Sunday, April 10, 2011

Second Actemra Infusion

So I had my second Actemra (tocilizumab) infusion, on Wednesday and NO BRUISE!

I took everyone's advice and really put pressure on the spot for like 5 minutes or more after the needle was removed and held my arm up in the air, and it worked!!!

At least, I'm assuming that's what did it, especially since the needle seemed to hurt even more going in this time. Go figure.

Will report back after the next round if it works again.

In the meantime, it seems my hips aren't aching the same way, so I think (said with caution), that the Actemra is starting to work!

And re side effects, I didn't have a headachy feeling quite to the same extent for the two days after the way I did the first time. Could be because this time out, I made sure to drink more during and after the infusion. Who knows?

:) L

Monday, March 28, 2011

Updates and Future Outlook

1. My CRP (C-Reactive Protein) levels are elevated.

My rheumatologist's receptionist called me a couple of weeks back on her orders to ask me a) am I flaring? b) am I sick?

Um, I would say flaring, because I stopped taking Enbrel and hadn't started Actemra till some 3 weeks later and was getting more and more sore. So, yes, I could have told pretty much anyone that my bloodwork would be screwed up.

I told the receptionist that (not exactly those words, that would be rude; I merely said, hey, gap in drug usage, equals sore feet and loose legs, blah, blah...).

A few days later, the receptionist called back to say, "Doctor says, 'Hang in there, and get your bloodwork done again just before your next infusion.'"

Will do! At this point I can't quite tell yet if the Actemra's taking effect. My hips are even aching at times, which is concerning, just because, hey, who wants to be in pain? And if aching gets worse that's pain. But I know it can take time for drugs to work, and there's still lots of time for that to happen.

2. New work is on the horizon.

I will be very busy soon. In addition to the work I'm doing as editor of special issues at House & Home, I'm also going to be the new book editor of Chatelaine magazine for the time being! I am beside myself with excitement – I get to work on something new and a subject matter that I absolutely adore! Unfortunately, that means I won't likely have the time to post very often at all, or even have a chance to visit blogs very often. I will check in as often as I can, but I just wanted to give you all a head's up and not let you think I just dropped off the face of the earth or didn't care any more! I'm still here and will pop by when and as often as I can!

:) L

P.S. Don't forget to look for the new Kitchens & Baths issue of House & Home on newsstands and digitally today, March 28!

Tuesday, March 22, 2011

All Clear on the Cholesterol Front

The cholesterol situation is NOT a crisis, according to my family doctor.

I was puzzled when she said that because my rheumatologist had referred me to her with the request that she send me to a specialist for my cholesterol since the Actemra (tocilizumab) infusions would likely increase my borderline levels.

But to quell my concerns, my family doctor showed my the handy-dandy chart she used to come to her quick conclusion.

Entitled the "10-Year Coronary Disease Risk Assessment," it took into account things like my age, bloodwork results, smoking, diabetic and blood pressure statuses, and added up all the corresponding points, charted a percentage and spat out (OK, not literally, but sounds fun!) a figure that clearly indicated I'm in the low-risk category.

Whew! Ben & Jerry's, here I come! (Just kidding! Or at least somewhat kidding.) My doctor says we'll check my cholesterol again in six months just in case and go from there.

Okey-dokey. I am good with that.

Friday, March 18, 2011

IV Bruise, Part Deux

So the bruise is still there, still totally noticeable and, if anything, more sore now than before – how that is possible, god only knows.

So let's take a moment and do a little calculating.

We're coming up to the two-week mark. If I have a bruise like this each time I get an Actemra (tocilizumab) infusion, ie. once a month, each month, one half of each month, I will have a noticeable bruise on one of my arms.

Therefore, I will be essentially "walking around looking like a junkie*" most of the time.


P.S. A note of thanks to Pony for the junkie* reference. :)

Sunday, March 13, 2011

IV Bruise

Had my Actemra (tocilizumab) infusion on Tuesday, and this is what my arm looked like yesterday.

I'm hoping that it won't look this way every time. When I get my blood work done, sometimes I bruise a little, sometimes not.

I just wanted you all to see this and know that it's not like I was tortured or anything. And it's not like the very nice lady who put in the IV line couldn't find a vein or anything. She got it right off the bat, and there was just a pinch – it's not like she killed me or anything.

I just bruise easily. Always have, really. And now I think more so. My tender, tender skin obviously didn't react well to teeny, weeny, eensy, tiny drops of liquid being ever, ever so slowly infused into it and decided to freak out and get all bruisey as a result.


If this sort of thing keeps up, it's not going to look so pretty come summertime...

Wednesday, March 9, 2011

My First Actemra Infusion

Sorry for not posting sooner, and commenting and everything. I've been finalizing my first special issue of House & Home – Kitchens & Baths, on sale on newsstands March 28! – and have been crazy busy!

I had my first Actemra (tocilizumab) infusion yesterday. (By the way, I have no clue how to even begin to say the generic name of this drug, only the brand name. If you're curious, check out this blog post to find out how drugs get their often freakishly unpronounceable names.)

