No More Daily Anti-Inflammatories!

Had to have a small procedure last week, which meant I had to stop taking anti-inflammatories the week before as they can increase the amount of bleeding and bruising, and guess what?? I felt really no different off them than on (other than my digestive system felt a whole lot more settled), so off them I will stay! My rheumatologist says that’s fine, as long as I’m feeling OK, and that I can always take them as needed, if necessary.

So yay re that!!!

And I’ve just cut my dose of Methotrexate down once again, this time to 15 mg. Soon, if all goes well, I’ll have to switch to the pill format, so I hope that doesn’t make me feel blech (I know that the pill form can do that, and the injections themselves already make me feel slightly nauseous — not the needle itself, per se, but the drug, I’m pretty sure).

But whatever I can do to take less meds, the better. Not to say I’m anti-drug, cause God only knows that’s not the case, it’s just I’d rather take the minimum necessary to feel optimal.

Make sense? I think it does, and I’m so thrilled that the Actemra is working well enough that I can cut back on other medications. Woohoo!

Feeling Normal

Went to see my rheumatologist last week. Not because there was a problem, but because I've been feeling so good!

She had mentioned before I went on Actemra (aka tocilizumab) last spring that we might be able to cut back the dose of Methotrexate I'm taking if everything went well. And it has been going well. For about the last 3 months, I've been feeling normal. That feels so odd to me after 2 years of not feeling normal, but there it is. My hands, my feet — normal. I can even walk to the subway, some 25 minutes, and my feet aren't aching by the time I get there. Woohoo! It's an amazing feeling. I still have the odd twinge here and there: Just the other day I walked home from the subway and when I got home, one of my toes all of a sudden decided it was time to freak out and hurt, but whatever! That is such a rare occurrence now, it's something I can just ignore.

So I made an appointment and said I wanted to cut back on the Methotrexate. She talked to me about how I was feeling and did a physical exam and agreed that it would be fine to try. She said we'd do it in 5 mg intervals, so I just cut back to 20 mg this week. If all goes well, we take it down to 15 and so on. And once it's below 15, if we get to that stage, we'll switch to the pill form of the drug, instead of the injection. She did make it clear to me, though, that while short-term studies show that Actemra is just as effective on its own as it is in combination with Methotrexate, there are no long-term studies yet. But I know we'll closely monitor how things are going, both with physical exams and X-rays, so I'm feeling good about cutting back.

Quite frankly, I'm thrilled to be cutting back on any of the multiple drugs I take! I've also, slowly, very slowly, been cutting back on my migraine meds and this week have finally started going some days without any. So far, so good! I'd love to cut a number of meds from my daily schedule permanently if I can, so fingers crossed!

Let's face it, the less drugs I have to take to maintain good health and mobility the better.

I'm Back!

I know, I know, it's been freakin' ages since I last posted anything here, and I'm sorry for my prolonged absence.

Things have just been rather odd in my life the last few months — non-RA related, I'm glad to say — and I've just, well, disengaged to be honest.

But enough of that.

Happy New Year's to you all! I have been silently following along with those of you who have blogs, really!

On the RA front, I'm actually doing very well. I'm still doing the Actemra-infusion thing (aka tocilizumab), once a month. For the past couple of months, I've felt more or less normal. Yes, you heard me correctly: normal. It's kind of freakish actually. I've had the odd pain in my hands and twinge in my knees and feet, but really hardly at all.

In fact, I'm going to email my rheumatologist to make an appointment to talk to her about cutting back on my dose of Methotrexate. When I started taking the Actemra, she mentioned that that might be a possibility, depending on how things went. It would be good, because I have to say, taking it has now come to make me feel ill. Not ill because of the needle, I don't think, but because of the thought of the drug, which started, again I just think, because the drug itself makes me feel slightly nauseated. So, a combination of the physiological and psychosomatic, I'm pretty sure, but there you go.

In other drug news — walking pharmaceutical stew that I am — I've been cutting way back on my migraine medications slowly but surely, since I rarely get them anymore, and when I do, my acute medication takes care of them quickly. I'm down to just 25 mg of Topamax each day and hardly any Verapamil. Yay! Hoping to get that down to nothing in the next couple of months. The fewer drugs at this point, the better. Would that it could be nothing…

:) L

P.S. The pic is of my sister and me. Cute, no?

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

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!

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.

Sigh.

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

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.

And....

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!

Erosions or WTF!

Erosions.

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!!!

Anyhow...my 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.

COLDASS ICICLEHEART!!!

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