My Journey with Rheumatoid Arthritis Medicine | Rheumatoid Arthritis Warrior

My Journey with Rheumatoid Arthritis Medicine

Wouldn’t it be fun to do a happy little blog? But, I was dancing through my happy mommy life and RA busted down my door. I did not pick this fight. I just decided to fight back.

This blog is written in reply to a question on yesterday’s blog about my journey with Rheumatoid Arthritis medicines. I do keep many personal details off the blog. However, I thought about this and realized it may help to document the RA medicine process, either for someone new to the idea of RA medicine or some doc in a dark office (only semi-private joke, click here to read.)

The first RA specialist I saw did not treat RA aggressively with Biologics. That was not the only reason that Dr. Laptop did not become my RA doctor. The RA specialist I finally got in to see prescribed methotrexate right away. She spent several minutes explaining Biologics to me and began the process of pre-approval for Humira with my insurance. I went on both medicines within a few weeks. This was several months after my RA symptoms had become “full blown.” There are more details here in my RA Onset Story.

The doctor was hopeful. She did seem to think that I would get much better. I kept telling her that I wanted to run and play tennis.

RheumatoidEnbrel sure click pen Arthritis medicines did help

The methotrexate and Humira helped a lot. However, the RA continued to spread until it had reached every joint. There really are joints that I did not know about until they hurt. The swelling went away. Some of my blood tests improved, but the anti-CCP continued to rise. So did my methotrexate dose.

After about a year, the rheumatologist doubled the Humira dose to one shot per week. Still, the best improvement of my RA symptoms was about fifty percent – never more and usually less. I would always tell her that I was hoping for more relief. I did not talk about running anymore; I’d say how much I wanted to be able to dress my baby or style my hair.

The doctor would often tell me about another patient my age who was getting better all the time. Of course, she’d had some joint replacements, but she was doing much better now. One day, I saw her – the other patient. She could not walk right. She had a permanent handicapped license plate. This was the example I’d been given repeatedly, saying that I should look forward to getting much better?

Changing RA medicines

It was difficult, but I finally changed RA specialists, hoping to try a different RA treatment. The next RA medicine I tried was Enbrel.  I began to use Enbrel about the time that my RA blog went live. Some of that story is on this site.

There were two weeks between the Enbrel and the Humira due to a kidney infection. I so appreciated that opportunity to learn a lot about how much the RA medicines were helping me with fatigue. A few days without the medicine and I had could barely move do to RA fatigue. I think there was also more pain and fever.

Enbrel did not help me as much as Humira had at first. It may have improved my RA joint symptoms about 20-30 percent. I had increasingly severe injection site reactions, but the RA doctor did not mind, so neither did I.

After about four months, I developed hives. I was treated by a dermatologist several times to no avail. The RA specialist did not want to try a different RA treatment, but I wondered if another rheumatologist would give another opinion.

By now, I had learned quite a bit from reading online and from talking to other RA’ers. I noticed there is a wide variety experiences – even remissions. I wanted the kind of improvement that we hear about in the RA drug commercials or in the drug companies’ online videos or in the newsletters in my email box…

There was another comment yesterday that I hope you did not miss. Songbird’s RA is like I described yesterday, but only when she is sick and cannot take methotrexate.  Her words were a blessing, partly because my turn may still come.

Last fall, I was so happy to find a new RA doctor and begin Orencia treatments. I had a lot of hope that this would be my magic carpet to escape RA. Not yet.

Next month the dose will be raised. So will my hope. And guess what? I was very happy last week to get my first handicapped parking permit.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

24 thoughts on “My Journey with Rheumatoid Arthritis Medicine

  • February 9, 2010 at 9:59 am
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    Kelly,
    Had Rheumy check up yesterday. He started telling me how RA couldn’t effect the 1st joint in my fingers – I thought of you…I thought of arguing, but I knew it wouldn’t do any good. After all, he IS the doctor not me! So many times I feel like I’m a hypochondriac b/c of all the doctors I see! When I read the posts that you write when you are sharing your heart, I feel like you are speaking for me. I wanted to be that Enbrel commercial. I want to have my life back – just little things like opening zip lock bags or jars and walking normally. I don’t have a handicap sticker yet for my car but, often ponder getting one. I feel like I will be surrendering to this disease if I get one – isn’t that silly!

