Thursday, April 19, 2012

Humor Me, Humira!

As I said in my last post, the time between getting off of Methotrexate and on to Humira took several weeks longer than I expected it to. 

I got the TB test done, and didn’t hear from my doctor that the results were negative until a week later when I e-mailed him.

Then came the adventure of trying to procure Humira… 

My doctor submitted the prescription to CVS.  When I went to CVS to pick it up, they told me that my insurance refused to fill the prescription at a commercial pharmacy and that it had to be submitted to a specialty pharmacy. 

So I e-mailed my doctor and called his office, saying that CVS had rejected it, and I had a number where they needed to submit it, but didn’t know what the pharmacy was or  where it was located.

This was Tuesday morning.  I got a call back on Tuesday evening, saying that the prescription was submitted to the specialty pharmacy.

As luck (I guess you can call it that) had it, I was going out to the place where the pharmacy is yesterday.  I don’t drive, and it is almost a 40 minute bus ride.

I got to the place Wednesday morning, and immediately went to the pharmacy.  They told me they had no prescription on file for me.  Frantically, I called my doctor’s office, and happened to get the person who had left me a message that the prescription had been submitted.  I explained the situation, and she said that actually, my doctor needed to review the prescription, and hadn’t got around to it yet.

She said she would try and make sure that it got taken care of so that I could pick up the prescription when I was done with my other appointment, and not have to make another trip back.

Thankfully, when I went back to the pharmacy, they had received the prescription.  Then they had to call my doctor’s office because they read the prescription as twice a week rather than every two weeks.  That would have been really bad!

Not feeling well, and being totally exhausted, were not a good combination, and I feared that one more obstacle in my way might send me over the edge, and that I would stop being nice and agreeable, and demand action. 

Nobody ever said that this journey was going to be easy or convenient. 

But finally, I had Humira.  I felt like I had some prized goods in my possession. 

And considering how much it costs – over $1,700 a month (of which my insurance covers nearly all, as long as I get it filled at a specific specialty pharmacy) – I guess I do.  I feel like I have to guard it with my life.

Getting here was a much longer road than I ever expected. 

I guess I knew that one day, I might have to consider the more aggressive treatments for RA.  And here I am.  I think that less than 24 hours after my first injection, it is too soon to tell the efficacy, but thankfully, I certainly don’t feel any worse. 

The good news is that, to me, the shot was very tolerable.  It wasn’t the most comfortable thing in the world, but it wasn’t the fire and brimstone that I made it out to be.  I did not go nuclear on my thigh.  I was very nervous, especially since so many of the stories online sounded awful.  But I’m not judging.  I believe that people feel what they feel.  But it makes me realize that I shouldn’t pour over the Internet for these things, because it only sought to scare me.

And my boyfriend was with me.   I’m not sure which one of us was more nervous, but he was a real trouper, getting knee deep in my health stuff so early on in our relationship.

I am extremely grateful.

And I was glad that my reaction was one of, oh, I worried for nothing, that wasn’t so bad; instead of, wow, it was worse than people made it out to be.

I will say that I find it ironic that you have to be rather dexterous to pinch the skin with one hand and push the button to inject with the other, since most of us with RA struggle with dexterity.  But I do think, that since you have to alternate sites, it seems to me like it will be easier to go from thigh to thigh than it is with a traditional syringe.

I am glad that when I see my rheum in a little less than a month, I will be able to say that I have had several doses of Humira.  I was worried that I would have to go, tail between my legs, saying that I just couldn’t handle doing the injection.

But as experience has taught me, I would rather deal with 30 seconds of pain than the unending pain that lupus and RA have caused me over the last few years.  You can’t really put a price on feeling well and being functional, which I have not felt since I stopped taking MTX.

And once again, I am grateful to the chronic illness blogging community that has rallied around me during this time of stress and uncertainty as far as my health is concerned. 


  1. Woohooo! I am doing the Humira dance for you! You did it! You did it! Now it needs to do it for you :-)

  2. Leslie,

    I am glad you finally got the Humara and that so far it isn't making anything worse. I certainly hope it begins to help and you get some relief.

    I haven't been in touch for a long time because I am very ill myself and on top of that I was put on too high a dose of steroids for too long and am now Cushnoid on top of all my own medical problems. I am losing all my hair, can't get out of bed and have weakness and pain that are intolerable.

    I am praying that you find some relief and when I am better I will be in touch more. Be assured that you always remain In my houghts and prayers, even when you don't hear from me for long periods of time!

  3. I too use Humira. I'm on my 3rd or 4th injection now and not really having any major problems. Granted I don't have lupus I have fibro and psoriatic arthritis, I have been having a little problem w my arthritis but not much luckily. Give my Humira in my stomach bc I have to give myself B12 shots in the thighs every week and couldn't doing Humira there too, so I do the Humira in my stomach and don't feel anything beyond the initial needle prick. I'm glad it seems to be going well for you :)

  4. GREAT JOB, Leslie! You have once again proven you could accomplish something you never thought you'd be able to. Continued success with the Humira ... & looking forward to future posts about how well it works for you (& about the new boyfriend!) :)

  5. Whew... sounds like quite the ordeal getting the Humira, but I'm glad it worked out in the end! Glad to hear the injection was tolerable. I hope you begin to feel a difference soon!

  6. Brave girl! They gave me heparin shots once, and I couldn't give myself a shot. I almost fainted so my roommate had to do it! I'm also happy to hear you have a new boyfriend! Hoping you'll have many blessings to come!

  7. That is definitely the more matured way of counselling yourself that few seconds of pain can rid you of a lot of more pain.And I am sure things will improve with medication and care.

  8. Thanks, everyone, for your thoughts and encouragement. It really helps to know that I am not alone on this journey. I look forward to sharing more with you about my experiences with Humira...and...oh yeah...the new boyfriend! ;)

    And Maureen, it is so good to hear from you again!

  9. This post really hit home for me. I'm not on Humira, but I am on Enbrel. I remember the insurance run-around (I stopped by my pharmacy about five times before it was filled - luckily it's very close to my house!. And I definitely remember feeling excited, like I'd "won" the Enbrel lottery getting it for only $30 per month.

    Congrats on getting it and best of luck on the treatment! And thank you for your blog!

  10. I had the same craziness (I think it took like 6-weeks) to get my Humira. They fill it somewhere far away and then overnight it to me. I can setup a delivery time though - anything that works. So that's nice.

    I'm glad the pen itself wasn't too bad - I feel the same way. It is just worth it. Now, I've taken 3 doses (every 2 weeks) and I'm a bit worried because it is working somewhat, but not 100%. I'd like to know how you do with the drug and how long it takes. I've read that it can take up to 3-months, so I'm trying to have some patience.

  11. Oh, and I wanted to also mention that Cymzia, which I haven't tried because insurance nixed it, worked with Oxo (Good Grip) to create an applicator that is easy to use with inflamed arthritic hands.

  12. Hi! I just found your blog. I'm Finnish and fighting against Rheumatoid arthritis too. I know that scary feeling when you're pushing that button to inject the medicate. I've been sick for 4 years now and honestly I'm sick off of it already. That stress and uncertainty, I hate it too.

    Stay strong. Thank you for amazing blog! :)