Side Effects

Let me be honest: I find side effects totally insulting.

Most of us with chronic illnesses take a whole lot of medications.  Most of those medications come with a long list of side effects.  As patients, we are forced to decide (more often than most people) whether the risk is worth the reward.  We must choose whether possible liver problems are worth relief from joint pain and swelling, whether mood swings are worth relief from inflammation.  Constant choices.  It’s exhausting.

I have learned to read ALL of the patient information on my medications.  I google them all and check multiple websites.  I make sure I know the rare side effects as well as the common ones.  I check for medication interactions before I take anything new.  Oh sure, I believe my doctor is smart and knows what the best treatment is for my RA and fibro, but I also believe mistakes happen.  I believe that my health care is ultimately my responsibility.  So I research, double check, triple check.  That too is exhausting.

But neither of those is why I find side effects insulting.  I hurt all the time.  I am tired beyond tired.  I am weak.  I get depressed.  So I take medication to help with those things.  Sometimes the medications help a lot, sometimes not at all.  But…all of them come with great big side effects that I must learn to live with.

So, on top of being in pain, being tired and weak, having depression, I now also: have difficulty sleeping (side effect of Welburtrin AND prednisone), have mood swings (prednisone), am a bit foggy brained for part of the day (Lyrica), have fish burps (fish oil), have occasional stomach issues (naproxen), and most fun of all, have a day or two of horrible fatigue and nausea (Methotrexate).

Those are my regular side effects from my medications.  What about the possible long term ones- hair loss, bone depletion, liver failure, kidney problems, ulcers, cancer.  Fun!

Is all that worth it?  Yes, probably.  I am not sure how I would feel without all the chemicals.  Probably horribly depressed and unable to actually move.  So yeah, the side effects are better than that life.  But here’s the thing I wonder, the thing that makes me get upset and insulted:

if scientists can figure out how to make these meds, can cure cancer, can find ways to travel to space, can do all the amazing things they can do, why in the hell can’t they make medications that don’t make us so miserable?  I know I’m asking a lot.  I really do.   But wow, those of us who have to take so many medications, so many really strong medications, have too many side effects.  It is TOO much, and I think scientists and/or drug companies should start thinking about chronic illness and chronic care in a different way.  Don’t make a pill that trades joint pain for cancer!

Ok.  Rant over.  As you might have guessed today is my post-MTX day, aka day from hell.  Day of fatigue, nausea and headaches, despite doubling my dose of folic acid.  But…I will stick with it.  Because if MTX works (in another two months, we may know!), it will likely be worth one day of hell if it gets me six days of functional.

And now I am going to bed.


MTX: Week Two and Other Tid-Bits

Day after second dose of Methotrexate.  Again horrible fatigue, that I am just starting to almost see the end of.  Only other thing of note is the horrible metallic taste in my mouth.  Which definitely is better than nausea.  The only thing particularly annoying about the metal taste, is that combined with my usual dry mouth, I pretty much want to be drinking water constantly.  But whatever. Could be worse.

While I was in bed this morning (because I couldn’t be anywhere else), I started How to Be Sick by Toni Bernhard (which I heard about on  So far I really like it.  I’m not particularly spiritual, so some of the Buddhism stuff is not my cup of tea, but at the same time, alot of what she says really resonates.  And so, far, all of her suggested practices can be easily used by anyone, regardless of their spiritual beliefs.  I’ll post an actual review when I finish it.

In other news (that is, for once, not at all about my being sick), my oldest kid is going to prom this weekend.  CRAZY!  His school is small, so prom is open to all grades, which makes it slightly less odd to have a child old enough to go to prom.  It’s more like a super fancy dance, with us dropping them off and picking them up, etc.  But still.  I’ll be watching him dress up in a tux on Saturday and trying not to cry!

And that’s all I’ve got for today.  Hands hurt too much to attempt anything profound.  Very glad, though, to have gotten through dose 2 without any serious badness.

Wishing you all a great end  to your week!

The Fill-In Pharmacist

All my worries about the new doctor yesterday were totally unfounded.  Visit was short, totally productive and without any problems at all.

But….I was reminded yesterday: new pharmacists can be as bad as new doctors.

Yesterday I got the official ok to start Methotrexate, so dr’s office called it in to local pharmacy, along with folic acid.  I’ll skip the part of the story with missing scripts and having to get dr’s office involved a second time.  That part is minor compared to the rest.

My normal pharmacist is on vacation.  I love her.  She knows me by name, remembers my meds, offers great advice.  Her fill in- total opposite.

I arrive to pick up the MTX, and it isn’t ready yet.  So I wait a few minutes.  Finally, clerk brings it over and starts to ring me up.

Clerk: You’ve taken this before, right?

Me: No, not at all.

Clerk: Calls Fill-in Pharmacist over

Fill In Pharmacist: Your doctor gave you instructions for this right?

Me: I think so

Fill In: Well, the instructions are really specific.  Let me read them to you.

Me: Ok

Fill In: Ok. (reads from label) “Take 4 tablets once a week”

Me: Right

Fill In: Well, that’s pretty much it.  Have a good day.

Me: Stands in stunned silence

I have gotten better medication counseling for refill scripts.  I have gotten better medication counseling for pretty much every other medication I have ever taken.  And this drug is not exactly a light weight.  We aren’t talking about a vitamin here, or extra strength tylenol.

MTX is a chemo drug given in low doses for RA.  The product info sheet was written in teeny tiny font in order to fit all the info on there (one piece of info included that patients should wear id bracelets- I wonder if this is true).

I am so angry at this pharmacist.  Sure, I know about this medication.  Obviously, I know more than he does.  I know to call the doctor if m side effects are too bad (and they very well may be); I know to call the doctor if I get an infection because I can’t have one while on MTX; I know I have to go in for regular labs to monitor my liver function while I take this med.  These are things pharmacist should be telling patients.  It is his job not to just hand out pills, but to make sure they are taken properly.  Had I not done my research and been as knowledgeable as I am, I would think the only important info is that I take four pills once a week.  I feel so bad for all the people who go into pick up meds without doing their own research- how many people has he screwed over with this kind of approach?

That is unacceptable.

Needless to say, I will be lodging a complaint when my normal pharmacist returns.

And on a side note: I start MTX tonight.  Pretty freaked out, to be honest. But, we’ll see…