Leotard kindly offered to come along with me to keep me company. Personally I think she just likes to see me suffer. Lol! Or she has a fascination with medical matters – which, I confess, I also do. Or she's a genuinely good, caring friend. Whatever the case may be, I was happy to have her along. She keeps me laughing and distracted from the matters at hand. Like getting a needle in my wrist and being infused with a drug that was just approved last January and that, as everyone has been warned, has caused one death. Yes, one death.


I knew that going in.

I do my research. I read the obligatory side-effects warnings, and I know what I'm getting into. All the drugs I'm on, for rheumatoid arthritis and migraines, have scary-sounding side effects, and bad things happen. But I'm more likely to get hit by a car crossing the street. Or smack my head falling down in the tub, or slip on ice and also smack my head during the interminable winter we've been having here, quite frankly. And I kinda like to be able to move, you know? So getting the drug was the plan.

I hadn't been at all sure what to expect from the infusion clinic, but it was super comfy. There were about 11 La-Z-Boy–type recliners, each with a pillow on it and curtains that you could draw for privacy. There was even a big-screen TV. Kind of like first class in a plane – or what I imagine first class in a plane would be like, since I've never actually experienced first class!

Leotard and I went to the back of the room, so she could sit beside me, and we made ourselves comfortable.

Then the very kind infusion lady came around and set to work. She weighed me (I have lost yet more weight!!!) and took my blood pressure and temperature. Then she inserted the IV line; aside from a momentary pinch, it wasn't too bad. She set up a saline solution line first, explaining that once the Actemra came over from the pharmacy, she'd hook that up. So there Leotard and I sat, chatting, until the Actemra was hooked up. Then I curled up and closed my eyes, while Leotard played games on her cell phone and read magazines (what a good friend! sticking around even though I was ignoring her!!). In between, my blood pressure and temperature were taken a few times. An hour later, the infusion was done. After that, I had to stick around for another half an hour to make sure I was OK, my blood pressure was taken again, and then I could go.

Done and done!

Now we'll see how the Actemra works for me (my hands and feet have been more "there," if that makes sense, since I stopped taking Enbrel three weeks ago, and my legs have gotten that loose feeling they haven't had in ages), and what my blood-work results are each month going forward.

Keep your fingers crossed!

Tuesday, February 15, 2011

Non-Disclosure and Feet

"My feet are sore."

The words just slipped out at work today.

I didn't mean to say them, but my feet were hurting me – not horribly, but hurting nonetheless – and I just blurted it out without thinking.

"Your feet are hurting?" asked my colleague.

"Oh, they're just bothering me for some reason," I said, or something to that effect, waving it off.

I totally hadn't meant to say anything, I just said it, then had to figure out what to say to cover for myself, so to speak.

Weird to have to do that, to feel you have to do that.

Don't you think?

Friday, February 11, 2011

High Cholesterol

Newly added to the list:

Borderline high cholesterol – so borderline, it might as well be high.

Who is this person I've become?

I do not know her.

Monday, January 31, 2011

Erosions or WTF!


Yes, I've gotten them during this past year.

I had none when I had my ENTIRE body Xrayed in Dec. 2009 when we were trying to figure out what was going on BECAUSE I COULDN'T MOVE IN THE MORNINGS AND GOT STIFF EVERYTIME I SAT STILL FOR MORE THAN A FEW SECONDS.

I got diagnosed super quickly, in Jan. 2010, and was put on a biologic and mass dose of methotrexate right away, but, as it turns out, THAT WASN'T ENOUGH TO STOP THE EROSIONS!!!!!

I'm more sad and disappointed than angry, despite the CAPITAL LETTERS SCREAMING AT YOU.

I think I'm too tired and resigned at this point to be angry and care to that extent, if that makes sense.

I just don't know what to do.

I met a friend and her mother after for coffee (turned into lunch) and was kind of upset, but fine.

Then I got home and started researching stuff online, got sick reading about side effects and lay down on my comfy couch, under my puffy down duvet when a friend I hadn't heard from in a while called. She started to say, "Hi, how are you, don't have much time, just calling about some work," and I promptly started crying.

Nice!!! rhuematologist, who was totally disappointed with the friggin' Xrays, is recommending Actemra.

Pros: an infusion every 4 weeks instead of giving myself a shot every week.
Cons: having to go for an infusion every month instead of being able to give myself a shot in the comfort of my own home.

There's more of course, but, hey, the side effects listed for every drug are scary freaky if you really read the fine print closely enough. (And, no, I'm not being stupid, or entirely facetious, I get the seriousness of things like gastrointestinal perforation just fine, thanks, but it seems to me it's six of one, half a dozen of the other when it comes down to it).

