Update

I know I haven't posted in ages.

It's been crazy at work and otherwise somehow. How is it possible to go into the office only 3 days a week and still be crazy busy? But there you go!

Here are some quick updates on what's up in my world:

Shoulder: killing me practically constantly + pain in deltoid and even bicep now at times. Going to go see family doctor in a week when she's back from vacation to see what the heck is going on.

Sleep: Went to sleep clinic. Doctor thought problem wasn't apnea or anything. Tried medication, which worked in terms of prolonging sleep till later. Excellent! Now sleep totally screwed up because of pain of shoulder. Meeting with sleep doctor again next week. Not so excellent. :(

Meds: Trying Leflunomide, aka Arava. Basically, when my benefits run out sometime next year, I'll have to apply for government benefits, and I'll need to have tried Arava. Really don't know the ins and outs of all this. Still need to research everything. I'm keen on it, cause it's way less expensive than Enbrel. Had to laugh at my pharmacist, though, cause when I went to pick it up along with refill of Methotrexate, he said something about it being expensive. I said, "Um, not compared to Enbrel!..." Let's hope it works as well as the Enbrel. Have to admit, I've been so busy, I haven't even researched how well it's supposed to work compared to Enbrel re joint damage, etc. Must find time this weekend to look into everything! And I mean everything!! Just started on it. Pills not injections, too – um, can you say bonus!

That's it, I think! Sorry for the rush!

Warning!

Here, girls and boys, is why you should never do an Enbrel injection without icing beforehand!

The other night I got home, took the Enbrel out of the fridge, set my timer, figured I could jump in the shower, do my Methotrexate injection, then get the Enbrel shot done, all before getting dinner. Why not? The shots are a breeze now!

By the time I'd taken out my contacts and had my shower and gotten all the other stuff out for my shots, 22 minutes had elapsed. Hmm, 8 minutes for the Methotrexate injection? Sure! And, indeed, I did it – with 2 minutes to spare. Course that meant no time for icing my stomach. When I first started doing injections, I'd been icing my stomach for 20 minutes, but lately it's been 10, sometimes slightly less, so I figured, what the hell? So off I went with the Enbrel. I didn't even both with alcohol swabs for either injection, since I'd just had a shower, and I'd read somewhere (couldn't remember where, but I knew it was a reputable site) that soap and water were just as good as alcohol.

Bang! And it was done. There was a biggish blood drop, but that's happened before, and it didn't sting anymore than normal, so great!

Next day, huge bloody bruise!

I didn't make the connection at all until sometime later: no icing, big bloody bruise. Oh!!! No icing = big bloody bruise.

So, this week, back to icing for at least 10 minutes....

Drip, Drip, Drip Goes My Nose

Ever since I started taking both Methotrexate and Enbrel I've had a drippy nose. Not constantly, just all of a sudden, out of the blue, my nose starts running. It's not stuffy or anything. There aren't any symptoms other than the sudden dripping, like a faucet being turned on then off again, multiple times a day.

Rhinitis is the actual medical term for the condition, and it's one of the adverse side effects of those two medications.

When I mentioned the drippy nose to my rheumatologist at my last visit, she queried, "Allergies?"

I said, "No. I've never had any seasonal allergies, plus I've had the drippy nose ever since I started taking the Methotrexate and Enbrel back in the winter." In other words, even though I know you can develop allergies as an adult, it didn't just started with all the spring pollen floating around in the air.

But, oddly enough, in the last couple of days, the drippy nose seems to have been on the decline. My RA symptoms overall have been better, too.

Is there some odd connection? Drugs working better, body getting used to them, less drippy nose?

Ahhh, the mysteries of RA!

A Visit with My Rheumatologist

Today I went to see my rheumatologist for the first time since February.

I told her that up until last week, I've been feeling progressively worse, and that the week before last had been the worst week since I'd been on heavy-duty meds and, in fact, I had been going to tell her that I thought the meds weren't working very well. But last week I had a really good week (figures! just before I go to the doctor!), so that's changed.

