Bad Blood

The morning I woke up to go early to the clinic for a blood draw before work, I had a bad feeling. I just knew the results wouldn’t be good.

The following week I had an appointment with my rheumatologist and had the blood tests done in advance so that we could review the results together. While I understand the results of my usual blood tests, I find it helpful to view them with the doctor, so that I can ask questions and get his perspective on them.

One thing that is great about my doctor is that while the blood tests are seen as useful information, he also values speaking with me about how I am feeling. He values my perspective just as much as the blood test results.

I have been on a new medication (Xeljanz) since early December. It took about two months for me to feel that the medication was working in my system, but during February when I last saw him I had finally been feeling better. It was a relief to see the markedly improved inflammation blood test result at that time, along with the knowledge that my joints were overall feeling better. I had the hope that the drug would work and perhaps even last me a few years.

I felt a decline

But sometime in March and moving into April I felt a decline. While the fatigue had never let up much, I felt a further decrease in my energy levels. And joint aches increased with some days a little bit better than others. I feared the worst—a full medication failure.

Gloom grabbed my heart when I woke up the day of the blood test. I’m never happy to go to the lab because blood draws are so hard for me. But I was just convinced that the results would be disappointing.

I was right

A few days later, I was able to view the results online and found that my predictions of bad blood were right. My inflammation result (C-reactive protein) had more than doubled.

Surprisingly, my doctor was less disturbed by the blood test results than I was. The bad blood had gone to my brain and really depressed my mood. I felt bad. I was crabby. And I didn’t have much hope for improvement.

It felt like my rheumatoid arthritis had a taste of the drug, then spit it out with a laugh. “Ha!” it said. “Good try!” I imagined my blood cells laughing at me maniacally. It really is bad blood—bad to the bone. B-b-b-bad!

My doctor suggested researching another drug, but for now continuing on and seeing if the next blood test results would be better. Usually I see him every couple months, but this time I would come back in a shorter period.

For a couple days I moped

I bought myself chocolate cake and ate my feelings. Then I told myself the pity party was over and it was time to move forward. I got back to doing my daily exercises and started going to the pool for aqua therapy. Even if the drug was failing, these things would be good for me anyway.

There’s nothing I can do to make a drug work or fail. But I can do things to help myself with diet and exercise. Soon I will go back for the re-test and it may not be great, but I am already feeling better because I am taking care of my body better.

I’ve struggled with bad blood for as long as I can remember since my diagnosis at age two. I only remember having a normal inflammation test for a short period of time in my late teens. Ever since then my CRP has always been in the hot, hot, hot range. I may have bad blood, but I live with it as best I can.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • jhundley2018
    7 months ago

    Kelly, I could have written this myself. Except, I am 72 and you are young–even though you have been in the “battle” for a while. Recently I had surgery on a toe that was turning the wrong way and the pain was too much. Had to come off of my Xeljanz. So when I went back to it, the pain continued to be tremendous–up all night walking to get the pain down in my hands.Well, my daughter in law suggested I take another Alcat test (blood test) to identify sensitivities. I didn’t want to pay $500 so I took the last two tests I had taken, highlighted every acceptable food, and got on them and not cheating. Within 3 days the pain was coming down. And I had to get another blood test like you for my primary physician who also follows me. Long story short–C-RP had dropped from 50+ to 16. Even though 3 is normal I could tell how much better I was. Yoga seems to make a difference, swimming was suggested by my rheumatologist. I hope this encourages you. I just wanted you to know that the score can drop, and you can have some control over it. There is a chocolate bar–Lilly with Stevia and no sugar. I buy those to take care of the craving. Hope you can have some peace.

  • Kelly Mack moderator author
    6 months ago

    Thanks for sharing your story jhundley2018. Really appreciate the encouragement! Yes, I think it takes a lot of experimenting! And keeping on the path, even when you are not sure it is working. Every little bit I can do for myself seems to help. Such as aqua exercises in the pool–feel so much better when I can do that consistently. Thanks so much and hope you are staying well. Best, Kelly (RheumatoidArthritis.net Team)

  • Gail
    7 months ago

    I have been on all medications known to man for RA. I was diagnosed at the age of 28, 6 months after my son was born. I also had a 2 year old daughter. My rheumatologist put me on Enbrel while it was still in the testing stage. I was in the drug study for Enbrel for numerous years and was feeling great. Until the Enbrel just stopped working. Every new medicine I was put on did not help me. I’m now on an infusion every 4 months and it seems to be working. Of course I’m also on methotrexate, prednisone and other inflammation medicines. I am now 62 but hoping this new concoction of medicines continue to help.

  • Kelly Mack moderator author
    6 months ago

    Hi Gail, stick with it! It can be hard to know what to do when a medication stops working. Really glad you have found something that is helping. I think it just takes persistence–keep on fighting. Hope you stay well. Best, Kelly (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    7 months ago

    I am thrilled that my doctor allows me to discuss each remaining medication choice each time. We do not pull the trigger to change often but at least we have talked about everything before there are choices that may have to be made. We do this each appointment even if we have discussed them some other time.

  • Kelly Mack moderator author
    7 months ago

    Hi Rick, sounds like you have a terrific doctor! I am similar–I need to talk about it a lot before I make a change in medication. I also do a lot of online research. I’m not sure why I am so cautious, but I like taking my time on medication decisions. I find the switching process difficult and am always stressed about new side effects and whether or not it will work. While I like adventures, changing medication is not a type of adventure that I enjoy! LOL! Best, Kelly (RheumatoidArthritis.net Team)

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