Posts Tagged ‘Humira’

So, Monday May 25th wasn’t a good day. I was diagnosed with vasculitis, and immediately hospitalised. In a state of shock, as I’ve never had to stay in hospital before. I absolutely freaked out. Had no idea of what vasculitis was or what it’d, or could, do to me. On day three I worked up the courage to ask the doctor if it could kill me, which she said it wouldn’t. Phew.

Vasculitis or chicken pox?

Vasculitis or chicken pox?

I was in hospital for three days, and then sent home on sick leave the rest of the week. The vasculitis was looking better. On the Saturday, six days later, I took my weekly shot of Humira. I shouldn’t have ūüė¶ It said BOOM, and I had a much worse case of vasculitis from then on. I couldn’t wear shoes for six weeks because of external bleedings on my feet, heels and lower legs. It hurt like hell. It was the worst thing I’ve ever experienced.

It turned out I’d developed an allergy to Humira. After 8 years. Fascinating. So what I had was an allergic vasculitis, which I’ve come to understand is one of the “better” forms to get. Lucky me.

Naturally, that was the last shot of Humira in my life, and I couldn’t start any new medication until the vasculitis was entirely gone. This, it would turn out, would not be anytime soon.


Owie. I couldn’t wear shoes for 6 wks.

And in turn, this meant that my arthritis, which I’ve medicated for the last 20 years, was now for the first time going untreated. And apparently it responded by hollering “field trip!” and going nuts. It’s been rough. My knees have needed to be drained/tapped almost every 2-3 weeks, on average!, sometimes even more often. I’ve had 100 ml tapped on several occasions.

I’ve had my knees tapped by seven doctors, in two different countries and at three different clinics since June.

And after tapping the knee of joint fluids comes the cortisone injection. Or injections, I should say, beacause on several occasions I’ve had to have both knees tapped at the same time. There’s been a lot of cortisone. Both as injections and pills. I love one and hate one.

I’ve been on Prednisolone, cortisone pills, somewhere between 10 and 30 mg up until last week when I finally came back down to 5 mg. I’ve gained 10 kgs (20 lbs) since early June, and don’t recognize myself in the mirror. I hate it.

On August 10th my ordinary doc deemed the vasculitis finally gone, and I started treatment with Enbrel. It lasted all of three weeks before the vasculitis was back. Dammit.

So, back off meds, and upitty-up with the cortisone level. Again. Six weeks later I started taking Roactemra. We had to try something. It’s estimated to take 2-3 months for it to “kick in” and work its magic, and I’m only six weeks into it yet, so still waiting to see. And hoping of course.

Things din’t go so smoothly though, I was hospitalised again in early October when I realized, and admitted to myself, that I couldn’t manage on my own at home. When hubby was at work I couldn’t, for example, get up from the loo on my own. That’s defeat, let me tell you. The knees just didn’t work. I couldn’t bend them, and I couldn’t stretch them out. They were “locked” in a position that made me unable to walk, sleep or do anything. Like getting up from the loo. I took a lot of morphine to cope.

The doc I had at the hospital the second time around was great, though stern. He also put me back on cytotoxins that I haven’t taken for five years, as we’ve been trying to get pregnant. But now that hope is permanently gone. ūüė¶ Boo. Still waiting for them to kick in too.

So, here’s hoping for a great Christmas, winter and 2016! It could only get better, health wise, and 2016 is really going to OUR year!

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This quote by my doctor may well be true, but fact remains that it was also the cortisone that enabled me to walk during my holiday. I was back at my doc’s office today, some six weeks after my last appointment; the one I thought would sort me for the holiday. She looked saddened when I told her of all the medicines I’d taken during the five weeks I’d been away, and said she definitely understood why my cheeks were round if I’d taken that much cortisone…

Today’s course of action was to drain the knee again (a Dr. Chris Maine drained it of 60 ml six days ago in Takanini, Auckland), as I’d developed a Baker’s Cyst at the back of the knee; another 60 ml was taken out before I was given a double cortisone injection straight to the knee. I’m no longer on any of the other anti inflammatory medicines, and sadly I’ve also taken my last shot of Enbrel. Yep, I have to go back on Humira ūüė¶ which you, if you remember the post One final shot, know¬†makes me quite sad.

I was told it could take anywhere between a few weeks, and up until Easter for my cortisone swelling to go down, so I’m glad to have a man that truly loves me in my life. In spite of my chipmunk cheeks.

She also said that although my reason for changing from Humira to Enbrel in the first place was to be able to conceive, it really wasn’t that big a difference, because in reality women stay on Humira all through their pregnancies. Hm. Well, if that’s the case – why did I change in the first place? And where does it say that it’s ok to do that? I don’t know… It’s just, the prospect of going off all meds, shots included, well, it¬†doesn’t seem all that appealing after these last five weeks. We’ll see how it goes. It’s not in the cards for the next couple of years anyway, so I guess I’ll deal with that¬†hurdle when I get to it, eh? Fingers crossed Humira will get me back in order though, eh!?