Now I just want to confront the parking dodo who gave me a ticket for parking on the residential city street for longer than an hour. Because I went to my doctor, got bad news, had to go for a chest Xray, then to another doctor to make an appointment for the now once-again-needed TB scratch test, then met a friend to get a hug and have lunch to cheer me up and, no, I didn't make it back to my car in the under 1-hour time frame, during which, apparently, you're supposed to be able to do all your necessary business, which, if I may say so, is practically impossible under the best of circumstances.


P.S. The picture? That's my body spinning out of control...

Monday, January 24, 2011

Dry Eyes

My eyes are dry.

They were dry last winter. Not so bad during the summer.

Dry again now.

I don't have forced air heating, and thank god for that, or it would be horrible. As it is, I take off my contacts as soon as I get home and use eye drops repeatedly throughout the evening and when I wake up in the night. I also use them at work during the day, particularly in the afternoon.

When I asked my rheumatologist about it last year, she said "sicca" something. Or something "sicca."

I know it's dry eyes related to the rheumatoid arthritis diagnosis because I didn't have dry eyes before and they're sooooooo dry. Is it actually Sjögren's Syndrome? Are my other mucous membranes drier than they were before? Could be. Not so dry as my eyes. And even those aren't so dry that I can't wear my contact lenses. Woohoo! I hate wearing my glasses. I have horrible eyesight and they're heavy and have really thick lenses and I can't just buy any old frames, and in winter glasses fog all up when it's cold out and you go inside and, well, I could just go on, but the long and the short of it is, I just hate wearing glasses. So there.

Dry eyes. That's what I have.

Add it to the list.

Sunday, January 16, 2011

Getting Back Into Shape

I've been feeling better over the last two weeks.


My shoulder isn't hurting as much as it has been, and that is such a relief.

It makes a huge difference not to be in so much pain.

And my arm is more mobile.

Also yay!

It occurred to me at some point that if surgeons will eventually anesthetize patients with frozen shoulders to manipulate the joint, I could, in essence, do the same thing myself. Not the anesthetization – obviously! – but the manipulation. So instead of just the Codman's exercises the physiotherapist has had me doing since the beginning of this whole crazy saga, I've been using the weight of my own body while lying down to put pressure on the joint to stretch the adhesions holding it in place.

Warning: not sure if this is medically advisable or not, but it's been working for me. I can now move the arm more than before, which is so fabulous and has made such a difference in my day-to-day life.

I walked up 4 flights of stairs yesterday and went to the gym today since I was feeling so chipper.

Sad, sad state of affairs. The gym that is – or rather my physical state of being.

I lost some 6 pounds during this stupid shoulder affair, I think simply because of the pain. I actually was eating quite a lot of comfort food, in my opinion, just to make myself feel better but must have been eating less overall, and I also lost muscle mass, too, which weighs more than other stuff, because I wasn't working out at all. Moving your body hurts when your shoulder hurts as much as mine did. It's amazing to realize how much your shoulder affects the way your whole body moves as a unit, everything from raising a spoon to your mouth to getting up out of a chair. So I had been moving, really, as little as possible. Not good for a body. Bodies are meant to move.

Which is why I say sad.

Overall, I look pathetic compared to a year ago. Yes, a year ago I was all stiff and sore and felt like crap because of the onset of RA, but my body was, muscle-wise, in much better shape.

So, now, like so many people at the start of a new year, it's back to the drawing board from a fitness perspective.

But at least I feel more up to it.

And that's super wonderful!

Yay, yay, yay!!!!!

Friday, January 7, 2011

2010 in Review


Yeah, not a good year.

24 medical appointments, all specifically related to RA, so that doesn't count any of the multitude for my shoulder, except the two specifically for the injections, since they were with my rheumatologist... :) And doesn't count the usual regular doctor, dentist, eye doctor visits. It's a good thing I'm only working part time right now. Cause this first year of RA has been a part-time job in and of itself.

$24,399.87 in drug costs, all related to RA alone, most of which were covered by insurance, for which I am sooooo grateful.

48 visits to the pharmacy to pick up those RA drugs. Now that I'm on what the insurance company has determined are "maintenance" doses, I won't have to go back so often because they'll let me get more at a time. Yay! Well, at least until my coverage runs out and the government starts picking up the tab. Who knows what their requirements are. I haven't looked into that yet. One step at a time.

On other fronts: a friend with cancer. Friends out of jobs. Not good.

The bright spots: a wonderful new client, with lovely new people and interesting new challenges that are stretching me in good ways and making me feel really positive about things and life in general! And true friends, people who ask me how I'm doing and actually mean it, people who check up on me, who take the time to see how I am and who just hang out. And especially the crazy friends and the nice friends – you know who you are!

So there you go: a year of mine, and some of what happened in it.

Some good, some bad. Which is pretty much what life is all about.

I have a feeling this coming year will be better. Partly because I think it will.

:) L

P.S. Sorry I haven't been posting regularly. To be honest, I've felt sick just thinking about being sick. So I've just tried not to think about it, and that's meant not posting. I hope that's changed now. New year, new leaf, onwards and upwards, and all that!