Posts tagged Avonex
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Today we all traipsed off to the GP so leigh and hunter could see her. Hunter’s been complaining of her ears hurting from time to time, and leigh needs six-monthly blood tests to check her liver function (which can be impaired thanks to our friend Avonex).
I would have added myself to the appointments list if I could have, because I seem to be getting conjunctivitis (nice) and my eye was getting redder and redder, but by the time I realised how bad it looked there were another 10 or so people waiting and frankly, conjunctivitis sounds more inviting than an additional hour or two at the clinic. We were there over two hours as it was.
It turns out that both of Hunter’s ear drums are red and inflamed. I’m a little concerned, because in addition the bit of pain, Hunter’s hearing has definitely been affected. Leigh and I have both noticed lately that she either asks us to repeat things time and again, or just doesn’t hear us at all.
The doctor sent us home with antibiotics (which she thought was justified since both ears were affected) and we’re also to give hunter Demazin nightly for five nights to see if that helps – the GP thinks the problem is possibly at the nasal end of the eustachian tube and the Demazin could help clear things out.
We go back next Tuesday and if it hasn’t cleared up, we’re off to an ENT specialist, but I really hope the antibiotics do the trick. The prospect of there being a longer term hearing issue is just not that appealing.
Leigh will get her results next week too but we’re not expecting anything to worry about since she feels fine.
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Leigh had her first Avonex injection yesterday and it was far more upsetting and traumatic than either of us anticipated.
I think a large part of that was the realisation (again – must this hit us so hard and so frequently??) that this is a serious disease and that it’s going to be a big part of our lives from now on. The need to start medication came much sooner than we expected and it’s all scary and overwhelming and just bloody awful.
On top of that is the fact that she has to self-inject. I know lots of people who have had to jab themselves with various fertility drugs but it’s not quite the same. I mean, mechanically, it’s the same, but psychologically it’s not. You don’t take fertility drugs forever, and it’s fairly clear whether or not they’re helping. You’re not afraid that if they don’t work you might end up unable to walk or see or feed yourself.
Having to inject it herself feels like a huge burden of responsibility. I can almost hear the voice in her head – ‘your future health depends on you getting your act together and injecting that drug’.
The other thing that took us by surprise was the extent of leigh’s needle-phobia. We knew she was a bit scared and wasn’t going to enjoy it, but I think we both underestimated how she’d react when it actually came to the crunch.
The nurse went through the process with her with a training kit – injecting water into a block of high density foam. And then it was time for leigh to do the real thing. I feel nervous and nauseous just thinking about it.
She kept preparing herself, almost doing it, then backing out at the last instant. At one stage she put down the syringe and put her head in her hands, saying “I don’t think I can do this”. I felt useless. Leigh is such a bull-by-the-horns person. It was awful to see her so defeated by this.
Hugo was tired and cranky and I was trying to be there for leigh but he was so distracting that I ended up having to leave the room and get him to bed. I was gone for about 10 minutes and when I got back she’d managed to go through with it, but was in bad shape.
She was ashen and slick with sweat and looked like she was about to pass out. The nurse had given her a glass of water and we took her to the couch where she sat, pale, nauseous and shaky, for the next half hour.
She’s already really stressed about the prospect of having to do this again next week – and the week after, and the week after, and the week after…
She has lots of other options (go to the clinic and have a nurse give it, have me give it, switch to one of the other meds which are delivered sub-cutaneously) but she seems to be viewing this as a test of her own fortitude. She feels obliged to stick with this medication and to get better at injecting herself, come hell or high water.
I feel like she should try it for the next couple of weeks and see how she goes. If it’s going to be this difficult and upsetting, I think we should consider the alternatives. I don’t want this hanging constantly over her head, it’s too much stress.
Meanwhile, I think she’ll be changing neurologists. I was very unhappy with hers the one time I met him (diagnosis day). He was blunt and totally without compassion, and also not very interested in giving us information, advice or options. When he started leigh on the medication, he told her with luck it’d all go well and he wouldn’t have to see her again for 10 years. He didn’t even mention the fact that she’d need frequent monitoring because Avonex can affect liver function, among other things.
The MS Society nurse (who was utterly fantastic and a very welcome source of calm guidance) is not allowed to give recommendations or share opinions about neuros, but she couldn’t hide her shock when I told her the neuro said he may not need to see leigh for 10 years.