    Reply
    • February 9, 2010 at 10:27 am
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      Krista!!

      When the doctor said that to me, I felt like he did not even believe what he was saying. It was a ridiculous statement. There were 2 others with me in the room. I did not argue aloud either, but the awkward silences showed we were all uncomfortable. Was he saying I was lying when I said those were my worst finger joints?

      That night, I spent hours online finding case studies in reputable journals which confirmed RA in the DIP joints. Several articles said that it is “more common than believed.” I wanted to wake everyone up and scream: LOOK!

      This is just one example. There are several issues like this DIP one. I am still trying to figure out: WHY does a dr. say something that is so wrong & so easily disproven? With all the resources & education he has? He must have heard of this, but discounts it. & Why?

      Just a funny coincidence I guess, but while you were mentioning “hypochondriac” just now, I was discussing this with someone on another post. -click here.

      Finally: If I were to see that same doc today, I hope that I’d have the confidence to tell him that I know he’s wrong. Hopefully.

      Reply
    • May 27, 2015 at 10:45 pm
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      I have had RA for 3 yrs now. I finally have an RA doc who seems to care about me and my pain. I am on Methotrexate and Humira. At first it was such a relief from my horrendous pain. I’ve been using these since march/april. Im finding that im quite ready for my next Humira injection 3-4 days before its due. Guess i may need to use Humira once a week? These 2 meds dont seem to help my fingers or the top of my foot, sadly. I still have the burning feeling on my spine as i also have Ankylosing Spondylitis. Burning feeling on my right hip if i lay on it too long 🙁 im thankful there are sites like this. Love and hugs to my fellow RA er’s!

      Reply
  • February 9, 2010 at 10:48 am
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    Talking about Medicine and the like – has anyone found sam-e supplement to be helpful with RA? I know people use it for regular Arthritis just wondering if it works for RA.

    Reply
  • February 9, 2010 at 11:26 am
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    We have a lot in common with our RA. A crummy first rheumatlolgist, MTX and Enbrel, then switching from Enbrel to Orencia. I have now been on Orencia for 5 months and can tell a big difference from last year after the Enbrel quit working. I am probably feeling about as good as I ever will with RA (still screwed up when compared to normal people). It is frustrating when you hear of other people doing so well on drugs that you are taking, but one person’s version of “well” may be different than my version. I would love to be able to put some running shoes on and go for a run before heading to work, or hop on my Trek road bike and ride 25-50 mile rides again. But I’m like you, I know thats not going to happen, so I just don’t think about it anymore. I hear a lot of people talking about remission from RA, I am not convinced it exists. I hate the numbness, sometimes I am so numb that I forget to be happy, I’m just going through the motions of life. I really hate that RA takes such a vital part of our life away from us, that we have to emotionally shut ourselves off sometimes just to survive day to day. I hope the Orencia will start working for you you soon.

    Reply
    • February 9, 2010 at 4:40 pm
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      Hi,
      I too would like to know about the adult facts of RA remission. We hear of complaints of RA but where are the blogs of the lucky ones in remission ?
      Love
      Inez

      Reply
      • February 10, 2010 at 8:47 am
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        I love this: “adult facts”! I guess we have to put this together for ourselves.

        The obvious answer is that when someone is feeling great, he/she does not spend time blogging about his illness. He plays tennis. :chic:

        Reply
  • February 9, 2010 at 11:38 am
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    Kelly, read this if you haven’t already. Great analogy on living with an auto-immune disease. The girl that wrote it has Lupus but, you know where Lupus fall in w/RA so I will just stop there…:-)

    Reply
  • February 9, 2010 at 12:27 pm
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    Kelly, thank you for writing this blog and being so honest about how hideous RA is. I have had RA for 8 years going on 9 in March and my experiences have been very similar to yours. It’s nice to read about your experiences to know that others are not feeling like the ones you see in those commercials of happy RA people. I started on plaquenil and MTX and prednisone, went off prednisone after 40 lb weight gain…didn’t care at that point if it was helping me, switched to enbrel and mtx, increased my dosage of enbrel to 2 shots a week, after 4 years on enbrel, switched to humira and increased my dosage of mtx, and currently I have increased my humira to once a week with a high dose of mtx. I keep hoping to feel better, but like you I would say I only feel about 50% relief and some days, not that much. I was a Physical Education teacher when I was diagnosed and just this past December was approved for a disability retirement as I couldn’t keep up with the demands of such a physical job. I absolutely loved teaching PE and did it for 24 years…sometimes I think how unfair this disease is….can make you really angry at times, ya know? Luckily I’m on facebook and can keep in touch that way, but it’s just not the same! I am trying hard to stay positive, but can be hard at times. I got my handicapped placard 7 years ago and everyone should get one who has trouble walking…it’s a lifesaver! Everyone stay strong and find the best rheumy you can…I’m lucky in that regard, my doc is great! Thanks again for all of your information.

