Saturday, January 30, 2010

Prednisone Taper

So far, so good on the prednisone taper front.

I started taking 20mg of Prednisone on Jan. 5 of this year. Nothing else had been working well enough – not the systemic corticosteroid shot I received on Dec. 23, not the Voltaren (diclofenac), nothing. So my rheumatologist prescribed the Prednisone so I could function and work until we could get a diagnosis.

Now, I'm supposed to cut back 5mg a week, if I feel good, till I'm off it. I started to do that Thursday, since Wednesday was my first day of the Methotrexate and Enbrel combo.

So far, so good! I wasn't sure what to expect at all. Last night I felt a bit achy in places I haven't in a while, like my knees, and same this morning, but no stiffness in the mornings. I'm pretty pleased.

Just very tired. Slept like crap last night. Went to bed at 11, which is late for me, but got sucked into the blogosphere (again!), and then woke up at 4:30 this morning and couldn't fall back asleep again. Got up at 7, had breakfast, did the dishes, prepared and roasted some veggies for this weekend, then had a nap at 9 (!). Now I should really go out and get some groceries, but it's -14°C (-17°C with the windchill) and the comfy, cushy couch is looking more and more inviting once again!!!

Thursday, January 28, 2010

What a Relief

It's done! I've now got my double-injection night under my belt (ha! literally and figuratively since I did the deed in my stomach) – a dose of Methotrexate and my first-ever dose of Enbrel, all done on my very own.

Make that with the help of my friend Tracey, who not only managed to  be present but actually watched and didn't pass out (see comments from my previous post for full disclosure on that front).

I'd read the SureClick instructions about 15 million times, watched a handy video on the U.S. site with Tracey while waiting for the medication to come to room temperature (damn, had done the Methrotrexate injection then realized I hadn't yet taken the Enbrel out of the fridge!) and iced my abdomen just in case, since I'd read that Enbrel could sting going in. I was prepared on all fronts. The medication comes with a handy instruction card in the box, too, so there I sat on my comfy, puffy couch, light trained on my abodomen, Tracey with card in hand, me with SureClick injector, iPhone with Enliven support service number nearby should something go awry.

I pulled out the white cap as indicated (no twisting!!), pulled my skin taut, pressed the SureClick down (at 90°!), pressed the purple button and felt a slight sting (it must be said – very, very slight!). All good on the Enbrel front! Both Tracey and I started counting, 1, 2, 3... then at 6 verging on 7, a loud click.....What?????? We were supposed to count to 15 seconds!

I sat there frozen. I looked at the window on the injector as Tracey asked, "Is it purple?" (The window's supposed to turn purple when the injection's complete.) I said, "I think just halfway."

So we called Enliven (make that, I talked Tracey through how to use an iPhone to call Enliven), and waited, and waited (OK, maybe a total of two to three minutes in all, if that) to talk to a nurse, me all the while holding the SureClick pressed firmly against my stomach, saying, "I think maybe I moved it a bit?"

When I got on the line with someone (love the iPhone speaker capabilities, since both my hands were fully occupied!), the nurse asked a couple of questions and got me to remove the SureClick from my skin. Then she asked, "Is the needle sticking out?'

"Um, no," I said.

"Did the medication spray out?" she queried.

"No, no medication," I answered.

I swear there was laughter in her voice (I'm sure just my imagination!), as she told me to look once again at the Sureclick window and wave my hand behind it, and if I couldn't see any light coming through it, then the injection had indeed completed.

I obviously need less "mood lighting" in my apartment and more "task lighting." In fact, maybe something more "clinical"?

Not to mention a stopwatch...

Tuesday, January 26, 2010

Kick-Ass Drugs & Impatience

I just drove home with over $1,700 worth of drugs in my car – it's a good thing the cops didn't pull me over.

Just kidding!

The drugs? My first four SureClick injections of Enbrel. That's it: four weeks' supply. I could have gotten more, but charging that much was enough, and if the power goes out (they have to be refrigerated), I don't want to be responsible for having more on hand.

Along with the drugs, I got three Toblerone bars to feed my emotional need for comfort at the moment. I had a day filled with some crap moments. My three little toes (hey! one Toblerone bar for each!) on my left foot were hurting this morning, then kicked up a fuss again this afternoon to such an extent that I had to pull off my boot at work and ice them. (And what is it with those little toes – now the right foot is hurting. It's not like I dance en pointe or anything.)

Then, because of the timing of everything, I'm not sure Enbrel's Enliven support services will be able to get a nurse here tomorrow night to oversee my first injection. I'm taking my Methotrexate tomorrow, and I want to do both injections on the same night, so whether someone's here or not, I'm going for it. The other injection was a breeze, so how hard can the SureClick be? After all, it's not like you get to test an EpiPen before you use it.

