I’m waiting to start Tysabri so at my check up with the hospital last week they told me to stop Rebif straight away. I’ve had a look online and it seems there are no issues with stopping just like that. I had my last injection last Monday evening.
Friday night, in the early hours, I woke up with really painful stomach ache. Not stomach ache as such, more of a dull constant pain and a feeling of pressure or of being bloated. Made me feel a little sickly too. I’ve had this 3 nights out of the last 5 and only eating very small amounts seems to help. The few days in between that I felt OK I went back to eating normally then woke up again that night. It’s that uncomfortable it’s kept me awake for around 3 or 4 hours so I’m pretty shattered at the mo!
I’m not pointing the finger at the Rebif but I’ve always had to take 2 400mg Ibuprofen with my injection as I always got fluey side effects and I’ve obviously stopped taking them too. We all know Ibuprofen’s not great for your stomach so could it be related to that or just a random coincidence? I’ve been taking that dose of Ibuprofen for around 6 and a half years so it must be quiet a shock to my system to all of a sudden not have it!
It’d be interesting to know if anyone else has experienced a similar thing when they’ve stopped either DMD’s or the other drugs we have to take because of them xx
I came off Rebif with no trouble at all. I expected some kind of withdrawal symptoms, but was pleasantly surprised. In fact I felt better than I had for a long time as the evil headaches I’d been getting just stopped, and have never returned. I didn’t get the fluey effects, just those hellish headaches, which was why I decided to come off in the first place, so a good outcome. I’ve not been on a DMD since then, nearly three years, and in that time have had just one relapse. However, we each of us react differently to drugs, and each have our own MS, so others may have a different tale to tell.
Why not have a word wth your GP about the stomach problems, there’s no need to suffer in silence.
random coincidence more than likely but if it keeps up, better to go to a GP to rule out anything major. could just be a bit of a stomach bug or you could have developed an intolerance to something you are eating. Intolerance/allergies can happen very fast and very suddenly.
Thanks everyone. I’ve been having really plain food the last two days, small amounts of soup and a slice of plain bread, and I’ve had two good nights too. Maybe it was just a complete random coincidence!
I might be a little more adventurous on the food front today. I’m supposed to be going to my parents tomorrow night for a Chinese for mine and my Dads birthdays and have been looking forward to it. Will be properly miffed if I can’t have my usual chicken curry!
I was diagnosed with MS at the age of 18 (I felt the symptoms much earlier as a child yet didn’t know how to articulate them). I’m now in my early 40’s and held off from taking any drugs for nearly 20 years. Then, one day I simply couldn’t move. I knew I had to do something as I had a young family depending on me. It was recommended I seriously give Rebif a try. So, as scared as I was, I started off on my self injecting adventure. I hated everything about it…the headaches, the fluey symptoms, the sore and inflamed injection sites. Then, in August of 2016, I was advised that my routine blood work displayed signs of this negatively affecting me. I’m now anaemic. So, after having been on Rebif for 3 years, I’ve now stopped taking it. It was recommended that I fill the void by taking Copaxon and, to be honest, I’ve not given it an honest go. I’m just making the most of no longer being dependent on anything. Plus, I’m simply nervous with starting up this process all over again. I had no issues with coming off Rebif and have been off for about 6 months now. I feel better then I ever did while on the drug. I can walk further than I could before and I’ve more energy. I’m now worried that this dream I’m living is just that, a dream, and one day soon my health will all come crashing down. I really don’t know what to do and wondering if there’s anyone else out there that’s found themselves in the same situation?