I think this is such a common thing Catherine. You go along thinking that you’re just fine and then a little thing will set off all your sad feelings. Don’t worry - it’s normal. You are still you though, that won’t change! Hang in there - time will make it easier to cope with! Teresa xx
Thanks everyone. Karen…have ordered paracetamol in the shopping tomorrow !! Teresa…I really do feel sad and down…it catches you by surprise sometimes. Xx
I think when you look at your injections in the fridge it really hits home that there is no chance it was a mistake. This is really happening and its happening to me.
Everyone is nervous to start,at the end of the day its not normal to stick a needle in yourself—but rest assured it does quickly become normal.
Have you got your fridge thermometer aswell.
Ooh no…do I need one then ?
They are meant to be kept between 2 and 8 degrees so, unless your fridge has a reliable temperature guage, it’s best if you have a thermometer to make sure it’s OK. (Handy for checking out fridge temperatures when you’re travelling too.)
According to the Merck website, Rebif (like Copaxone) is fine at room temperature for up to 30 days, but this is supposed to be in one go, not a total of lots of little times above 8 degrees so I keep my fridge at 3 degrees - that way it never gets above 8 degrees no matter how often my hubby leaves the door open too long!
Just in case no one’s told you - always make sure your Rebif is at room temperature when you inject. So keep the spare cartridges in the fridge, but keep the Rebismart with the current cartridge in it out of the fridge. If I forget to take a new cartridge out of the fridge and I can’t wait for the cartridge to warm up naturally, I just hold it in my hand - not sure what a quick increase in temperature does to Rebif, but I get the same side effects, so I think it’s OK!
Thanks, Karen. I have just ordered one from fleeeebay and it promises next day delivery so it should be here tomorrow when I get back from the hospital. I will keep the cartridges in the garage fridge which rarely gets used except for storing booze and the rebismart in the living room next to my amytrip so I do them both at the same time…about 6pm. Does that sound right ? Xx
It’s probably best to pick a time that you know you will almost always be in the house and try to stick with that (use the alarm on the Rebismart since I’m guessing you’re keeping it somewhere you will be able to hear it at 6pm).
Timing is really personal though. I found injecting in the morning suits me better because Rebif gave me insomnia in the early days (it’s very rare so please don’t worry!). I also couldn’t sleep through the side effects and I really need a good night’s sleep! As the side effects have worn off a lot now (yahoo!), I can be more flexible with the timings. I often inject in the afternoon or early evening these days - as long as I’ve had two doses of paracetamol by bedtime, I’m fine. If for some reason I’m going to be too late for that, I leave it until the next morning. The only rule for Rebif timing is injecting at least 48 hours apart, so if you forget or are going to be too late one day because you’re going out or something, you can just inject the next day and switch your days around a bit until you get back into your normal routine (just like you’re doing when you start, to get onto Mon/Wed/Fri).
One thing - Rebif isn’t supposed to get over 25 degrees so make sure and keep the Rebismart away from fires and radiators and out of sunlight.
Ok…am stuck now…what would you recommend to start with…am off work still, so it doesn’t matter if I have the flu symptoms during the day. Would rather have a good nights sleep. Xx
I’d stick with 6pm if I were you. It might work beautifully! We’re all so different, there’s no way of knowing till you try it
Two paracetamol with the injection and then two at 10pm. Are you still up at 10pm if you are taking amitriptyline?
It might be worth trying no paracetamol - not everyone gets side effects (especially on the lower doses) and there’s no point in taking paracetamol when you don’t actually need to!
Yes, I agree. Especially with my elevated gamma gt level. Ok, I’m gonna do it at 6pm when I take amytrip…the sideboard is nowhere near the radiator or in the sunlight…and see how it goes. Thanks…again, Karen. Xx
What a melodramatic fool I am …nothing to it at all…in fact it hurts more when you have your finger pricked to check blood sugar levels !! And as yet, 6 hours later, a slight headache but very tired so more like a sleepy head and a kinda, I want to curl up under a blanket, feeling. So far, so good !! But thanks to everyone for their support and advice. Xx
Well done - glad it worked out better than you thought! Hope you continue to feel OK. Teresa xx
Really glad it went well!
Congratulations. Glad it went well for you. I’ll be joining you on Monday.
Hi welshboy Hope it’s as good for you.
I took my first injection yesterday. Not a problem. Wasn’t really bothered about the injection itself. No site reaction, so far. Did it in my left thigh. Right thigh on Wednesday.
Definitely had the flu like symptoms though but feel fine now after some Parecetamol.
Hi So an up date for those who asked. So far I have discovered that if I inject into my chocolate formed tummy or bum there is absolutely no sting at all but I get a red splodgey mark for a couple of days afterwards but if I inject into my mountain climbing formed thighs, it really hurts but there is no red splodge. So, I’m going to stick with rotating the four sites, two on bum and two on tummy. I’d rather have the splodges than the meddle feeling !! All in all happy days. Going well and so far pleased with choice. My first delivery arrived at home today and it is a veritable goody box…shoulder bag, cool bag, ice packs, screwdriver, spare batteries, travel sharps box, spare sharps box, transit sharps box, spare needles…every possible thing you could need. The only things I have bought are a fridge thermometer which was a couple of quid, some antiseptic wipes and some small plasters, although I have to say, the needles are so fine that I haven’t needed one yet. Ooh I also bought a tiny pair of tweezers coz I don’t seem to have the knack yet, of getting the needle back out of the device but the nurse said it happens sometimes and to just pull it out with tweezers. Xx
Good for you Mrs H. I don’t feel so good. Feel really down in the doldrums. I’m not sure if it is the Rebif or just plain old MS. I felt really good on Saturday, went for a walk and then went for a cycle. Oh well, I’m sure things will improve. I am glad that you are doing well.