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Looking for some support on a rough day

Hi all,

Started Humira about 7 weeks ago. Had such a huge impact on my fatigue - brought my energy back up, etc. It was such a joy to feel "like myself" again. Fast-forward to today where I've been hit with such an intense flare, it's hard to believe! Exhaustion 9/10 - soreness, brain fog, you know the drill. It feels like it came out of the blue, though if I'm honest, I was so enjoying the improved energy, that I had been pushing through some signs of impending flare for the last week or so (sore joints, puffier fingers in the morning, etc.).

I read online that even with effective biologics, you can still have flares - the hope is just that they will be fewer and further between. So I'm not given up on fate Humira yet (in fact - before this flare, I had been feeling well for the longest period since my diagnosis!).

But I am feeling discouraged. I hate having to rely on my husband to do all the family stuff (even though he is happy to help me in that way), I hate my kids seeing me so drained, I hate thinking about all the work waiting for me at the office - and that if I don't go in tomorrow, it will start piling up, I hate not joining in on the cooking (which I love), I hate laying in bed when I want to be out running around. It will pass, I know. And I hate it right now. Thought I would post all of that, here, since eI know you will understand 😀 Many thanks for this community.

  1. Oh , I am so sorry that you woke up feeling awful yesterday. The first flare after starting a medication can really knock you in so many ways. How are you feeling today? Sending lots of love! <3

    1. Hello AllisonJane,

      I have been on biologics for 15 or more years. I can still remember my first one as if it was yesterday. That first biologic will knock you on your butt. My job allowed me to work from home at that time because I was so out of it. I couldn't stay awake for anything and felt like a truck had ran over me. My kids are grown, so I just had to have my husband to looked after me. I called him Mr. Mom while I was so out of it and he kept joking that I shouldn't get used to him cooking and cleaning. I had 4 grandkids at the time and this was the part I miss the most that I couldn't see them when they wanted to visit me. Trust me, this should get better with time. I believe I was like that for about 3 months. We are here if you need us. I hope things are getting better for you.

      Take care,

      Diane T

      1. Thanks to you both for your support! I’m feeling a fair bit better (though still tired). I’m also paying better attention to what I need, getting some rest, and trying not to feel guilty about it LOL. Many thanks!

      2. We have all been exactly where you are. The best thing you can do is rest when you need it. Listen to your body. It can be so frustrating when you cannot do the small things that we normally do. Sending prayers your way that you feel better soon!

        Take care,
        Kerry

    2. This support was really so lovely from all of you - many thanks. Just a quick follow-up: flare lasted a little over a week (which was shorter than usual!), and pain wasn't as intense as usual, so those are all good signs. I'm also quite sure that what happened was that I was so excited to have my energy "back", that I overdid it, LOL. This diagnosis has certainly helped me pay more attention to these kinds of things. I guess I had hoped that because the Humira was working, it meant that I was "better". Have to continue working on this acceptance piece - that I CAN feel very good, and to keep it that way, I need to keep pacing. One thing at a time, I suppose. Thanks again. Fingers crossed!

      1. , thanks so much for checking in and updating us all. I am so happy to hear that the flare has calmed down now, and that it wasn't as intense as usual. Also, I feel you on the pacing!!! It took me a long time to learn that I need to pace regardless of how I'm feeling. It is so easy to overdo it sometimes!

    3. Having a rough day too. It's hard to find support when others don't understand what every day is like but you guys get it and are really fantastic. The unrelenting pain is so draining and for a while now I've been so exhausted, not from fatigue, but my brain is struggling with the everyday constant sore joints and shocking nerve pain. I can't take any of the usual meds as I have a bad heart and as my inflammation markers are low I can't get biologics so I'm struggling on Panadol. I am allowed Tramadol but as I am only prescribed 50 mg per day I go without most days to save them up for flares where I can easily use 250mg over the day to keep out of the emergency dept. I've asked my GP many times for more Tramadol but the government higher ups won't grant it. I'm miserable and not doing so well. Lost and can't find a way to improve my situation. My rheumatologist is trying his hardest but his hands are tied too. Thanks for being here and listening

      1. So sorry to hear this . I can really hear how much you are struggling in your post. May I ask if you are from another country other than the States? It sounds terrible that you are not allowed medication that can makes your psoriatic arthritis more bearable. Vickie W., Community Moderator

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