Last Friday was suppose to be her Humira shot day, but she can’t take the Humira as long as she has a rash.

Speaking of her Humira — we had hoped that there would be enough in her system to keep her symptoms at bay until the rash went away. It doesn’t appear that is the case, though we’re not positive. All we know is that her fingers have started swelling more and she is beginning to feel some pain in joints that she only has pain in when she isn’t on the Humira. It could be that she’s been three weeks now since her last shot, or it could just be her RAD flaring due to her immune system being under the stress of the shingles.

Now for some good news. She had her follow-up pulmonary function test last week and met with the pulmonologist this week to discuss the results. His words, “I’m tickled pink!” Which means we are too! All of her levels stayed the same except one and that one actually improved. This is great news! For now, we will continue the same treatment course we have been on for her lungs and follow up with more tests in six months.

Next week she goes to see her rheumatologist for her scheduled appointment. We’re hoping that the shingles rash will be completely gone by then so that she can go back on the Humira as soon as possible.

You keep him in perfect peace
whose mind is stayed on you,
because he trusts in you.
Trust in the LORD forever,
for the LORD GOD is an everlasting rock.
(Isaiah 26:3-4 ESV)

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Filed under God, Humira, RAD