Actemra, 5 weeks #lupus #ra

I’ve had 5 Actemra infusions. This month my doctor wants to see me after 5 weeks (instead of the usual 4) to see what happens with my symptoms when the Actemra wears off. At my last appointment he asked me how I feel now compared to how I was feeling a year ago. I thought about it, I thought about all the things I write in my blog. I told him that I don’t feel any different than I did a year ago. I really have not felt any significant improvement since starting the Actemra. I’ve kept a blog, and a journal, and recently, a log of my fevers. I’ve thought about all the activities I do regularly, and whether or not any of them have gotten any easier. I just really don’t feel improvement in my pain or stiffness.

My eczema rash on my inner elbow has gotten better. But it got worse after my 4th infusion. He said I looked less red when I was there last time. My lupus face rash seems less intense for now. I haven’t broken out in the hot sunburn-like rash all over my body this month. This month I’ve still had the red knee rash, the red hot itchy painful feet, and the burning itchy rash on the backs of my knees. My hands haven’t had a rash but the pain is still the same. My raynaud’s is better, and the doctor pointed it out, but it gets better every summer. My feet and hands don’t get cold and numb when it’s 80-90 degrees out.

My fevers are still kicking my ass 3 times a day. They don’t always register high on the thermometer. Sometimes the number is “normal” and I feel hot and sick, and sometimes the number can be high but I don’t necessarily feel hot. I’m on 800mg ibuprofen (Duexis) 3 times a day, and I know that affects my temperature. I would feel a lot worse without it I can’t eat a cooked meal without spiking a fever, or move around too much without getting hot and sick. And I definitely can’t be outside. Sometimes I have to reschedule doctor appointments because it’s just too hot to drive 3 hours. Sometimes sitting still I’m just so hot I want to cry.

I’ve been reading blogs from last year and the beginning of this year. I’m still dealing with the same symptoms I was writing about in those blogs.

The doctor will probably decide whether or not to continue Actemra when I see him again. I’m still waiting to see how I feel on that 5th week, but I’m not expecting to feel different since I’ve never really felt any relief to begin with.

My muscle pain and fatigue is pretty bad. I feel weak. I was in the pool in August, doing mild exercise. Just moving around, really. I’m still sore and tired from it. It’s made me feel weaker than usual. It’s been hard to explain to doctors that this is why I can’t exercise. I never seem to recover. I never seem to get stronger.

It’s been pretty hot here. I’m clinging to sanity by wearing a frozen towel around my neck.

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9 Comments

  1. I would hate to continue on a medication that doesn’t seem to be working. I would think every weird thing that happened to me was from the Actemra. I overanalyze. Feel better my friend.
    mo

    • Thank you, I hope you’re doing well. I wasted 18 months on Benlysta, I definitely don’t wanna do that again. I sort of panic when I think about it like I can’t tell if I’m improving or not, but I’ve decided that if I’m not feeling something remarkably different, then it’s not working.

  2. thank goodness you have a lovely mum near to help and support you. Wish I had a magic wand I’d make you better as my first wish. Stay strong and if you need a faraway ear to grumble to you can get me on Twitter and Facebook

  3. Stay strong my friend. I know what it’s like. Constantly running a fever for feeling like it. I have had a long week. Planning to make a blog post out of it. And hoping I can get some extra sleep Saturday. Going into work Thursday and Friday. If you need to chat I’m always here. Your friend Chelsea

  4. Hey Jill,
    I’ve come across your blog while searching for information about lupus… And ended up reading all of your posts. Some of your texts could be written by me… It helped me a lot because at the moment I’m trying to find an explanation for all the weird stuff that’s going on in my body. Lupus was on my mind for about a year now… But everyone told me that it was never lupus (thanks, dr House!) so I almost dismissed this option… Your blog showed me that lupus is the most probable explanation for it. On Monday I will get the first bloodwork results.
    I was very sorry for you when I read your odysee… But also impressed how tough you are! You’re going through hell and still keep on fighting – my fullest admiration for that!
    Sorry for the bad grammar – I’m from Germany.
    If you want we could text sometime… Maybe we can help each other. 🙂
    Greets,
    Totenkopfschabe

    • Hello there!
      I’m glad that you’ve found my blog and that it has been helpful for you in some way. I don’t really feel tough sometimes, but writing helps, so thank you for taking the time to read it. It’s so frustrating that lupus is easily dismissed or forgotten by doctors. The most important thing for the doctor to pay attention to is your symptoms, sometimes bloodwork doesn’t always match with how you’re feeling. I hope you get some answers soon and a new treatment to help you feel better. Feel free to comment anytime and let me know how things are going. Don’t worry about your grammar, it’s better than some Americans I know. 🙂
      I also have a twitter if you like tweeting @chronicallyjill
      take care
      Jill

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