Well it’s been a tough week here in Warrior Towers, mainly because Rebif and I just don’t get along at all!
I have been injecting 3 times per week, following advice about keeping hydrated and experimenting with timing, but rather than the severity of the side effects easing up, they have actually got worse. By last Friday morning I was throwing up and by Monday was overwhelmed with continuous nausea, fatigue and headache and was unable to work. I was barely sleeping and was also peeing blood! (Apologies to squeamish readers!)
By Tuesday evening, when my next injection was due, I decided not to carry on. My MS Nurse isn’t pleased but understood when I explained how I was struggling to function. She tells me such reactions are unusual, however, fellow patients tell a different story. There are some patients who sail through, with few or no side effects and feel great on Rebif. But there are quite a few just like me, who are unable to tolerate it at all.
Further research has revealed a known link between Rebif and UTI (Urinary Tract Infection) with higher incidence in females and those in the 45 to 60 age bracket. I now seem to be more knowledgeable than the nurse!
I was never planning to take Rebif as a long term measure but was hoping that it might hold off another relapse until I can access HSCT. When I saw my neurologist in June, he predicted I would have another relapse “soon”, so I’m keen to do all I can to avoid this.
Five days after my last injection I’m now feeling much better. My sleep has improved and today was the first morning in a while that I haven’t felt sick on waking. The antibiotics are kicking in and I’m feeling a little less foggy headed!
So now I’m left with a difficult decision – do I wait a bit then try again, do I try another drug or do I just do my best to look after myself in the hope that I won’t relapse before I have HSCT?
If you have any thoughts on this, let me know in the comments below 👇🏻
So sorry you’ve had such a tough week. Such a shame it wasn’t right for you. For what it’s worth, I’d give something else a try – you never know what might work. You ARE a warrior, so battle on!
Thank you Anne.
I’m definitely going to give myself a little break then decide (hoping that an obvious answer comes to me in that time!)
Gosh those are horrid side effects. Thinking of you. Always read your posts and we’re all cheering for you xx
Thankfully I’m feeling so much better now and have caught up with sleep over the weekend, which is a big help More docs appointments this week. I’m feeling slightly guilty that ther is about £500 worth of medication in my fridge that I’m not going to use!
Thank you for your support as always Gill, Jimmy, Anna and Zeb (and William!)
Xxx