I started reading forums to see if anyone else had done an injection for the first time on their own and all I read was how horribly painful it was, not how hard it was. I started freaking out, until I found this site that put things in perspective.

So, am I totally naive? Can I do this on my own? I'm pretty confident, and really had absolutely no problem at all with the Methrotrexate injection.

Thoughts?

Sunday, January 24, 2010

Weekend Woes & Happiness

Ten little teeny tiny toes – not happy campers. OK, not all 10 of them, but the alliteration sounded good. Them and my hands and wrists, left knee and elbow, too. Toss in my left ankle...damn, that! My ankles have been the only joints not affected to date, and starting to feel one of them through the 20mg of Prednisone I'm on daily doesn't make me happy.

But, having said that, the weekend was pretty good. Being able to walk the Toronto Interior Design Show on Friday was great. Total bonus: for the first time since this started, on Friday evening my hands felt normal! I actually thought, Maybe this is going away. Course, Saturday the aching was back, but whatever...the brief reprieve was nice.

Then yesterday I went to the gym, biked for 10 minutes and did strength stuff using – get this! – 5 lb weights for bicep curls, triceps and shoulder presses. Woohoo! I'm feeling so much less weak than I have been. Later, it was out for dinner (Okinomi House – yum!) and a movie ("The Young Victoria" – very good + fab costumes) with a friend. A fantastic time was had by all!

Saturday, January 23, 2010

My Pharmacist Has My Back

Got a call last night from my pharmacist.

Turns out she'd been away from work for a while and when she got back, she realized that I'd had a hold on my records for a folic acid prescription and that I'd recently been prescribed Methotrexate. She was concerned and wanted to make sure that I was taking over-the-counter folic acid.

I must seriously be one of the luckiest, most cared for people around lately! First, the Enbrel pre-authorization gets turned around in a single day, then this! This lovely lady is the same pharmacist who gave me her cell number a while back, just in case I needed to call. Who does that kind of thing anymore? Apparently, some people.

Yesterday was a really good day, all round. I headed down to the Toronto Interior Design Show in the afternoon with the Style at Home art girls. Wasn't sure how my feet would hold up, but they did pretty well. My legs felt shaky, but the carpeting on the concrete floors and my ├╝ber-comfy but super-stylish Rockport boots kept my feet feeling good until the very end when they just felt sore, not painful. Later on last night, they did hurt, but not horribly so, and the Tylenol helped quell that. I thought of icing them, but, truth be told, I was just too damn lazy and tired to get off my comfy couch.

And speaking of my couch, I can't say enough about it. I've always lived on my couch come the evenings (haha!), and now more than ever. When RA hit, and the pain and stiffness was too bad (pre-Prednisone), my beloved couch was just too low and lying down wasn't an option – I wasn't sure I'd get back up again. Once I was feeling better, though, I had the idea of pumping up the seats. When I first bought the couch (it's a custom one), I'd ordered it with down seat cushions. They proved to be too soft (I was constantly fluffing them up), so then I'd ordered foam-core seats with down surrounds, and stored the down seats behind my living room draperies. I hauled out the down seats (damn, even feathers are heavy when your hands hurt!) and plopped them on top of the existing ones, making for a nice high perch. Perfect! Doesn't look pretty, but pretty ain't what I'm going for right now.

Thursday, January 21, 2010

Approved!

I can't believe I've already been approved by my insurance company for Enbrel (entanercept)!

I just got a call from Manulife Financial on Tuesday saying I needed to send in a pre-authorization (PA) form for it. I'd had a conference call with them and Enbrel's Enliven support services last Wednesday, and at that point it seemed a pre-authorization wouldn't be needed, but then the phone call.

I had my rheumatologist fill out the PA yesterday morning and she faxed it in right away, and lo and behold in the mail today – today (yes, just 1 day later!) – the authorization! Talk about service! I am seriously gobsmacked! Double woohoo!

It feels good on top of a day that's seen me feeling really pretty tired and somewhat shaky. I'm still not sure if it's the Methotrexate, the emotional roller coaster I've been on lately or a combination of the two. I took the day off and slept and rested.

I think next week's post-injection period will be telling.

Wednesday, January 20, 2010

I Did It!

The injection ended up being a breeze! Woohoo!

It helped that I'm used to handling needles and syringes (my cat had diabetes), so I was used to the whole drawing-up-the-medication, getting-rid-of-air-bubbles stuff. Then my doctor let me try using a capped syringe so I could get the feel of how much pressure to use to inject the needle, and then I was off. Done and done!

