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Thoughts on Humira and Xeljanz

Posted , 5 users are following.

slm222
slm222

As some of you might know, I was scheduled for a clinical trial with Enbrel last month and unfortunately the trial ended before I could get in. Well as the saying goes, when one door closes another one opens up....I am now in line for another clinical trial, this one is for 5-6 years instead of just one, which is great. I have to wait one more month as I have to be on MTX for 4 months for this trial instead of 3 like the other one.

This new trial will have me on either Humira or Xeljanz (they don't tell you up front or give you an option) and I'm wondering if anyone has experience with either one of these drugs and how they are helping or not helping you.

So far my liver and kidneys have tolertaed the MTX fine (but my hair falls out in clumps and I swear I have more pain with it) and I'll remain on it while taking the other drug that they choose for me.

Do any of these drugs take care of the fatigue? I have to say that the fatigue is probably the worst symptom for me. The pain is obviously awful too, but the malaise and tiredness is so depressing. I'm hoping the new biologics will help with that. 

Any discussion on these drugs would be very much appreciated! Thanks in advance!

0 likes, 18 replies

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  • cheria
    cheria slm222

    Posted

    Hi, for me, the MTX definitely caused more pain as did the biologics you are referring to Humira and Xeljanz). They did not help with tiredness. What helped with tiredness was finding thru research that what was going on was severe adrenal fatique from the RA medications and prednisone. The MTX and biologics both lower the immune system, which then trigger other conditions, causing more pain, inflammation, infections, fibromyalga and nutritional imbalances (must take 2000 to 5000mg D3 with 1200 mg Calcium carbonate and magnesium glycinate which all need each other in order to treat RA and secondary illnesses (10 1/2 to 14 hrs sleep nightly is critical for RA and pain management- balancing of these things induces healthy restful night sleep). Also a good multi vitamin and fish oil (do not take de-odorized). It is very helpful to fully research adrenal exhaustion to help yourself and be proactive with your condition and wellness.
    • slm222
      slm222 cheria

      Posted

      Hi cheria, I did read up on the adrenal exhaustion. Wow. Just another thing to deal with, right!?! As for Prednisone and meds like it, I won't touch the stuff. I've had too many friends that are still dealing with the ramifications of Prednisone years after taking it. I've already told all of my doctors that they don't need to ever ask me if I want it.

      I do take fish oil supplements as well as tumeric/curcumidin supplements. I'll check into the others you mention. As for sleep....if I slept 10 1/2 to 14 hours a day, I'd do nothing but sleep and work and I need more of a life than that. I'm tired all of the time anyway, regardless of how much sleep I get (even on those nights that I DO get 10 hours) so I may as well have some fun if I can. smile

      Thanks for all of your helpful information! I really appreciate it!

  • Light
    Light slm222

    Posted

    I agree with you about the fatigue being the worst symptom. It was for me too!

    Though I'm not familiar with either of these two drugs, in general, the biologics should help with everything including fatigue. They did me.

    I was on Rituximab recently and my joints feel great.

    You're a lucky one with those clinical trials because it doesnlt cost a bean... Am I right?

    All the best!

    • slm222
      slm222 Light

      Posted

      Thank you Light! It seems that is always my first question to my Rheumatologist...will this help the fatigue? I hate being tired all of the time. And it's not a regular tired. It feels like someone is literally pulling my soul out from behind me.

      Yes, the clinical trials will pay for everything except the MTX that I take, and they will also pay me $50 US Dollars for every visit to them, which is every 3 months. So they kind of DO pay for the MTX as well. smile It's the only way I can really get treated (clinical trials) as I have no health insurance.

