Ch-ch-ch-Changes

For nearly a year now, I’ve been injecting Enbrel weekly.  It was pretty scary in the beginning, but I like Enbrel.  I like how it makes me feel so much better.  I like how easy it is to use.  I like the once-a-week schedule so that it’s easy to remember and incorporate into a routine.  I like that it works.

My inflammatory markers look good.  Ten years ago, my response to the meds would be considered a success story.  Now, my rheumatologist tells me, the standards are higher.  She’s treating me, not my lab reports, and thinks I might do better on Humira.  I shouldn’t have new bursitis, I shouldn’t have enthesitis, my feet shouldn’t hurt all the time if these meds were doing their job 100%.  So, effective immediately, I’ve moved on to my second biologic.

I just got off the phone from trying to activate my new Humira card.  All the literature – yes, I actually read this stuff – says that the card is good for twelve months.

  • “This card is valid for 12 months from the date of first use, after which the patient has the option to reenroll (sic) in the program.”
  • “The program pays:  Months 1-12: Up to $500 each month”
  • “Easy to renew after 12 months”

After providing all my information, the voice on the other end of the phone concluded the conversation by saying that this card is good for twelve fills.

“No, you mean twelve months, right?  That’s what your literature says.” 

We went back and forth, her insisting that it’s only good for twelve fills, and me wondering why they won’t cover that last fill of the year when their written materials say that they’ll help out for a full twelve months.

A Humira prescription gets me a box of two injections to be given every-other-week, which should make one box last four weeks.  Divide fifty-two weeks of the year by four weeks per box, and it’s obvious that it takes thirteen fills to get through a year.  This is basic math that my eight-year-old understands; it should not be an impossible concept for an adult to grasp.

Some people will point out that I should be grateful that they’re picking up a portion of the cost.  And I am.  Really.  Extremely grateful.  I just happen to think it’s deceitful to tell people that the card is good for a year if it isn’t. (/rant)

I got my first Humira injection today.  I now have a headache – my first in over a year.  I hope that’s bad coincidental timing, and not a problem that I’ll have with the new med.  Since I’d heard that Humira stings much more than Enbrel, I was a bit concerned.  That turned out not to be true – at least for me.  It was about the same.  With any luck, that will continue.

And now, given that it’s only a week until Christmas, I should probably start my Christmas shopping.
Or baking.  Or packing for our trip.
Have a Merry Christmas!

Nobody Knows

This afternoon I received a message on Facebook:

Someone has proposed that us, GIRLS, do something special in Facebook to help gain consciousness of Breast Cancer. It’s so easy that I’d like you to join us to make it spread! … blah blah blah

What do you drink?  blah blah blah

I misread “What do you drink?” as “What do you think?” and didn’t hold back in my reply:

What do I think? I think there is already a ton of awareness about breast cancer.  People already know what cancer is.  They are already aware of the numerous body parts that can be attacked.  Even if they don’t know the difference between in-situ or metastatic cancer, they have a general idea of what cancer is and what’s involved in fighting it.

On the other hand, I’ve posted numerous times about raising awareness of autoimmune diseases – something most people are clueless about.  I have not gotten any support at all.  Do you click “like” on those posts?  Do you re-post so that the people on your friends list have the opportunity to learn about this group of horrible diseases for which there is no cure and no known cause?  Did you play in the IAAM scavenger hunt to raise awareness last weekend, as I requested everyone do?  Did you let others know about the awareness weekend so they could play or have the opportunity?  Do you even know what autoimmune diseases are?

There are horrible diseases deserving of a lot more publicity than something that everyone already knows about.

So, for those fed up with the slacktivist’s “I’m a beer/red wine/champagne/etc woman” FB status, any ideas on how we can generate more publicity for autoimmune diseases on Facebook (or other venues)?

Grumpy

When methotrexate was first prescribed to me, I was worried about getting sick; I’d read numerous accounts of people who got one infection after another, and didn’t look forward to joining their ranks.

It turned out that my fears were unfounded.  I’ve taken methotrexate for a full year and haven’t been sick once.  Four of my kids have been sick at various time during the past year, but I haven’t had so much as the sniffles.  If you’re looking for information on mtx and illness, I’d say, “Don’t borrow trouble.  Chances are you’ll be fine.  At least give it a try.”

I haven’t had any trouble for an entire year.  Until now.  Last week I started coughing, a horrible, dry cough.  It’s gotten worse in the last two days, and it feels like I should be coughing stuff up, but that’s not happening.  I’ve been coughing so hard today that I’m going to need diapers if this keeps up.  My chest hurts like it did a few years ago when I had pneumonia.

Fortunately there’s no accompanying congestion, so at least I can breathe.  Unfortunately, all that coughing has given me a sore throat, and the sore throat has made me sound pretty hoarse. 

Adding insult to injury, the other day I was cooking and suddenly, out of the blue, it felt like someone stabbed me just below my ribcage, then jerked the knife straight downward.  I stopped right in my tracks, it hurt so bad.  And then it went away.  Well, not exactly away, but reduced to a dull ache.  It made me wonder if I have to deal with kidney stones on top of everything else.  My back’s now hurting something fierce, too.  I’ve increased my water intake to see if that makes a difference.

And this evening I’ve started running a fever.  According to the warnings and precautions on a number of my medications, that’s another reason to phone the doctor.  Cough = phone the doctor; sore throat = phone the doctor; hoarseness = phone the doctor; fever = phone the doctor.

I don’t want to phone the doctor.  That always turns into, “You should come in to be seen.”  Before all this, if I got a sore throat, I’d drink hot lemonade, eat chicken soup, and become a hermit until I felt well again.  Now apparently I have to call the doctor about every little thing.

I just want to crawl into bed and be left alone until I’m well again.  So I’m grumpy.  But it turns out that “mood changes” are also listed on my prescriptions as a reason to contact the doctor.