Shit! I wrote this post yesterday, but last night – when I should’ve been sleeping – I remembered that last time I started Humira, some four years ago, I gained 7 kgs in five weeks. Five weeks! Let’s keep our fingers crossed that don’t happen again, shall we?

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And even though that gives me a reason, something to blame, I’m not happy about it. It turns out¬†Enbrel, my new medicine, has the glorious side effect of weight gain. Which is, like, exactly the opposite of what I want after my success diet in the spring. Not impressed. At all. When I started with Humira some 3,5 years ago, I rapidly gained 7 kgs – seriously, they came out of nowhere!, which I reported to my Doc. She said she’d never heard of that side effect before, but took note of it and reported it to the authorities (?). Well, it seems a lot more people have had the same problem, as it’s now a well known side effect. Damn. I hate this shit – just as I’m doing really well, and things are going “my” way, something always kicks my feet out from under me ūüė¶ I’m so bummed.

I’m still jogging and doing pilates whenever I can¬†squeeze it in during lunch, so I’m keeping up “the good work” in that aspect, but I suppose the darker and shorter days are making me somewhat less motivated in terms of my diet. Which of course doesn’t help. Sigh. It’s a constant struggle, my life, I’ll tell you. And as if all that wasn’t enough I have to go to Romania – for four days! For work. Including the weekend. Not fair…

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Of Humira, that is. After almost 3,5 years of taking Humira shots every fortnight, I’m about to shift over to Enbrel. It’s exciting, yet frightening. My reason for changing my meds is that which I described in “This is a happy day” – I could conceive while on Enbrel, but not on Humira. And even though I don’t have any plans on doing that anytime soon, I want to know that the option is there, once the time comes.

Enbrel vs. Humira - syringes vs. click-pens...

However, there are no guarantees that Enbrel will work as well for me as Humira has done, and somehow I totally forgot about that aspect. It didn’t occur to me that they’d have different effects. They are both so called biologics, i.e.¬†genetically engineered proteins derived from human genes. Ha! And to think I’m against GMOs…

They both work by blocking a chemical activator of inflammation called tumor necrosis factor;¬†so called¬†TNF-alfa blockers. And they’re expensive as heck. I just picked up four Enbrel shots, and they were SEK 11 000. That’s 1 500 USD, 1 600 AUD/CAD, 2 100 NZD, or 1 200 EUR. Crazy. Again I thank the lord for living in Sweden and our system of protection against too high costs. Mind you, we have a new health care plan at work, so I’d have my costs covered anyway, but still – geez. That was medicine for one month!

Drawback 1: I’m back to dealing with syringes again ūüė¶ The Humira came in a “click-pen”, but these puppies are syringes. Boo. Hopefully next month I’ll get Enbrel click-pens instead. It’s not that it’s difficult to take the shot, but it’s hard to force oneself to continue the injection when it really hurts. That’s where the click-pens come in handy. You just maintain pressure – there’s no precision action needed.

Drawback 2: Enbrel shots are taken every week. That means bringing one shot for each week when travelling, and they have to be kept cold – they should be stored in a refrigerator. Hm. Will be a bit tricky on my five week trip over the holidays when the first stop is Bali…

I sure hope Enbrel works, because Humira has worked wonders for me these last few years. However, my knee’s troubling me – again. It’s been slowly swelling the last 10 days or so,¬†and I realize it’s going to need emptying; it ain’t gonna go back to normal on its own. Unfortunately I couldn’t get an appointment to have it done until Sept 8th, so that’s another 10 days of semi-limping and no jogging. Not good. Even biking’s difficult – I have no strength in the left leg with which to push the pedal, I feel ridiculous. Oh well – that won’t bring this trooper down! The thought of Bali keeps me going ūüėČ

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I’ve just been to see my doctor, and I’m so happy! My doctor’s great, she’s easy to talk to, and she really listens. Today was my “3 year check-up” after starting treatment with¬†Humira¬†for my AS. Before I¬†started with¬†that treatment¬†though, we had tried adding Methotrexate – a form of cytotoxin – to my treatment with Salazopyrin, but it had little to no effect. So in April 2007, crazily enough already three years ago, I started giving myself shots in my stomach every fortnight, along with taking the cytotoxins weekly. Well – there’ll be no more of that! The cytotoxins that is. And this makes me deliriously happy! It’s such a relief, you have no idea…

This was me being crazy happy in 2003 - and the very way I feel today!

What difference it makes? Well, for one, I’m no longer killing any of my own cells. Also,¬†I’m now allowed to drink alcohol like a normal person, i.e. no¬†two glass limit like I’ve had in the years past. I mean, this has by no means been a big issue,¬†but¬†now I don’t even have to think and count and¬†plan for it. And, of course, the real kicker is that once the cytotoxins are out of my system completely – in 3-5 months – I can consider pregnancy. And this has me in tears. Happy tears.

