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Pick Your Poison

2 October 2015

When I was diagnosed with MS, as a nurse there was no question in my mind whether or not to have active treatment. For me it was a no brainer. I'd seen people in hospital with MS, mostly progressive or advanced and it scared me. It was something I never wanted to deal with. If I could have access to a drug that  could slow the progression, I was all for it.

 
Well three years into active treatment, I'm onto my second treatment option. My first was Copaxone 20mg daily injections, which I did for two years. Whilst I admit I had no major relapses, I'm pretty sure I had several small ones. Injecting myself wasn't an issue, I had no trouble doing this at all. I'm lucky to not be needle phobic, however the injection site reactions were horrendous.  Big lumps of red, hot and very painful swelling. Itchiness the next day, lasting until the  lumps subsided, sometimes a few weeks. Even this I could put up with but I felt like crap. I couldn't remember feeling so sick ever. I ended up getting this severe joint pain in my hands. I could hardly pick anything up. I discussed this with my neurologist who dismissed it as arthritis. Anyway long story short, my treatment ended up changing to Tecfidera. Amazingly, by about three weeks with no Copaxone, my hands went back to normal and have been for nearly a year. So the question remains in my mind, did the Copaxone cause this? I'm pretty sure it did but who knows for sure?
 
Now Tecfidera is a whole different ball game. For a start it is not an injection.  It is a tablet taken twice daily. You start on 120mg twice daily for a week, then increase to 240 mg twice Daily. Side effects galore for me.  Excruciating abdominal pain, flushing in varying degrees, diarrhea, nausea. These gradually subside unless you forget to take a dose, then it's right back to where you started from, well it is for me anyway. 
 
Now since I have started taking this medication, I have been nothing but sick, especially this autumn/winter. It certainly does lower your bodies ability to fight off any nasty bugs. Apparently I can get severe infections, although I read, these are rarely fatal. Awesome! I have no sick leave left until next February. Not very happy about this. It's pretty hard for me to avoid sick people. I work in a hospital. Wash your hands, they say. All I do is wash my hands. I feel like Lady bloody Macbeth! I want to wear a full quarantine suit.
 
Since starting my disease modifying treatments, I feel my health slipping away. I feel like a sick person. I rarely feel well. I can count on my fingers and toes how many days I've felt really OK since starting this course of action.
 
Now for the part you know is coming. What do I do? Do I stop my active treatment in the hope I will feel well again and risk a catastrophic relapse? I don't know? In my heart and mind I know I need to be on this pathway but I want to feel well and not sick, which is unfortunately how I feel currently. Maybe there will be a disease modifying treatment that does suit me out there somewhere.
 
I'm sure these medications that are supposed to be helping are slowly poisoning my body. Stuffing up my liver and kidney function bit by bit. I've had both my brain and spine MRIs this week, Neurologist appointment next week.  I guess they will tell the story of whether Tecfidera is working for me or not? I've  been so sick with this and that,  I can't say whether or not I've had relapses? When I'm sick all my MS symptoms appear and get way out of control. I've not had a decent period of being well to determine what's what.  I'm sure at my neurologist appointment I will be asking to change my poison and fervently wish the next one is a little kinder to me. 
 
Pick your Poison Rebecca, pick you poison.
 
 

Comments (12)

Much love Bec! Beautifully written and very insightful! xx

What a tremendous job you have done Rebecca of outlining the dreadful choice that faces us as PWMS and whether we accept or decline drug treatments. It's a tough one, and I can only hope your MRI's come back with heartening news and that you find a path with which you can feel comfortable.

Thanks Lawrie, it is a hard choice. I'm hoping there is some treatment out there that will make me feel semi normal? Here's hoping. :)

I second all that Lawrie says! Well put, I hope you get good news on your MRI, and I really hope there is a treatment option out there that suits you better. I wonder if it would be helpful for your neurologist to read what you wrote above before they see you? Maybe it would help them understand just how badly you are feeling right now, even if your results may be fine? Good luck!

After 2 years since official diagnosis and almost 12 years since "You probably have MS, Any questions?" I am now contemplating DMD's. They have never been offered to me. You paint a picture that does not entice me to start but rather play Russian roulette with chance. Also working in a hospital with really sick patients. It is a month and a half since this blog, I wonder if you have changed meds and how that MRI went. Thank you for your brutally honest blog.

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