Rebif - enemy or not?

When beginning Rebif there is a titration period. Ladies and gentlemen, this has nothing to do with tits. It means that you begin on a lower dose and gradually make your way up to the full dosage over several weeks. The machine takes care of the injection amounts during this titration period.

So Monday afternoon arrives and it's time for me to stab myself in one of the suggested sites. Tops of the thighs, stomach (upper and lower), back of the arm (awkward and haven't been there yet) or on top of the bot bot (bottom - too difficult to do alone).

I prepare myself with all the bits and pieces I need. The Rebismart machine, needle, needle disposal thing, cotton wipe, Witch Hazel and the cool pack. I gather all these and take a seat on the couch. I place the cool pack on my right thigh and lay down for a while. It's all good. I am calm. Diabetics do this stuff all the time!

I nervously follow the prompts on the machine and do everything slowly, calmly and carefully........I inject. Pft! That didn't even hurt! Awesome. Great! No pain really, just the feeling of the needle going in and coming out but it was so quick and easy. I can do this forever! No worries.

I took some panadol as suggested, to avoid the cold and flu like symptoms.

And there you have it.

As I go through the titration period, I get brave and stop taking panadol. After all, I need to make sure I don't give my liver too much work, and taking panadol (paracetamol) 3 times a week isn't really a habit I want to give in to. I got no cold and flu symptoms and reported this back to Karen. She was really pleased.

I get up to the full dose of Rebif and it does take a bit longer now to inject, and it can sting a little when it is going in, but really I feel so confident about this drug. I have had none of the side effects related to cold and flu, just some redness and itchiness around the injection sites. Nothing I can't handle! Or so it seemed...

I take my medication every Monday, Tuesday and Wednesday evenings. One Wednesday evening, I went about my Rebif routine.

Come 9pm, I start feeling feverish. Oh great, I am getting sick. This sucks. I haven't been sick for ages! Mid-week too. And Thursdays at work are hectic, two doubles of year 9s. It's okay. I will drink lots of water and OJ (do your stuff Vit C) and get to bed early so my body can fight it off before it really begins.

I get to bed. I get worse. Sweating. Shivers. Cold. Hot. Sheet on. Sheet off. Air con on. Air con off. I'm getting worse. Weird dreams too. Tossing and turning. Cannot get comfy. I convinced myself that I was getting bronchitis or something because I also had a sore throat.

I got up at some dark hour, and I SMSed work to say that I was getting sick and running a fever blah blah blah so I won't be in. I sat up and emailed some work through while I waited for the paracetamol to kick in.

I eventually got to sleep after my fever fizzled out.

I woke up.

I felt fine.

Yes, I did sleep in, this is true. But the sore throat was gone. No fever. Nothing. Just normal. I went to the doctor anyway, to at least get a medical certificate.

The doc confirmed, I had had my first cold and flu like symptom side effects from Rebif.

NOOOOOO! But I had come so far without ANY side effects. Why now? My relationship with Rebif was going great guns. This is stupid. Is it going to be that bad every time now? Well no Sascha, it's not. It is common for this to happen when on Rebif, particularly in the first 6 months of treatment, so relax would you? And think about all the stuff you have been told, and the things you have read, and don't freak out. Ok? Ok.

From then on, I did take paracetamol after my injection. It did ward off the cold and flu like side effects that I had experienced and I didn't have to take another day off work because of those symptoms. This was okay, expect I worried about my liver. My regular blood tests (every 4-6 weeks) for liver function and blood cell count had been a bit up here and there. The blood counts were fine, but the liver function was not great, but nothing to panic about as it is expected that they rise while my body gets used to the drug, Rebif.

I was a bit angry with my body for not accepting Rebif. I did not want to have to try some other drug. This played on my mind a lot. And every time I got each of my blood tests back, I got nervous. I googled stuff (Yup, still haven't learnt to stop that). But I was also having my results faxed to Dr S, and I thought, well, if he was concerned, he would call. He had called once before after my first blood test since starting Rebif. I didn't get a chance to talk to him, but he left a message to say that I should keep going and that he was not concerned. This gave me some relief, but not enough. Probably because the GP I was seeing was freaking out. "I am concerned" she said. Well alright. You know Dr S is getting my results too and he hasn't called, so I am sure it's fine. Hang on. Shouldn't she be the one saying this to me? Oh fuck I don't know.

Sorry, I am realising what a long post this is. Oh well. Thanks for stickin' around!

I got to a point where I really wanted to stop taking paracetamol after every injection. So I stopped. And to my surprise, some nights I got no reaction, but unfortunately others I would feel like 2 day old dog poo stuck in the crevices of a smelly wet boot. Not only do I have this unpredictable illness, but the medication I am on for it is also unpredictable. Help me universe!

I did suffer through some awful nights of fever and sweats and chills etc, but others, I felt normal.

I also cut down on my drinking of alcohol a lot. Actually, being in D-Town with the weather how it is (hot - ALL the time), drinking was not really something that I wanted to do, unless I was guaranteed the best air conditioning conditions. But it was also because, again, I did not want my liver to become a workaholic and crash.

My results from the blood tests were still coming back elevated.

The doc referred me to a Haematologist.