She checked me over and I have no inflammation.

My bloodwork's been fine.

Confirmation that I have Raynaud's disease – check.

She asked about infections – nope, none.

When I mentioned my drippy nose, she said, "Allergies."

I said, "No. I don't have allergies, and it only began when I started the Methotrexate and Enbrel and that was in the winter."

When I mentioned pain, she asked where, and I told her. I said I've been having more pain now overall than I had, other than right at the beginning. And I told her about getting back into exercising on a regular basis.

She said that the pain was from exercise and muscle soreness and getting back into it.

I said, "No. This pain is from RA. I know what exercise pain feels like and this is different. I'm on the elliptical, and first my left foot hurts, then my right foot, then my left knee starts, then my left elbow. It's pain because of the RA."

Not to mention I have the pain all the time and had it before I started exercising.

Surprising response from her, I think (although, in the interest of full disclosure, I hadn't said exactly when I started exercising and when – exactly – I started having the pain).

Don't get me wrong – I like my rheumatologist. She immediately launched an aggressive attack on my RA in term of meds, etc. She answers my questions. She responds to my e-mails. She renews my prescriptions without making me come in for an appointment.

I just think it's odd she thought my pain was the result of my renewed exercise.

Of course, the appointment was way too short, and I thought of all sorts of things I should have said after. Not things I wanted to cover off: I had all my questions, and we went over them all, and I got all those questions answered and got all the prescriptions I needed renewed. What I mean is things I thought of in response to the conversation. Things like, if the exercise is the cause of the pain and not the RA, what explains what happened the other night? It was the Thursday night of that bad week. I was just sitting at my dining table, not moving my feet at all, and I'd been there a while. All of a sudden, I felt a sharp pain in my left foot, so sharp I gasped out loud and then started crying.

That's not from exercise. That's from RA.

What a Pain

I haven't posted anything for a few days, mostly because I'm so tired, mentally and physically. I've barely been tweeting anything either I feel that blah.

 I'm also noticing what seems to be becoming something of a cycle the last three weeks or so: I do my Methotrexate and Enbrel injections on Wednesday nights, but I don't think the drugs are lasting the full week. Starting Mondays or Tuesdays, I start getting more sore. My hands and feet, plus random other places. On offer today: my knees, elbows, wrists and neck.

Now, all of these places and others are sore/achy/cause brief sharp pain on and off at times, but this is something more consistent. And today they've been hurting for longer periods. I'm not saying they're killing me. This isn't comparable to the pain I felt when I had migraines before going on prophylactics – that pain had me lying on the bathroom floor contemplating smashing my head against the tiled wall to try to counteract the pain (oh, the joys of migraines!).

No, this pain is sharpish, but ongoing. Achy and ongoing. Throbbing and ongoing. And it's that ongoing nature that's set my teeth on edge and – partially – brought tears to my eyes (I say partially because part of the reason my eyes welled up is the thought that there might be no end to this cycle of awfulness...and that there is no end to the RA...).

The only time I ever went to the hospital because of a migraine was the time my doctor and I decided to stop my daily meds to see if the migraines had maybe, just maybe, stopped. I ended up with a migraine that wasn't too bad but that lasted for 72 hours. If the pain had lasted for less time I could have handled it, but by the time it got to about 60 hours, I'd had enough and couldn't take it anymore.

I sincerely believe pain is relative, for me at least. More intense pain of short duration is easier for me to handle than less intense pain of long and consistent duration.

And I'm trying to stay away from Tylenol because I want to get an absolutely unadulterated idea of exactly what the Methotrexate, Enbrel and diclofenac I'm on are doing for me so I can report that to my rheumatologist when I see her next month.

Anyway, that's pretty much it. Except this. If I haven't said it before, I'll say it now: RA seriously sucks.

A Migraine Cure!

I think I've found a cure for migraines: RA!

