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Starting Rebif .... pooping myself now

Hi, I’m due to start Rebif Monday … feeling very nervous abd scared esp aa I pass out at needles and lie down for any injections, blood tests etc. I’m also worried about side effects … I have a three year old and so far my m.s has has no impact on caring for him even when I was relapsing … I don’t want him to see his mummy poorly if I get bad side effects. So that really scares me and I want to take care of him regardless. Not sure why I’m posting jusr looking for reassurance and advice I suppose. It’s weird as despite sensations and a weak left leg I feel well so feels weird going on something that might make me feel ill but I don’t want any more damage or relapses. Also what time do people inject their dmds and if your going on a night out wheb do you do it? I do have a few girls nights out and don’t want to stop them whilst I can still do them. Thanks guys xxx

Hi I can’t really help as in not yet at your stage, but just wanted to wish you good luck! I’ve narrowed down my choice to Rebif and Avonex and have to make the final choice for my appointment on Monday. I have exactly the same worries as you - my five year old and three year old come first, so I’m hoping side effects will be minimal but I’m expecting and planning for the worst! Will be interested to hear how you get on. X

PS not sure why that was anon!!

Hi Lisalou

I am not on Rebif now - but I was for over 2 years. Did you go for the rebi smart? That way you dont have to look at a needle at any point. I dont like needles - but I dont have a phobia about them. The injection is quick and painless, make sure its been out of the fridge for a while before you inject - if you do it at room temp, it wont sting. Side effects are different for everyone. I really struggled with them, got them bad. But, you will get to a point where you know what time of day the sidies will effect you less and it will just fit into your routine. Counteract them with paracetemol/ibuprofen. On injection days I used to start with the paracetemol/ibuprofen at about 3 in the afternoon and carry it on all evening. I would inject about 8pm. I learnt this was the best way to sleep through the side effects. I would go to bed with my hot water bottles, drugs and a drink and try and sleep it out.

All this was after I figured it out. I started injecting in the mornings - worst mistake. Work was just a nightmare. I suffered with the headaches and major chills - basically like flu.

Its scary at first, but I do think you will get to a point where it is part of your routine and you will be able to deal with it. You have to just try whatevr is going to suit you and your life the best.

Good good luck - its a horrid nerve racking time.

lots of love and positive thought sx

Hi Lisalou

I am not on Rebif now - but I was for over 2 years. Did you go for the rebi smart? That way you dont have to look at a needle at any point. I dont like needles - but I dont have a phobia about them. The injection is quick and painless, make sure its been out of the fridge for a while before you inject - if you do it at room temp, it wont sting. Side effects are different for everyone. I really struggled with them, got them bad. But, you will get to a point where you know what time of day the sidies will effect you less and it will just fit into your routine. Counteract them with paracetemol/ibuprofen. On injection days I used to start with the paracetemol/ibuprofen at about 3 in the afternoon and carry it on all evening. I would inject about 8pm. I learnt this was the best way to sleep through the side effects. I would go to bed with my hot water bottles, drugs and a drink and try and sleep it out.

All this was after I figured it out. I started injecting in the mornings - worst mistake. Work was just a nightmare. I suffered with the headaches and major chills - basically like flu.

Its scary at first, but I do think you will get to a point where it is part of your routine and you will be able to deal with it. You have to just try whatevr is going to suit you and your life the best.

Good good luck - its a horrid nerve racking time.

lots of love and positive thought sx

Hi The timing of it varies depending on how meds effects you. For me I injected two hours before bed as side effects hit me two hours after injecting but you may find different,you may have mild or no side effects at all. I have been a bit unlucky with side effects you just don’t know until you start. Try to be positive and think you will be lucky on them. You do have to give it a while because even if you do get some side effects they hopefully wear off after time. If they don’t then you can swop to a different DMD’s which is what I am having to do, so there are other options. Truly you can’t see needle if you have a rebismart. I am not looking forward to giving up my gadget it is sooo good. I shall look forward to seeing your post to say…it really was as easy as we have all said : ) Good luck Mish x

Hi

I was on Rebif for over a year. I used the Rebi-Smart machine where the needle was hidden and you can adjust the depth and speed of the injection to suit you. I’m not going to say it wasn’t painful because sometimes it was (but not very). Sometimes I hardly felt it at all. It did leave an itchy red blotch which took a few weeks to disappear (just in time for the next injection site rotation to come around). I wasn’t too bothered as long as it helped with the relapses. Unfortunately in my case it didn’t. I relapsed twice and I’m now on the oral drug Gilenya.

With regard to side effects, sometimes I experienced mild flu-like symptoms (headache, shivering, aching limbs) and sometimes they were quite bad, but most of the time they were bearable. I injected just before going to bed and took paracetamol and ibuprofen. Most of the time I slept through the the side effects, occasionally waking up in the middle of the night with a headache or aching limbs but they were gone by the morning (the side effects, not the limbs!). I would definitely recommend NOT injecting in the morning or before work. Bedtime is definitely best.

Good luck and I hope it works for you.

JZ

Hi I’m on rebif and would definitely say inject near bedtime. I’ve had negligible side effects but always do it at night just in case. Xx

hi, ive been on rebif now for about 18 months, i use the rebismart, you dont even see a needle its just straight forward to use. some injection sites are different as far as feeling it, just remember to rotate sites. and as for side effects, i take a ibuprofen a hour before i inject and inject just before bed and sleep most side effects off. there is plenty of support with rebif. So i suggest you dont panic until you start the injection.