She said, “All I can say is that we recommend you see your neuro at least every six months, and that you are always entitled to a second opinion”. We’re going to try to get an appointment at the MS clinic in camperdown – the neuros are up to date on the latest developments, involved in research and actually interested in their patients’ welfare. And they bulk bill.
The sliver of good news from yesterday is that the side effects weren’t too bad. Leigh started feeling fatigued and a bit achy after a few hours and then was feverish the rest of the night, and woke still hot and a little headachy this morning, but she was okay to go to school. On the nurse’s instructions she’d taken two panadol before the injection then two long-acting panadol before bed, and they seem to have helped.
She was on a half dose this week and will be next week, too. The following two weeks she’ll take a 3/4 dose before graduating to the full dose. We’re hoping the side effects won’t increase with the dosage.
I really don’t know how next week will go. This week was such an awful shock that I think the psychological barrier might be even tougher to overcome next week.
We have a nurse from the MS Society coming to visit next Wednesday.
It really feels so shite to write that. MS Society and us in the same sentence. It doesn’t seem right and it certainly doesn’t seem fair. But I digress.
She’s coming to talk with us about getting leigh started on the Avonex. We have quite a few questions and some concerns, mainly about dealing with the side effects.
We know not everyone has them, but we are trying to plan for the worst. The current plan is for leigh to self-inject before she goes to bed on Saturday night. She’ll take a long-acting analgesic at the same time and we’re hoping she’ll be able to sleep through the worst of it. And if she still feels crappy the next day (a definite possibility) then at least she won’t have work to contend with.
If the crappiness lasts longer then we’ll have to reconsider. Leigh doesn’t want to ruin our entire weekend by feeling terrible all the time, but it might not be practical for her to be trying to work while she’s dealing with side effects, either. So it’s a bit of wait and see on that one.
The nurse will give the first injection (or maybe help leigh to give it; we’re not really sure) on wednesday, which will obviously impact our shoot-up-on-saturday plan. We’re thinking she could do it Wednesday this week, Thursday next, Friday the one after and then be at Saturday by the fourth week, but we’ll discuss that with the nurse.
We’re also not sure how to gauge the side effects because she’ll be starting at a lower dose and graduating to a full dose over time.
What I’d really like is for Leigh to be one of the lucky ones who get no side effects, but luck hasn’t been that fabulous to us so far.
So, as you might all know, Leigh was diagnosed with MS late last year. A huge shock and something my mind is still struggling with – I keep trying to mentally rewind and just undo that day, and then I remember that it actually happened and can’t be undone; and then I spend a few minutes trying to process the reality, but it’s too hard, so I put it back in its box and leave it for a few days.
Over Christmas Leigh had some return symptoms. Some weakness and numbness on her right side, like before, mostly. More recently she’s had a burning sensation in her right arm and leg, and, more worryingly, some numbness in her left leg. Her left leg hasn’t been affected before now.
They’re all minor symptoms but each thing is a reminder of this intruder into our lives, and each one brings me fear for the future we might get and grief over the loss of the future we thought we had. Recently I learned that the partner of someone I know, who also has MS, needs to catheterise herself. I *know* continence issues are common in people with MS, but this was such a slap in the face. This could happen to us. Worse could happen to us.
That’s the worst thing about MS. It’s totally unpredictable. There’s no way to know whether Leigh will be one of the ones who never becomes severely impacted, or if she’ll be the worst case scenario, unable to walk, dress, feed herself. I crave stability, and yet I know we’ll never have it again. I worry about who will mow the lawn if leigh can’t. I worry about who will pay the mortgage. I worry about everything, and a little bit of numbness in one leg petrifies me.
Today Leigh went back to the neurologist and he agreed she should start medication. He’s prescribed Avonex, a disease-modifying drug that is delivered by a weekly intra-muscular injection. It is not a cure. It will not undo any damage already done. And for some people it doesn’t work at all.
But for a lot of people, it slows the rate at which the lesions develop and it’s those little f*ckers that cause the problems – they interrupt the messages from brain to body so that a perfectly fit and well body can’t function properly because it’s not getting the instruction it needs.
The medication is known to be pretty nasty for a lot of people. It often causes flu-like symptoms which for many people are worse than the symptoms of the disease.
Leigh wasn’t sure she really wanted to be on the medication. She said she doesn’t feel unwell ‘enough’. I said that was exactly why I wanted her on it. I want to slow this thing down as much as we can in the hope that she *never* becomes severely debilitated.
So, I am glad she’s getting the meds. And sad, too. Because this is real, and it’s never going away.