OK, I'm sure that's not the case – and I don't want to be taken for a crackpot – but I've only had one migraine since getting RA back at the end of November. That is totally unusual for me. The norm would be 3-4 a month.

So what's the deal? Must be the drugs I'm on. First I thought it was the Tylenol Extra-Strength (I was taking 1000 mg daily), but I stopped that about three weeks ago. So I can only presume that the other anti-inflammatory (Voltaren, aka diclofenac) I'm on or the Enbrel or Methotrexate are having some kind of effect on my migraines. Especially since spring and fall are horrible times of year for me, with falling barometric pressure being the worst trigger.

Must discuss with my neurologist next time I see him!

P.S. March 20: It's occurred to me that since there's been no sign of migraines, I can try cutting back on my prophylactic medication, so I started doing that today. I cut my morning dose of Topamax by 25 mg. We'll see how that goes, but I'm happy to be taking as little medication as possible, given how many drugs I'm on overall. Don't get me wrong, I am so thankful for what drugs can do for me – I shudder to think about what life would be like without them – but if I can live life equally well without them, I'm all for that!

Enbrel & Toblerone Bars

 

So I've had a reaction to my Enbrel shot from Wednesday night – just some slight redness and soreness. It's the first time I've had a reaction since I started the shots five weeks ago.

It's also the first time I haven't had a Toblerone bar after having the shot.

A coincidence? I think not!

Enjoying the Olympics

Got through my shots in less than 10 minutes tonight!

It was my own version of an Olympic event. Ha!

OK, not really. I just decided to do them right when I got home, rather than wait till closer to bedtime and be kind of nervous all evening, having them looming over me.

So as soon as I came home I got the Enbrel out of the fridge, set my stopwatch on my iPhone and got everything ready: sharps container, alcohol swabs, cotton balls, Methotrexate, syringes, ice pack for deadening my stomach, blah, blah, blah. (You see how blasé I'm becoming? Good, no?!)

Then, once I'd iced my stomach for the obligatory 20 minutes and the Enbrel had warmed to room temperature for 30, I was off: skin swabbed, white cap pulled off, skin pulled taut, syringe in place, button pressed and boom! on to the Methotrexate. A couple of big air bubbles slowed down the action, but I soon had the syringe filled with my 25mg, was ready in a seated position, skin pinched this time (and swabbed again, of course!), syringe darted in, drugs pumped in (OK, not so dramatic as that, but whatever!) – done!!!

Course, no one was cheering me on, but, hey, a girl can dream!

Now I just need me some cute red mittens and a gold medal and I'm set!

P.S. Dinner after the shots consisted of a treat: Cream of Wheat (is that just a Canadian thing?) with organic Canadian maple syrup drizzled over it (yum!). Dessert: the obligatory Toblerone bar (and, no, I don't always eat like this; I actually have a quite healthy diet!).

P.P.S. If you want to win a pair of those cute red Canadian Olympic mittens, check out my friend Fiona Richards' blog, Cafe Cartolina, at http://cafecartolina.blogspot.com/. She designs supercute eco-friendly cards, and she's doing The Great Canadian Mitten Giveaway (you just have to post a comment about what you know about Canada for a chance to win). I seriously want a pair!

Raynaud's or Get Out the Mittens a.k.a. Me As a Three-Legged Dog

So, I can feel the soreness seeping back into my body. I'm down to 5mg daily of Prednisone as of yesterday. My hands were somewhat stiff when I woke up this morning, and I'm aching more overall. Having said that, things aren't as bad as there were at the beginning, so that's good! I'll be interested to see how the Methotrexate and Enbrel are doing on their own when I drop the Prednisone completely next Thursday...

In the meantime, another interesting twist in the RA saga. I've developed what I'm pretty sure is Raynaud's syndrome or disease (haven't been diagnosed yet, so don't quote me!). Last night I went out for dinner with a friend. Before leaving I went to the washroom, washed my hands with cold water (no hot water on tap for some reason), then left. It was cold out, and my car was cold, but it didn't take that long to get home. Still, I was cold and left my gloves on till I got to my apartment, and when I took my gloves off, multiple fingers (not all) had that corpse-like look (in Raynaud's, small arteries in places like your fingers narrow, constricting blood flow).

