Dalmatian Days

Despite those wonderful television commercials showing people dancing and climbing mountains, biologics don’t always have such wonderful results.  It appears that my third biologic is failing.  I have not failed treatment; it is the medication that doesn’t work.

With Enbrel, I felt great.  The day before I was due for a shot, I could tell it was wearing off, but I still felt pretty good.  Unfortunately, it gradually became less effective and my doctor decided to try a different biologic.  Not one to object to feeling better, I thought it sounded like a good idea.

Humira never worked for me, though.  Never.  I really wished I’d stuck with Enbrel and asked if I could return to it.

Nothing doing.  We moved to a third biologic.  Cimzia has definitely been better than Humira, but not lived up to the high expectations I had due to the Enbrel.  I improve dramatically with every injection, but the med gradually wears off.  Lately I haven’t been getting as much benefit as I used to, and am feeling pretty crummy before it’s time for the next shot.

Of course I’ve also been tapering off prednisone, so maybe the Cimzia was never as beneficial as it seemed.

The red hot swelling so characteristic of RA hasn’t made an appearance in a long time, but my connective tissues are a different story.  Before all this started I never would have believed that someone could have tendonitis or bursitis simultaneously in so many places.

Did you ever watch the movie 101 Dalmatians?  There’s one part where one of the puppies whines, “My nose is cold, and my ears is cold, and my tail is cold, and I’m hungry.”  In the movie, it’s cute.  If I were to whine, it wouldn’t be cute, but there are days I call “dalmatian days,” where I just want to join that little puppy in whimpering, “My hands ache, and my feet ache, and my wrists hurt, and my spine hurts, and I have tendonitis in my shoulders, elbows, thumbs, knees, and Achilles tendons; I have bursitis in my hips AND did you know you can get bursitis so that it hurts to sit down, too?!”

Dalmatian days.  I seriously considered buying a cane Monday.  It didn’t happen – mainly because that would have involved climbing stairs (difficult) to get my money, then back downstairs again (ouch), hobbling to the car (no), and making my way across a large parking lot and into a store (not a chance).  Instead, I sat and played games with my kids. Cribbage, Yahtzee, and Farkle are fun ways to reinforce kids arithmetic skills and take mom’s mind off other things.

I can’t play games all the time, though.  What I would like to do is return to Enbrel.  Even if it doesn’t work as well as when I first started it, it might work better than Humira or Cimzia.  If it didn’t, at least then I’d know.  If this were all cash-only, no prescriptions or insurance involved, that’s what I’d do.  My doctor won’t let me return to Enbrel, though.  She says the next step is moving away from the TNF inhibitors and switching to an infusion.  I don’t want to do that.  Cost is one factor, but not the main one.  It’s fear.  The idea of an infusion scares me spitless.

My plan is to pull out all my old exercise sheets from my physical therapist and resume those exercises.  That should help with the hips, shoulders, and Achilles tendons, and get me feeling enough better that I can walk through my kitchen without people asking, “What did you do?”  I’m then (in theory) going to come up with an exercise routine.  One that works for me, not one of those body-builder routines, nor one of those in-training-to-run-a-marathon routines.  I just need a basic attempt-to-be-reasonably-healthy exercise routine.  After that, I’ll evaluate my progress and figure out the next step.  And I really hope the next step isn’t spending any days in an infusion center.

Wishing you no dalmatian days.

Compliance Follow-Up

Today I learned something new.  In the discussion of my most recent cross-post on KevinMD, Dr. Steven Reznick says:

In most patient – physician visits I have seen in my 30 plus years of practice  the physician identifies a problem and tries to explain it to the patient in lay terms. The physician then outlines the choices and options for treatment and will say which one he/she prefers. The risks and benefits of the choice are discussed. In most cases the physician and or staff access the patients drug plan to make sure what is being prescribed is covered by the patients insurance. Most practitioners ask the patient if they have any questions or concerns before the visit is complete.  Once the patient leaves without raising a question or concern , as the physician you assume the patient is going to follow the mutually agreed upon care plan. You also assume that if there is a problem with the plan after the patient leaves, they will call you, stop back in the office or set up another visit to address their concerns. You do not expect the patient to not fill the prescription or not take it and then show up at a follow-up appointment to check on the efficacy of the treatment only to find out they have not taken the medication at all. It clearly is a two way street communication between physician and patient. If a patient believes a medication is causing an adverse effect or if they want to stop the medication for other reasons it is reasonable to assume that the patient will contact the prescribing physician to discuss the options and choices including how to safely eliminate the medicine .  These options are explained at most visits, they are written in practice instruction books and welcome to the office manuals, they are placed on practice web sites… 

I honestly have never heard this.  In fact, I think I’ve heard the opposite.  Don’t call!  Two different times I have called about a prescription that wasn’t working for me:

Growing up, it was hammered into me that you always finish a prescription.  Always.  That lesson stuck with me.  In college once when I got sick enough that I thought I should see a doctor, I went to the student health clinic.  A prescription was written.  Always finish the prescription became a problem because when I took the first dose, my neck turned red and my throat swelled up, making it difficult to breathe.  Benadryl and time helped.  Thinking perhaps the problem was something other than the medicine, I took a second dose later.  Oops.  Obviously, this was a prescription I wouldn’t be able to finish.  I phoned the clinic and the doctor said, as if I was an idiot, “Well, quit taking it then!”  My follow-up question was whether I needed a different prescription to replace it, or if she needed to see me again. The doctor told me that wouldn’t be necessary.  I was stunned.  Why had she written a prescription if I didn’t need one?  It really sounded like I should have just quit taking it on my own and not bothered her.