For someone who’s biggest dream in life is to become a mother, being on medication that forbids you to take that step is disheartening, to say the least. Don’t get me wrong, I’m not in a panic to have kids (yet), but knowing that it’ll now¬†be “easier” once it’s time sure feels great. There’s not enough research on what Humira does to a foetus, so the recommendation is to stop taking shots some five months prior to conceiving, however the alternative shot one can take, Enbrel, is apparently better. According to my Doc, I’d be able to take Enbrel up until conception, and then stop. So, as you can understand, I’m very happy with this change in medication – it feels like victory (and I’m having bubbles tonight to celebrate it!)!

Besides that, we decided my tonsils are staying (doh!), at least for now, and my left knee was once again emptied (52 ml this time) and given a cortisone shot. Feels better already! I’m happy, happy, happy!

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Yeah, so you all know I have arthritis, right? I have¬†a form called AS (Bechterew’s), and though it’s “supposed” to give me problems in my lower back, I’ve mainly had problems with my knees over the years. For this I medicate with Humira and Methotrexate, and take Naproxen for pain relief whenever necessary. Which, luckily, is extremely rare these days.

However, the wonderful tonsillitis I so cherished and enjoyed ten days ago (and which decided to make a comeback on Sunday night – yay!), is apparently just the type to set off the bacteria (was that what she said!?) that then causes inflammations in joints. So wow – a double whammy! Oh well, it’s not like I haven’t been through it before. Countless times. “Been through what?” I hear you ask. Having the knee drained and given a cortisone shot. The pics of it aren’t for the faint-hearted…you have been warned.

Before - very swollen and hard to bend, after - great relief after draining 30 ml!

So, starting sometime last week I could sense my knee swelling, a feeling I know all too well. Sometimes it goes away by itself, but by Sunday night I knew I’d have to call my Doctor and get some help with relieving the pressure. I was lucky enough to get an appointment today, and was there right after lunch.¬† We (ok, I didn’t do much) drained it of 30 ml of “joint fluid” which, as you can tell, was a bit yellow and gooey. I’ve had more than 100 ml emptied in one go before and then it was much more clear and¬†runny. Apparently it looks like it did today when it’s in the beginning of an inflammation. I’ve also had pea green fluid drained from my knee, but that’s a whole other story…

But yeah, so one shot goes in to first numb the knee a bit, then we drain it, and then we inject cortisone. My doctor, Anna, is brilliant, but it was the first time she’d ever had anyone take pictures of the procedure, so she laughed and admitted that she was a bit nervous! Now the doctor’s orders are to rest and not let the band-aid get wet for 24 hrs. Luckily for me there’s Champions League football on tonight, so couch – here I come!

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Let’s see if I can break my record from last year with four bouts of tonsillitis in 6 months, shall we?! First¬†bout of¬†2010 hit yesterday afternoon – out of nowhere! I just¬†got a sore throat, which always makes me a little nervous, considering my track record, and decided to make a veggie soup with ginger – shocka bocka full of vitamin C. Said and done, I did, and rounded it off with some ice-cream (Ben & Jerry’s ‘Fairly Nuts’ is to die for), before hitting the penicillin before bed. Didn’t help though ūüė¶ At 3 am I was wide awake, somewhat feverish, with a splitting headache. Boo. So up for painkillers and soothers, and I made the decision not to go to work then already. By the time my alarm went off, at 6:40 am, my head hurt just standing up. Called my boss and the two people I had meetings with and went back to bed. Boss woke me up when she called at 10 am, she’d missed my message and wondered how I was doing (it’d be very unlike me to not call and let her know I wasn’t coming in).

Boy, does it ever hurt. Are the white spots supposed to continue growing?

What I don’t get is why they make penicillin pills/tablets so freaking huge? I mean, my throat is practically swollen shut, and I’m supposed to swallow something the size of a baby finger?! Geez… Add to that the two painkillers and the daily anti herpes pill I take, and it’s quite a painful cocktail I gulp down. The herpes? Yeah, not that kind, I just get cold sores on my upper lip, chin, and if I’m real lucky (sarcasm) in my nose. Had it last week – yay – not. It’s just that with my meds, especially Humira which knocks out my immune system, I get it all the time if I don’t medicate. But it¬†can be¬†a funny one to explain, seeing as I have them on my kitchen table to ensure I remember to take it every morning. In the past¬†I learnt the hard way to¬†“hide” them when expecting company (especially if¬†it’s a med student visiting for…uhm, what’d we call it? coffee?…oops).

I’ve been unusually lucky today though – there was actually XC skiing on telly around noon, so I could stay in bed and finish the ice-cream while enjoying that! But¬†on all accounts, it really does suck ūüė¶ Having tonsillitis means you can’t kiss, or at least that you shouldn’t, and if¬†I with my usual luck also contract another type of infection, like I kept doing last year, there are other things you really oughtn’t be doing either. Sigh. And typically just in time for the weekend too. I probably won’t go to the football tomorrow, and I’m a little worried about going to see mom on Sunday since I don’t want her to catch it just a few days before they head to China… Okay, time to stop whining and get on tea duty. I add some fresh grated ginger to it – potent stuff!

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