She was amazed, I think, that I wanted to do it in my stomach, but I felt a little more squeamish about doing it there than in my legs, plus I'd heard it hurt less there, so I wanted to get it out of the way under her supervision. I honestly didn't feel it at all when the needle or the 25 mg of Methotrexate went in. Super!

Now I'm just feeling bagged. I ended up leaving work a bit early and having a short nap (didn't want to sleep too long, cause I don't want to screw up my sleep tonight). I'm not sure if it's the drug, or if  the effects of the whole last week-and-a-half have finally caught up with me...We'll see.

Tuesday, January 19, 2010

Big Day Tomorrow

Picked up my prescription of Methotrexate today. Also got syringes. No folic acid was available. My rheumatologist had prescribed it for me, but the pharmacist said the company that makes it was revamping their facilities and it hasn't been available for some time (??). I had to buy some regular stuff and cover the cost.

Tomorrow I learn how to inject myself. Oh joy! Luckily, I'm not afraid of needles. Plus, I had a diabetic cat (yes, they do exist!), so I know how to fill up a syringe, although it's been a while.

Am I nervous? Yes, I have to admit I am somewhat. The thought of sticking a needle into myself is daunting, despite the above. And in the stomach? Hmmmm. Although I've heard it hurts less there...

We'll see.

P.S. Got a call from the insurance company saying I need a pre-authorization for Enbrel; wish they'd told me that last week when the drug company and I had a conference call with them...

Saturday, January 16, 2010

Gym

My feet weren't killing me, so I went to the gym.

I'm a relatively fit person (don't get me wrong, I'm not superwoman, but I do work out regularly), and I've been to the gym precisely once since RA hit.

The first time I used the stationary bike. That was an experience. I sat down, set off at Level 1 and thought, Hey, this isn't bad! Then Level 1 actually kicked in, and I thought, You have seriously got to be kidding, this can't possibly be Level 1!!!!!! It was freaking hard!

I've read about fatigue with RA (which, luckily, I've escaped huge levels of), but weakness is something that has been seriously debilitating with me. I've even had to resort to removing the duvet cover from my down duvet to make it lighter and easier to manipulate, that's how weak I've been at times.

But not being able to bike at Level 1 when I'm feeling pretty good? That made me realize even more just how weak I am.

Today, I tackled the elliptical machine. Getting on it was a little shaky, but once I got going, I was pretty good (again, Level 1, even though I was used to doing Levels 8-10 for 30-40 minutes). I did 10 minutes, then decided to push it to 15. Wasn't sure what I'd feel like tomorrow, but decided it was worth the experiment. If I don't push, how will I know? Plus, exercise is recommended for people with RA.

Happy! I did some strength exercises, too, to top things off. I work with an excellent personal trainer, who always emphasizes proper form, so while she wasn't with me today, I focused on simple exercises like bicep curls that I know I can do properly without screwing things up. Abs were next.

Then I actually lay down on the mat to stretch. You have no clue how big a step that was. I've gotten together with my trainer just to stretch about three times since this began and each time getting up from the floor has been a major effort. I can't use my hands or wrists, and trying to figure out how to get up without hurting myself or having her pull me has been like some crazy turtle on its back/science experiment!

Then reality hits. I've got a foam 1/2-tube thingy on the mat that I use to lie on lengthwise to open up and stretch my chest muscles, and I can't manage to maneuver myself onto it without it wiggling out of position. I have to ask the woman next to me to hold it steady. I don't have any problem at all asking her to help me, but after I get onto it and I'm lying there, I start crying. I have random moments of emotion like this. Something I used to be able to do myself without a thought is now impossible. I'm banking on the meds to help me.

If not, adapt!

Letting People Know

Called one of my cousins today to let her know about me. She was great. Offered to come from far away to spend the weekend with me and cook me yummy meals (she's a great cook!).

A number of other people already know, and they've all been amazing. My sisters, of course, know. As well, my closest friends have been there for me from the beginning, and their support has been amazing. They've sat with me at the doctor's, brought me meals, cooked for me, done my dishes, helped me with laundry, kept me company, talked, listened, and, probably most important of all, made me laugh.

What would I do without all of my lovely friends and family? They really are amazing.

Friday, January 15, 2010

A Whirlwind

This past week has been crazy. Since my diagnosis on Monday, I've had a lot of decisions to make.

On the work front, a job was available, and I was being interviewed yesterday.