Hi there, I’ve only been on rebif for 5 weeks and I’ve been very lucky so far with side effects. I take it that you’re going to be on titration from 8.8mcg then 22mcg and finally 44mcg. Strangely I had one night of really bad flu like effects on the 2nd night at the lowest doe and I thought OMG, what the hell am I going to be like at a higher dose. But I worked out that the best routine for me is to take 2 Amitriptyline at 8.00pm, Inject at 10.00pm and have 2 Ibuprofen 20/25 mins later. This has worked wonders and I really haven’t felt side effects since. I actually find that the injections hurt far more than the Copaxone ( had that for 5 months ) and unfortunately, I seem to really feel the needle going in but that’s more in my leg and hip area and I would say that the majority of people don’t feel much at all. Maybe I’m just a wuss !!! The Rebismart is quite nifty, you can adjust the speed of the needle, injection and how long the needle stays in for. I do hope you’ll be fine, I was absolutely bricking it at first (I was like you, a real needle phobic ) but you just get used to the routine of injecting. It’s a bit difficult to comment on your nights but I would say it’s going to be far easier for you to arrange your nights out when you’re not injecting, espeicially if you choose to inject at night. I currently inject on a Sunday, Tuesday and Thursday evenings as this suits my lifestyle the best. That way I have Friday and Saturday nights free.

Hi there. I started rebif last September. My children are 3 and 7. I take ibuprofen when doing injection and as long as I do I’m fine. I’ve been very open with them both. I have no problem doing injections in front of them (I use rebismart so they can’t see needle) and my 7 yr old was fascinated at the start now couldn’t care less. 3 yr old not interested but knows that mummy has to do injections! I’ve taken the attitude if they grow up with seeing this it’s just normal for mummy to do this. Good luck on Monday. You’ll be fine. L xxx

Thanks everyone for the advice. Fudgey yes it’s the titration pack. And what’s amitriptyline? Also how could I change my nights the to Sunday, Tuesday, Thursday? As that may fit in better with me too. I will take the painkillers just in case but really hope that the side effects are mild if any. Also concerned taking painkillers all the time can cause damage in itself. I know I need to do this to hopefully stop anymore relapses. I went from 2004 to 2010 not having any then since then have had three. The last two within a space of three months and leaving damage. But I do feel well other than my daft leg. Going to the gym regular etc and feeling more like my old self each day although still at times resentful that this has happened and changed a lot of things in some ways. But every so grateful that I have my little boy however I don’t want him to worry if I’m poorly with these injections…sure ill put on a brave face for him regardless. Thanks again. Xxx

Hi again, Amitriptyline is what I was prescribed to relax my muscles when my arm kept going into spasms but it also makes you sleepy so that helps me sleep through the night and help avoid any flu effects which may be lurking. I think if you’re having your first injection Monday, you could do your second on Thursday and then the third on Sunday, then Tuesday, Thursday and Sunday etc. Please confirm with your nurse but I think as long as you leave at least 48 hours between injections then it’s ok. It’s great that you still do the gym, I used to but I can’t find the physical strength to do it now. I know what you mean about painkillers, it is a worry as I am someone who really never had to and didn’t want to take any kind of tablets before I got ms. I hope to be able to lessen the painkillers when I get a bit more used to Rebif but if I get flu symptoms, I’ll just have to go back on them. Remember, if you are taking Ibuprofen, eat something as they should be taken with food. Hope everything goes ok Monday.

Thanks Fudgey… I might for now stick to the usual days at least for the first week then maybe change if she says I can do that. But that would solve the vent our problem wouldn’t it? I oly do Pilates but I love it and the gym although nowhere near to the extreme I used to. Used to run loads and come out really sweating but not anymore. I do find it makes me feel better and helps with tiredness too. Thank you for that help hun xxx

Hiya , think of it as something that is going to help so is worth doing . Modern needles are so thin you hardly feel them . Remember to get the drug to body temp before injecting and massage the site after . Take just before you go to bed and take a ibuprofen about an hour before . If your going out just take it when you get in . I have been on rebif for about ten years and can honestly say its never got in the way of anything , going out , holidays , flying, even USA customers not long after 911 were ok about it . I just jab myself as I have more control , but I started off with the auto inject . You will be fine and it will be worth it . Good luck :slight_smile:

Thanks again everyone … today is the day. Seriously scared but I know it has to be done. Been watching people do it on you tube. Hopingi can lie down ofa fashion but I think I wanna do it myself then I don’t have to rely on hubbie being in when I need to inject. Btr be worth it esp as I feel well now. Xxxx

Good luck Lisa, hope it all goes well for you :slight_smile:

Good luck Lisa. :slight_smile: x

Right first jab done and I did it myself. It wasn’t as bad as I expected although felt like it took ages to press the button and also ages to actually go in. I also managed to lie down and do it which was a bonus as I have a tendency to faint. So far no side effects…legs a bit achy however I had a very late night Saturday and quite a bit of merriment so this could be to blame. Just chilling now before I collect my lil man from grandads. Thanks for all your messages xxx

Right first jab done and I did it myself. It wasn’t as bad as I expected although felt like it took ages to press the button and also ages to actually go in. I also managed to lie down and do it which was a bonus as I have a tendency to faint. So far no side effects…legs a bit achy however I had a very late night Saturday and quite a bit of merriment so this could be to blame. Just chilling now before I collect my lil man from grandads. Thanks for all your messages xxx