    Reply
    • February 9, 2010 at 1:18 pm
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      Thank you, Lori. I really appreciate that.

      I’m sorry you were forced to stop such a cool career. I love teaching. I did a week as a PE teacher once when I was a substitute teacher during college.

      I guess you are another example showing you don’t get RA from being physically inactive… It seems like so many RA people I meet are quite tough physically, but our reputation is so much opposite. One more odd question…

      Reply
  • February 9, 2010 at 3:32 pm
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    Thanks for the post Kelly. It’s what should be posted in response to that ABC article. Only a few seem to get close to what their former life used to be. Although I still work, it gets harder and harder and I’ve had no social life for some time. There isn’t the energy. What little I have gets used up just to get through work and to do the most basic home chores – laundry and dishes. House cleaning, personal grooming, etc – what are those? I think I used to do those. I may still work, but at a huge cost. I move at one slow speed and that dwindles by the end of the day and takes a while to revvv up to in the morning. Should we be happy with a 50% response? Sure. But not content.

    I hope the Orencia helps, but sounds like you may need to do two biologicals (say Humira and Rituxan). Maybe have to throw in some plaquenil and/or sulfasalazine too. But that is a really scary thought, isn’t it? I’ll keep my toes crossed you don’t have to do that!

    Reply
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  • February 10, 2010 at 2:49 am
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    My journey is so similar, so familiar. I was diagnosed 8 years ago this March (yikes….that’s scary). Went on pred and methotrexate (low dose, about 12 mg/week) immediately to get the raging diagnosis flare under control. Pred is such, such a demon in angel’s clothes. The joints felt GREAT. I, however, was a raving lunatic. Talk about ‘roid rage, I’d be laughing hysterically one second, and crying just as hysterically the next. Pred threw me immediately into all the symptoms of menopause, 5 years after my last period. *THAT* was fun. The facial hair, the weight gain, all of it came to stay. But my joints felt great.

    Luckily, because I am very anti-pred, the RD started weaning me off of it after about 3 months. Not so luckily, the joints went bananas again. 1st finger joints, cervical spine, collar bones, ribs, all of them have been on fire at various times. As you said, I never knew I had so many joints until they started to hurt so badly.

    Tried to up the MTX dose, and couldn’t tolerate it. I went onto Remicade within 6 months from the diagnosis. It never worked 100% for me, mainly because I could never get up to therapeutic levels with the MTX. The most I could tolerate was 12.5 mg/week, and even at that had mouth sores, hair loss, violent headaches, violent gastic problems, the whole book of potential side-effects were mine. Didn’t matter if it was oral or injectable, it truely was a poison to me.

    Off MTX and onto Arava. Same deal….couldn’t tolerate it. Onto the baby DMARD, plaquenil. A little more than 4 years ago started with the next greatest hope, Orencia. It’s marginally better than the Remicade was, but now, after more than 4 years, I seem to becoming tolerant to it, and it’s not so good any longer. Next stop, once my insurance will recognize it, is tocilizumab, which was just approved by FDA last month.

    And yes. I too look at the TV ads, and the testimonials and happy, smiley people who achieve remission, and while I’m happy for them, I am honestly p*ssed-off it isn’t me, and I can’t achieve that. My sed rate’s down, my CRP and rheumatoid factor are down, but my joints are out of control, and my fatigue is off the charts.

    Yes, I too was happy when I got the happy little blue placard. I was not so happy when I had to go to part-time (3 days/week) work, but had to get over it, because I simply cannot handle more hours than that.

    And I was absolutely floored when about 6 months ago, I asked my RD “realistically, how much longer do I have before I have to go out on permanent disability?” And his response was “I’ll sign the paperwork today if you want it.”