On the health front I had no idea how I was going to react to new drugs – I'd decided to take Methotrexate and Enbrel aka etanercept (if my insurance company would approve the Enbrel).

Behind the scenes, my life was changing.

What to do? What to do?

The extra money a promotion would bring would come in handy. After all, this arthritits thing could get bad, couldn't it? I've done a lot of research, and while many people manage well on meds, there are plenty who don't. Plus, I really wanted the job and had for a long time. I'd worked my butt off, quite frankly, and was the person who filled in for it as a matter of course.

In the end, thought, the decision was easy: my health was the most important thing.

How do I feel? Sad, but life goes on, and now, the big decisions on the job will be someone's else responsibility. The only big decisions I have to worry about are my own.

Thursday, January 14, 2010

Medications + Supplements


Below is a list of the medications I'm currently on, along with supplements (some of which I was taking pre-RA saga).

Before the rheumatoid arthritis hit, I thought I already popped plenty of pills. Ha! That was a misconception!

I've been on prednisone just a short time now, but it's doing the trick that anti-inflammatories alone weren't doing. I'm starting to feel like I can move somewhat normally, although my hands and feet don't want to play along most days.

My rheumatologist wants me off the prednisone asap, though (me, too!), so as soon as I can get all the vaccines/TB tests/chest x-rays I need and get the insurance company go-ahead, major drug use is in the forecast.

Medications, Rheumatoid Arthritis
        Prednisone (20mg 1x/once daily)
        Voltaren (75mg/2x daily)
        Prevacid (30mg/1x daily)
        Tylenol Extra Strength (400mg/4x daily)

Medications, Migraines
        Topamax (75mg a.m. daily/50mg p.m. daily)
        Verapamil (40 mg/2x daily)
        Loestrin
        Imitrex (20mg nasal spray; as needed)

Supplements
        Vitamin D3 (1000UI/2x daily)
        Calcium (500mg/1x daily)
        Vitamin C (500mg/1x daily)
        Omega 3 Fish Oil (1000 mg/3x daily)
        Glucosamine (500mg/1x daily)
        Ginseng (55 mg/2x daily)
        Biotin (1000 mcg/1x daily)
        Multivitamin (1x daily)

Diagnosis

My diagnosis is seronegative rheumatoid arthritis. That means my blood tests for things like rheumatoid factor and anti-CCP have come back negative. However my ESR test was 33 and my CRP (C-Reactive Protein) test came back at 102 (normal is around 8), which indicates some pretty major inflammation. Plus, I've been walking around with a low-grade fever since the beginning of December.

Those, combined with my history and physical exam, result in the diagnosis. Keep in mind that there is no one test that says, yes, you have rheumatoid arthritis.

I was lucky to get diagnosed so quickly because my symptoms came on so explosively (pretty much all my joints together, over the course of a 12-day period). Others aren't so fortunate and play a guessing game with their doctors for much longer.

Wednesday, January 13, 2010

Oh Lordy! Part 3

Dec. 25
My feet swell up Christmas night.* I can feel it as it happens, they swell that quickly. Merry Christmas to me!

*A quick call to the pharmacist (whom I now know by her first name – I even have her cell phone number if you can believe it!) the next morning reveals that since I've had five doses of Voltaren, it's unlikely the swelling is caused by an allergy to the drug, but rather the busyness of the season. That despite the fact that I pretty much gave up on everything but the bare essentials well before our Christmas Eve celebrations. Nonetheless, she advises more rest. My sisters kindly allow me to sit about, as they have already through all of our celebrations, with my feet up – literally and figuratively!

Oh Lordy! Part 2

Dr. Brown's office calls on Friday – they've gotten me an appointment with a rheumatologist the following Wed. Dec. 23. Hallelujah! I'm thrilled! I thought it would take weeks to get in with a specialist.

A friend offers to take me, but I thought I'd drive (we're without an editor at the magazine, so I've got the parking spot at the moment, and it's a godsend at times because my feet feel like they've been beaten with a cane) and there's parking at the rheumatologist's, so at first I say, no.

The day before the appointment, though, I feel so crappy I call to tell her I'll take her up on her offer. It's a good thing I do. The rheumatologist is very nice, exams my joints, takes my history, reviews my bloodwork from Dr. Brown and tells me she thinks I have rheumatoid arthritis. I promptly burst into tears. Not surprising. That's the way I react when I'm in shock. Despite hours and hours now of searching the internet, and hoping that it's something else, everything I've been reading leads me to think the same thing.

