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. 

Sunday, April 15, 2012

Who Stole My Spoons?

I’m feeling pretty dejected these days.  I was hoping that the MTX-Humira transition would be faster and more seamless than it has been.

In my head, I know that these things always take longer, but in my heart, I want to get back to feeling good as soon as possible.

And right now, I’m not feeling that great.  I feel like I am operating at a deficit.  The minute I wake up, I’m already two steps behind, and all I want to do is go back to bed. 

I went to a formal with my boyfriend. (Yes, that’s right.  There is a new man in my life.  But more about that another time…)

I had one drink – what the hell since I’m not on MTX anymore – and the next day, I felt like I might need a week to recover.  It wasn’t a crazy time.  We stayed at the party for about three hours.  We danced and we schmoozed.  Typical 20-something night. Probably even a tame 20-something night by most accounts.

And yet, I feel like I ran a marathon.  It’s like when 40- and 50-somethings act like they are 20 years old, and then regret it because  they can’t party like they used to.

That’s how I feel, but I’m not really sure I ever really got the chance to party in the first place.

And that makes me sad.      

Nearly a week ago, I had TB test.  This is required before they will let you start Humira.  Well, I was told to have it done on a Thursday.  But when I went to the lab, they said that wouldn’t be possible because it (the skin test) would need to be read, and couldn’t be done over the weekend.  So I waited until last Monday, and went to get it done.  The lab told me that they don’t do skin tests, but they looked, and my doctor had ordered a TB blood test (which I didn’t even know existed).

So here I am, nearly a week later, still waiting for the results, to find out whether we can move forward with the Humira or not.  They won’t fill the prescription until they get the test results (which they should have gotten in about 24 hours).  So I’ll be putting a call into my doctor’s office tomorrow, to see what’s going on.   

And I’m exhausted.  Completely.  Utterly.  I’m exhausted because of the run around that you get, when you get five different answers from five different people, and I’m exhausted because lupus and RA have settled back into the scene.

And I’m frustrated that I can’t be the girlfriend I want to be to my boyfriend. 

But oh, the fatigue.  I did not miss you one bit.  And how  you are throwing me for a loop, the longer you linger with me.

I had forgotten about the whole fatigue thing. 

I want to feel good.  I want to feel like myself again.  And I don’t right now.  My head is heavy and my brain is cloudy.  And I feel like I could sleep for 100 hours and it still wouldn’t be enough.

I don’t like this non-medication slide.  And I wish my doctor would understand this and move  a bit more quickly.  I have to rely on him because I am moving pretty slowly these days. 

I didn’t partake in the month’s Patients For A Moment because I have to admit, I’m feeling pretty much like all I am is illness right now.

I feel like this post isn’t even that coherent, and I’m not sure how I am going to write a coherent dissertation if I am feeling this way. 

I don’t feel good.  And I desperately want to feel good.

Oh how I wish I could have stayed on MTX. 

But since I can’t, I can only hope I can get on Humira as soon as possible, and that it works.

I want to be functional again.  Maybe I won’t be fully functional, but at least I’ll be mostly functional…

Thursday, April 5, 2012

Bring Out The Big Guns: Humira, Here I Come

When it comes to health stuff, there is never a good time for things to go wrong.

After my latest round of blood work, my liver enzymes are back up, and my white blood cell count is down, again, so my rheumatologist is recommending I stop taking Methotrexate for good, and try Humira.

(At least I don’t have to worry about the MTX shortage anymore…)

Medication changes make me really nervous, and knowing that it will take several months to kick in, I worry about the period of not feeling good that is likely to ensue.  I kind of thought things were getting to a more stable place, but I guess not. 

It’s a bummer because MTX worked so well in helping my arthritis symptoms, but ultimately, the things it was doing in the background were not so good.

And I guess we’ve done this dance with MTX long enough.  It was the same when I was on the oral form; off, on, up, down.  The injectable form definitely had less noticeable side effects, but seemed to not work for my overall health.  

So my rheum told me to do some homework on Humira, and let him know if/when I want to start it.  Right now, I can’t be on nothing, because I won’t be able to function at a very high level.  And I guess I have to be willing to try everything once.  I can’t rule it out until I’ve tried it, although many of the things I’ve read about Humira are just downright scary. 

Humira is a biologic, unlike MTX, which is a DMARD (Disease Modifying Anti-Rheumatic Drug).  Biologics actually change your DNA.  That’s pretty scary, right? 

And people say the injection hurts like all get out. 

I feel like I had just gotten used to the MTX injections.  I had figured out a way to do the shots myself, I had come to terms with this once weekly routine, and I had made peace with the fact that this ritual was helping, rather than hurting, me.

And now I start at the beginning again.  With a new medication, and all that comes with it.

While I’ve heard about these medications from TV commercials, and patient bloggers who are on them, I haven’t paid that close attention to them.  I was hoping that things wouldn’t have to get to this point, to be honest.  But clearly MTX is neither a temporary nor permanent solution for me.

And I think we’ve followed the natural progression of things.  First I was only on Prednisone, and then we added in Plaquenil.  Then we tried CellCept.  Then we got rid of CellCept, and tried oral MTX.  Then we got rid of Plaquenil and added Quinacrine.  And we moved from oral MTX to injectable MTX.  And I was hoping that the Flexeril-MTX-Prednisone as needed-Quinacrine regimen would work.

But no such luck.  So here I am, finding myself at the door to the biologics, which are really my only hope at this point.

I hate to be in a situation where I feel like meds are my only hope.  I wish it weren’t that way.  I wish I didn’t have to say that in order to be functional, I need the meds. 

And I wish that these decisions were easier.  I have gone back and forth about this, and I’m still thinking that I might chicken out.  But what will that do?  Only prolong the agony? 

I need to find a medication regimen that works, and that doesn’t try to kill me in the process…      

I hate this game, but I have to be strong, put up a fight, and win.