    Yikes again. I’m only 54, and I used to be a Type-A power-player. Now, I’m a signature and a claim form away from SSDI.

    Reply
    • February 10, 2010 at 8:55 am
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      Roberta, Thank you for painting such a clear picture of what is probably much more “typical” than either the commercials or the textbooks. I wish every rheumatologist could read this.

      My hope is that even if there is not a cure during our lifetime, treatment is improved by both medicine & better understanding.

      Reply
  • February 10, 2010 at 7:58 am
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    I’m glad it was a hopeful comment.
    I do think it’s hard for people to understand a disease they cannot see. My husband is a very logical person who bases his approach to life on physical observations. If I walk more slowly than he does, well, I always did! (He’s 6’4″ and I am 5′ tall.) I’ve learned I need to be very specific when I tell him about things that are bothering me. It’s good practice for the times I see my doctor. I looked good on exam last fall, for instance, but I described ongoing night pain in a shoulder and knee that interfered with sleep. I went home with a different anti-inflammatory and new information that there are lots of them and some work better than others for different individuals, and the only way to find out is to try them. World.of.difference. Also confirmed that ongoing stomach upset was not due to Methotrexate but to Nabumetone. Who knew?
    It’s hard for me to understand a rheumatologist who doesn’t listen. I don’t know how they can treat RA or other complex diseases without a receptive ear.

    Reply
    • February 10, 2010 at 8:50 am
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      Song,
      “It’s hard for me to understand a rheumatologist who doesn’t listen. I don’t know how they can treat RA or other complex diseases without a receptive ear.”

      You can’t. That is the problem for so many.

      Reply
  • February 10, 2010 at 10:42 am
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    Professional patients….that we are! I hope the increased Orencia helps. You describe so well the waiting. When I tried my first Enbrel, I sat there waiting “well…well”. Wasn’t the right drug for me either. Looks like Actemra is. Thank you for your blogs. They are so helpful.

    Reply
  • February 12, 2010 at 12:56 am
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    Kelly, thank you so very much for sharing your RA journey with us. I continue to pray that you will find the medication that works for you and that your RA will go into remission never to be felt or heard from again!

    Reply
  • February 12, 2010 at 2:52 pm
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    It’s frustrating that each trial of a new biologic takes so long. I keep trying to tell myself that fighting RA is like running a marathon, not a sprint. (which is kinda funny because I never was a runner; and would be really happy if I could just handle a walk outside in the beautiful sunshine!)LOL

    Reply
    • February 12, 2010 at 11:11 pm
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      Julie, like a marathon, but we are actually being chased so we are trying to outrun RA!! Haha. :silly:

      Reply
  • March 14, 2010 at 4:02 am
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    Kelly, I saw this regarding fever. Wonder if it would be worth checking out?

    J Clin Rheumatol. 2010 Mar;16(2):88-9.

    Subacute thyroiditis presenting as Fever of unknown origin in a patient with rheumatoid arthritis under etanercept treatment.
    Vassilopoulos D, Sialevris K, Malahtari S, Deutsch M, Manolakopoulos S, Archimandritis AJ.

    From the Second Department of Medicine, Hippokration General Hospital, Athens University School of Medicine, Athens, Greece.

    PMID: 20216130 [PubMed – in process]

    Reply
  • May 19, 2010 at 11:49 pm
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    Hi Kelly,
    Thank You for sharing your story with us. My husband has RA and I’m constantly researching for him and myself. He recently just stopped taking Orencia, he had been on it for about 6-8months and didn’t get any relief. They say it could take up to 6 months but he was anxious for some kind of help he switched to a new one that’s out. (the name is escaping me, starts with an A-infusion) Anyways, he has been on Prednisone also, and I had been bothering him to get off of it. I’m in Nursing school and have learned all the problems it can cause. Plus he had gained 20 pounds or more. So finally after a long time on it, he has cut the Prednisone and his pain has increased dramatically obviously. I saw that you said your Grandpa had problems and was hoping you can let me know specifically what he thought was from the Prednisone. I would appreciate some insight. Feel free to email me if you don’t want to comment here. I pray that you and all the other people suffering from this horrible fight will get some relief. Be blessed! 🙂 Linda

    Reply

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