The other time I had a severe reaction to a medication, I called the doctor’s office.  The receptionist didn’t want to hear about it and gave me the nurse’s voice-mail.  She didn’t call back.  I called again just before the office closed and left another message, miffed that I was being ignored but resigned to not getting a call until the next day.  Still no call.  The third day I called again.  The receptionist said that my call should have been returned (ya’ think?!), and she put me through to the nurse’s voice-mail once again.  Finally, much later, the nurse phoned and said that if I wouldn’t take the medicine that caused vertigo & vomiting, then they’d write a prescription for the medicine that makes my throat swell; those were my choices.  I chose to go without.  Six weeks later, at my follow-up appointment, I specifically asked, “My understanding from the medication insert is that I’m supposed to call you if I experience an adverse reaction to the medicine, but you wouldn’t take my call.  Under what circumstances should I phone you between appointments?”  The response was, “Never!  There would never be any reason for you to call between appointments.”

Twice I’ve called about prescriptions.  Twice I’ve been blown off.  Given this history, it is not reasonable to assume that I’ll be making any attempt to phone a doctor about a prescription.  Unless specifically instructed otherwise, my inclination would be to figure things out on my own and take it up with the doctor at my next appointment.

Dr. Reznick’s comment makes me think that perhaps I should phone my podiatrist about those ridiculous Flector patches he prescribed.  That prescription was Plan B; after a trip to the pharmacy, I made the choice to go with Plan A instead.  I really thought it would be okay to just mention that at my next follow-up appointment.  Now I wonder.

Remembering to Take Pills

It can be a challenge to remember to always take prescribed medicines.  When I first was given one prescription, it was no problem.  Adding a second was still okay, but adding a third made it a little hard to remember which pills I’d taken.

My solution was two-fold.  For my prescriptions, I’d take all three bottles down from the cupboard and set the bottles in front of me.  I’d open one bottle, take that medicine, then move the bottle off to the left.  Next I’d open the second bottle, take that medicine, and move the second bottle off to the left.  Finally, I’d open the third bottle, take the final medicine, and put everything back in the cupboard.  It worked great for the prescriptions, but I was so tired of opening bottles and swallowing pills that the other part of my solution was to stop all supplements (vitamin C, calcium…)

When these three medicines were to be taken only with morning and evening meals, the dancing-bottles system worked reasonably well.  When a mid-day dose was added, things got a bit more complicated.  I very quickly realized that I needed a way to confirm that I’d taken every dose.  With a family history of osteoporosis, I also suspected that I needed a way to get calcium back into the mix of pills I was swallowing.

It was simple enough to make a little chart and print a list of everything I needed to take.  I’d tape the list to my kitchen cupboard where my meds were stored, and use a highlighter to mark off every dose as I took it.  Problem solved.

After a while, though, opening all those bottles every day got tedious.  About that time, our superhero, RA Guy, did a post about a pill sorter he was using, and I got one to try.  It was easy to see why he liked his – I sure liked mine.  Instead of opening all those bottles daily, I only needed to open them once a week.  When I filled it the fourth week, I knew it was time to visit my friendly pharmacist again.

Nothing lasts forever, though.  Unfortunately, some of the pill compartments have started to pop open, spilling my pills all over the counter (or onto the floor, and a few times even down the sink).  If I had fewer or smaller pills, I’d buy another box like what’s wearing out.  I suspect, thought, that I need something with larger compartments.

Looking at replacement options,  I found a fairly elaborate one (pictured at right) and contacted the company selling it.  This has the features I like about my current pill-boxes (four separate compartments per day, every day is individually removable), but holds an entire month’s worth of medicine and has slightly larger compartments than what I currently have.  It also includes an alarm; if (like me) you’re sometimes tempted to skip lunch, that alarm calls you to come eat so you can take your prescriptions.  The down-side is that it takes a whole lot more space than the flat little boxes I use now.  I’ve found a local supplier, so even got to see the thing 3D.  Price is what’s holding me back right now (well, price and trying to figure out where I’d have space to put the thing – it’s not exactly inconspicuous).

Whether it’s a single-compartment box at the corner drug-store, a more elaborate box like I’m using now, or the mammoth one I’m considering next, I highly recommend a pill-box to help keep track of multiple medications.

Disclosure:  I have not receive any compensation for expressing this opinion – however, I’d be willing to accept a gift of one of these awesome looking pill boxes and giving it a workout so that I could write a thorough review after putting it through its paces.

*Sorry, don’t recall who sent me a link to the fancy pill organizer. I’d give credit if I knew.  Feel free to speak up in the comments.