  • tammierick
    tammierick slm222

    Posted

    I was on both humira and xeljanz. Not at the same time. Humira helped me with the pain and swelling and fatigue. Xeljanz didnt do anything for me just gave me headaches. Good luck to you
    • slm222
      slm222 tammierick

      Posted

      Thank you tammierick. I am currently on methotrexate as it is a requirement to get on the clinical trial and I hate it. It causes flare ups, nausea and major hair loss, but I have to take it to get in on the trial. I had read that Xeljanz worked well for people who didn't respond well to methotrexate. But I like that Humira is an injection twice a week instead of a pill twice a day with the Xeljanz. Are you still on the Humira? I just want something to work! 😕
    • cheria
      cheria slm222

      Posted

      Sue, are you sure the humira injection is given twice a week? Humira is only regulated safely for twice a month for RA.
    • slm222
      slm222 cheria

      Posted

      I'm not sure why it's not showing up but I wrote back to you earlier today cheria...anyway, I meant to say every other week on the Humira. It's 40mg injections. I kind of hope I end up with that because the Xeljanz means taking it twice a day and I'm lucky I remember taking my meds ONCE a day. wink 
    • cheria
      cheria slm222

      Posted

      Hi sue, I know what you mean about remembering to take medication. I have to set the music tone alarm on my phone to guide me!
  • tammierick
    tammierick slm222

    Posted

    When i was on humira my shot was twice a month or every other week. I know some take it weekly. I am not on humira wish i still was. But was taken off of it because of nose ulcers which now we treat with a daily antibiotic. Currently on orencia. Good luck in your trial. I am with you on the fact....i just want something to take the pain away
    • slm222
      slm222 tammierick

      Posted

      Yes, I messed up when I said twice a week...I meant to say twice a month on the Humira. I'm glad to hear it worked for you but sorry that it caused nose ulcers. Ugh. I was speaking to someone the other day who was on Enbrel for 2 years and she loved it; she said it helped her SO much, BUT she ended up with breast cancer and her oncologist insisted she get off of it, even though they're not sure that's what cause the cancer. All of these drugs scare me a little. I was so sick all weekend from getting back on the methotrexate. I ended up with a huge flare up all over my body but my shoulders got the worse of it and I was sick with stomach cramps and all that come with those. Then last night it attacked my left index finger and it's so swollen, stiff and sore. I could not even use it this morning, but it's better tonight. I hate this stupid disease. And I think I hate the meds for it just as much. The MTX is something I have to stay on while I'm on the clinical trial and I'm not at all crazy about that. sad
  • cheria
    cheria slm222

    Posted

    Methotrexate induces so much illness and pain, and I can't rationalize why it is attempted in RA treatment, unless its only for a limited kind of RA, knowing there is over 149 kinds of RA. I don't think there has been enough medical research on the many kinds of RA and the treatments for various kinds. I also know that there are many diseases that mimic RA, and are treated with RA medications.
    • slm222
      slm222 cheria

      Posted

      I'm still dealing with the flare up after restarting the MTX last Wednesday. Today it is now focusing in my left shoulder. I felt them both going out on Friday but the right one went into full flare and then my left index finger and now the left shoulder. I think the MTX is just the 'standard' med for RA for whatever reason, but I had much better results (as far as side effects are concerned) with the Leflunomide. I cringe at the thought of having to take another dose, but I am going to change it from Wednesday evenings to Monday evenings so that at least my weekends aren't wasted with the side effects. sad 
    • cheria
      cheria slm222

      Posted

      It seems to me that if MTX is inducing the very thing they are suppose to treat, than it is not a correct medication for that person, and just keeps me in constant RA and fibromyalga pain, and keeps me a very active patient, with mismanaged RA. The MTX depletes large amts of magnesium from the body causing the condition to further manifest, and I found through my own research and exp that I must not look at mtx as having just bad side effects, but greatly exasperating the particular RA condition.
    • slm222
      slm222 cheria

      Posted

      I couldn't agree more, cheria. I'm thinking money has something to do with it. It always does. They definitely charge more for MTX than other DMARDS.
    • cheria
      cheria slm222

      Posted

      I'm thinking it is more than just the prescriptions but the continuous never ending care that is needed for the physician, as the disease continues to be out of control, with the medications lowering the immune system, than triggering other major conditions, infections, diseases..effecting a person systemically..without proper education on how to manage..eventually effecting major body systems like the adrenals..which are the master hormone regulating gland in the body..
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