Full of hope that's it's not a chronic thing, I ask if it could be a viral form of arthritis. She says possibly and that we'll do all kinds of bloodwork, including checking for that. She's also going to send me for x-rays to see if there's any indication of damage. Before I go she gives me a corticosteroid injection to help me out over the holidays; I choose that over Prednisone pills, since I don't want to get started on those if I don't have to. I'm also prescribed Voltaren (diclofenac) instead of the Apo-Naproxen EC I've been taking.

I leave and my friend kindly eats up her entire afternoon taking me first to the blood clinic, then the hospital for 21 – count 'em: 21!! – x-rays. She couldn't be nicer and more supportive and keeps me laughing the whole time. My crazy French friend!!

Oh, Lordy! Part 1

I was off the week of Nov. 30 last year. I had a Christmas party planned for the upcoming weekend and had a ton of baking to do, plus I was looking forward to just relaxing, doing some Christmas shopping and getting together with a few friends.

On the Monday, I got together with my personal trainer for a strength session. I hadn't been working out as regularly as usual (crazy busy at work the last few months!), but when I was sore on the Tuesday, I thought it was a bit strange (I'm generally sore 2 days after a workout) and went for a light cardio workout as usual anyway. My hands were kinda sore, but I put that down to all the baking and stirring I'd done Monday aft. Wednesday, still sore feeling all over and hands still sore, but again, baking and stirring... Thursday, light cardio again in an attempt to loosen up and more baking that aft.

By Mon. Dec. 7, after no more workouts or baking for four days, I knew something bizarre was going on and called my family doctor and got an appointment for the Wednesday. Tuesday morning at 6:15, I called in somewhat of a panic because I had trouble getting out of bed (!) and said, "Can you call me back and let me know if you can get me in today? Seriously freaking out." Or something to that effect.

I hadn't heard back before I left for work, so I just drove to doctor's office, hoping they could fit me in. My doctor wasn't available, but I saw another in the practice and she checked me over, mentioned rheumatoid arthritis, asked if I'd been to New England (I got the connection – Lyme disease), and I said, yes, but years ago, so she sent off some blood tests and said the results should be back in a week.

Cut to just before the holidays. I still hadn't heard back, so I called to find out the results were in, but I hadn't heard since they were negative. I pointed out that about 20% of people with a negative rheumatoid factor test can still have rheumatoid arthritis, and I needed to absolutely see a doctor because now I really couldn't get out of bed.

I was actually on the verge of panicking at that point. I woke up one morning determined to take my time and stretch and move around for 15 minutes before even trying to get up, but despite that, by the time I got myself up, I was so nauseated by the effort I had to lie back down again. Lie back down, when I'd just tried so hard to get up! Insane! And on top of that, chills and shakes.

I insisted I see a doctor or that one was called. I was damned if I was going to spend the entire week and a half of Christmas holidays frozen in bed not knowing what the hell was going on. And it wasn't just the frozen in bed. Each time I sat for more than a few minutes, my whole body was freezing up again.

Lucky result: my doctor was called, realized (cause she's a great, sympathetic, wonderful doctor!!) the severity of the situation, and immediately prescribed an anti-inflammatory and Tylenol and had her staff call in a referral to a rheumatologist. I was thrilled by her response! And did I mention all this happened while she was on holiday! Kudos to Dr. Vivian Brown!

How To Begin...or WT?

I had a dream last night. My sister and two friends and I were out in a country town heading to our spa appointments. It was a beautiful winter day: there was snow on the ground, but the sun was shining and it was warm enough that the snow was melting a bit. I couldn't have been happier as we were walking along. I love walking. As we continued, I fell further and further behind. I couldn't figure out why. My legs felt so tired and weak and sore. Finally my sister noticed and came back to help my. She helped me up with her strong arms, got me up the stairs and on my way. Something definitely wasn't right but I had no idea what...

When I woke, I realized my brain is still trying to work this all out.

The symptoms of rheumatoid arthritis first starting coming on strong for me at the end of November 2009. Over the course of 12 days I went from fine to barely being able to get out of bed – not a lot of time to wrap my head around it all, I'm sure you'll agree. On the one hand, I think I'm coping really well; on the other, maybe I'm experiencing a wee bit of denial about what's going on?

Not sure.

In any case, I 've decided to write this blog for a number of reasons.

1. Because I need to take control in some way – any way, quite frankly.
2. It allows me to track what's happening to me.
3. I've found other RA blogs a huge source of info/comfort/support in the midst of all this + hope to provide the same to others.
4. It's been proven that writing down emotions/feelings makes us feel better.

That pretty much sums it up for now.

I'll be back with a lot more posts shortly to let you know my history and where I'm at in terms of my meds, symptoms, etc.

Welcome along for the ride!