I've had Raynaud's before (medication-induced by beta-blockers I was on for migraine prophylaxis), so I'm pretty sure that's what was going on, but I'm not happy about it. It's potentially dangerous, and I seriously don't need more crap on top of everything else, but what do you do? Deal, cause what else are you going to do?

I was telling my friend last night that I have a sort of mantra or theory or policy or whatever you want to call it (feeling a bit brain dead right now as it's the end of the week). It's my three-legged dog theory. A dog that loses a leg doesn't freak out about the fact that it's lost a leg – it doesn't know any better. It just starts hopping around on three legs. So that's what I'm trying to do really: hop around and not focus on what's been lost...

P.S. I should have taken a picture of my hands last night (or hand – hard to take a pic of two hands with an iPhone unless someone else is doing it!). Next time the Raynaud's thing happens, I will so anyone who doesn't know what it looks like can see!

P.P.S. Settling in to watch the Olympics. I am a total Olympics freak – once I start, I cannot stop! I will watch anything and everything. And I'm not even a sports nut! So sorry they had to start in such a sad way, though...

Cautionary Advice

Just got back from my family doctor. Had to renew one of my regular prescriptions.

While I was there, she ran through all of the new medications I'm on. She talked to me about Enbrel and how it was making me immune-compromised. She added that, while she didn't think I should live in a bubble, I shouldn't visit old-age homes and that if I went to a hospital, it should be because I needed to be there not because I was visiting someone.

My parents are older, so let's just hope they don't get ill…

Round No. 2 & Raclette

"I can do your shots," said my crazy French friend.

I'd asked her if she wanted to come over last night for dinner, but warned her that the reason was I wanted company, since it was the second time I'd be doing my Methotrexate and Enbrel shots on my own.

"I'll inject you," she said again when we talked on the phone at some point. The explanation for her enthusiasm: her dad's a retired doctor, and I think she thinks his skills have somehow worn off on her over time.

So last night she shows up at 7ish (those Europeans eat late). I'd had a not-great day at work. A colleague joked that I needed "topping up" with drugs. Maybe she was right. I have no clue why I was feeling particularly shaky. Was it because I was due for the next set of injections? Was it because I'd been achy in spots the last couple of days? My knees had been bothering me a bit, and then my legs just plain felt like jelly, almost as if the knee joints were really loose. Bizarre! Maybe it was simply because I hadn't been sleeping very well.

Anyway, I left work, reviewed some copy I'd brought back home with me, then just laid down and read a book till CFF (crazy French friend) arrived, since it was too late to take a nap.

When I started getting ready for the shots, once again, she said, "I can do that if you want!"

I declined and said it's OK and did the Methotrexate one. Then, while we were waiting for the Enbrel syringe to reach room temp, she admitted, "Actually I'm not very good with needles."

"Now, you say that!" I exclaimed.

"But it's OK, it's you they're going into! If it was me it would be different!" she said. "But I felt a little funny while you were pushing that in."

"Great," I said. "Last week Tracey was here and she had said she might faint while I was doing it, but she was fine and sat there while I was doing the whole thing. You kept saying you wanted to do the shots, then it turns out you'd be the one to pass out and end up on the floor right when I have a needle stuck in me and can't do anything!"

Lord! My crazy French friend!

Actually the real reason she came over is because she never fails to make me laugh – and so we could have raclette. She has a raclette machine (pictured below). It's essentially a small grill. You cook vegetables or shrimp, etc., on it, and under the grill you slide little trays loaded up with raclette cheese (or other types according to taste) to melt. Yummy and supereasy!

And another reason behind the raclette and the company? To distract me from the injections. I don't really have a problem with them, but they still make my heart race a bit, nonetheless. Takes some getting used to, injecting yourself...

 

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!!!

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...

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?

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.

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...

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.