Tuesday, December 27, 2011

Humira Update and the Sed Rate Saga

Well, I am now into my third week of being on Humira.  You can read about my switch from Enbrel to Humira to treat my rheumatoid arthritis here.  And, if you’re not too squeamish, you can even see pictures of my first Humira injection here.  I did my first injection on December 9th, and I opted to do it in my leg, because that was always easiest for me when I was on Enbrel.  I would not say my first Humira injection was a great experience, though.  While I appreciate the pen from the standpoint that I don’t have to see a needle, it felt very “lurchy” for lack of a better word, and seemed to just pump the medicine into me rather than slowly inject.  After hearing from a lot of other patients, I decided to try injection number two in the stomach.  It sounds weird, but everybody promised me that it would be better. 
Guess what: they were right.  No, I am NOT going to show you pictures of that injection (perhaps I’m a little self-conscious about showing myself squeezing together belly fat, okay).  I’m not sure if it was just that it’s easier in the stomach or if this pen was just better than the first, but it did not lurch like the first one, nor did it hurt quite so much.  The strange thing about this injection was that it actually stung more afterwards than while the medicine was going in.  At any rate, I think I’m going to go for the stomach again for injection number three next week.  I’ve also heard a lot of other patients say that 1) The Humira pen is one of (if not THE) worst auto-injectors out there, and 2) pre-filled syringes hurt way less than the pen, and it’s nice because you can control the flow.  I’m going to give the pen a few more goes, and if I’m not comfortable with it, I’ll be asking for a switch to syringes.

Now that we have that out of the way, let’s talk about efficacy.  Is Humira working?  I don’t know.  I believe it’s working to some degree, because I don’t feel any worse than I did before.  However, I really don’t feel any better than I did a few weeks ago, either.  I do feel better than I did a few months ago – but that just indicates to me that I was on the upswing coming off of a flare when I started Humira.  Perhaps not the best time to get a good read on a new medicine.  Oh well – time will tell, I suppose.  Labs might tell, too.  Although I felt a little better by the time I saw my doctor (after I got my latest blood work done), I am sure it still would have revealed elevated inflammation.  I have to do my blood work again in the beginning of January.  I think I will wait until after shot number three for that, to give it a little more time.  We will see what that reveals. 

An interesting side note: I did finally request my medical records from my rheumatologist last week and they arrived on Friday.  After sifting through them, I discovered that my Sed Rate (measures inflammation) from my last labs (41) was higher than it has ever been since I started seeing my current rheumatologist.  When I started seeing him, my Sed Rate was 34.  The last time I had a bit of a flare and he wanted to change around my treatment, my Sed Rate was 31. 

I would like to compare for you my current condition (or, condition during my last labs) versus my condition when I first started seeing this doctor in 2007.  Lately I have been experiencing symptoms in more joints than normal.  Normal for me over the past few years is mostly hands, occasionally feet, and rarely knees.  Lately, I’ve had pain, stiffness and/or inflammation in hands, wrists, elbows, knees, ankles and feet.  I had a few “bad” days this fall, with some sharp, constant pain in my hands and wrists (see my blog post about painscales), as well as some days with some bad intermittent pain in my knees when they stayed in one position too long (they’d kind of lock up and exhibit a painful click upon stretching them).  But, on the whole, I’ve been feeling okay.  I’ve even felt better in the past month or so – with most of the symptoms out of my knees and elbows, and less pain in my feet.  So, when my doctor’s office called after getting my last lab results and asked if I needed a prednisone burst, I told them no. 

Contrast that with 2007 when I first met my rheumatologist and had my first encounter with prednisone (cue the angelic music).  My knees were so painful and weak that I could barely stand still for more than a few seconds.  I was dying for some relief.  But, wait, my Sed Rate was only a 34, compared with 41?  What’s up with that?  I have an idea.  While my knee flare of 2007 was bad, part of that is likely due to the fact that I was putting weight and pressure on my knees every day, throughout the day.  If I wanted to walk (and I did), I would be constantly using my flaring joints and they just couldn’t take the pressure of my weight -- despite my slight frame.  However, the rest of me felt pretty good.  Right now, I have more joints showing disease activity, which likely combines to show a greater overall inflammation in my body.  My knees are also not my worst joints right now; my wrists are.  But I don’t have to put weight on my wrists constantly in order to get through my day.  If I did, I think I’d be asking someone to pass the prednisone about now!

So, that’s my update and my theory about where I was and where I am.  I feel good about having my own copy of my medical records, and I’m going to try to be more diligent about doing my part in my disease management.

3 comments:

  1. Dana, you missed your calling (M.D. degree)...

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  2. Ha, I have too many callings. So, I had to choose the career path that would give me the most variety! Flattered that you think I could've been an MD, though :)

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  3. I'm so glad I found you. :) I still have much to learn. I, too, would like to think I'm okay. I guess it's called coping. It's too scary thinking the opposite. Thank you so much for sharing.

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