Hi everyone its been a while since I’ve been on here due to a manic life. Anyway I started rebif yesterday morning, with my ms nurse, she told once the injection was done that I would have a few side effects in 4 hrs time, so I went home and rushed around the house, getting all the kids bits ready for today. So 3 hours later I started to feel weak and had abit of head pain, so I layed down on the sofa to rest. A few hrs later I had the worst pain in the world from top to bottom I was crying in pain, as everywhere was sore and hurting, even my ears and toes were hurting, I took all the pain killers I was told but nothing worked. I wanted to go to hospital as the pain got to much, but I didn’t in the end as my baby was under the weather, and I couldn’t leave him. I’m due my 2nd jab 2morrow, but this one is at night, nurse saids its better of a night coz u sleep through the pain, I have a baby that don’t sleep of a night, so I’m up with him every night. What am I ment to do about these side effects, and dose it get better with every injection, or stay the same for a while. I really want to do the dmds, but don’t know about theses side effects, I never dreamed it would be this bad after only one injection, I had three very young children, a job and look after my mums as and when I can, I can’t be this bad after every injection. Any advice would be a great help. Lisa
Hi lisa. I’m sorry to hear that, I started rabif 22mg in January 3times a week, iv never had any pain after injecting, the only thing that happened was I did it at 1st before bed, and couldn’t stand when I tried to get out of bed, ok after a while, this happened 3 times, so changed to morning, been ok, not sure they are doing anything at all, I’m sure I was better 2years ago before I was given any drugs??? (Wonder how many feel same)
I’ve been taking rebif or over 7 years, started on a low dose and worked up to a full dose. from what i can remember, side effects got better over the 2 weeks it took to increase the dose, but I always took it at night, so might not have really noticed any bad side effects. if the side effects keep up, talk to someone about maybe changing DMDs. They all effect everyone differently, some people have side effects, others dont, but from what I was told most side effects will fade over time.
Thankyou for your comments everyone, I just think I’m one of the unlucky ones as always.
Probably worth speaking to MS nurse about this one to be on the safe side. It’s always caused me some pain, but I’d check with her that the level you’re describing is acceptable. My side effects aren’t great, and yes - the pain can be bad, but the resulting reduced relapse rate and severity has been brilliant for me so totally worth it compared to the excruciating spasms I can get in a relapse. Relevant pain killers taken in advance help massively and seek to preempt some of the crappyness. The one piece of advice I’d give is the better ‘sleep’ you get the less time it hangs over in the morning. I found broken sleep, when I’m up with pain or was up with my daughter when she was little, wasn’t too bad but not enough sleep was awful with a nasty hang over the next day. So sleep early and as much as you can!