Hi,
Started rebif 3 weeks ago and I am only on 22mg at the moment. All is fine most of the time , a few aches and a headache buton 2 of the mornings post injection I have felt dreadful and have struggled to get up and have achieved very little.
The question I would like answered is Am I doing myself harm by trying to carry on or would I be better to give in? I hate giving in but my husband is keen that i do and as I am self employed I can to a certain extent.
Many thanks in advance.
Emma
Hi, do you take any painkillers(paracetamol or ibuprofen) with your injection? When I took Rebif 22 (I have had to stop now) I used to take two paracetamol just before injecting, but if I forgot then I usually felt horrible (or more so than usual!) in the morning. I don’t know if this was just a coincidence, I’ll never know now, but it could be worth a try? Hope you get sorted and find something that helps, everyone s different! Lilbill x
Hi Emma - sounds like you are struggling and finding it hard to carry on with Rebif when it makes you feel rotten. I would strongly advise you to try your very best to carry on. Perhaps the side effects will wear off after a while. Rebif has strong evidence that it slows progression - not sure how you can measure this but I just have faith. It is also supposed to reduce relapses too. So win win. I would suggest calling the rebif support line they are good for advice on side effects. Also a ms nurse might help if you have one Finally I do go on - there are other Dmds that might suit you better if rebif continues to not be a good option for you Hugs Min xx
Hi Emma,
3 weeks is very early days. You have had good advice so far.
I’ve been on rebif over 6 years. Don’t give up yet - your body has not had time to get used to the drug yet.
Paracetamol/iburofen is a must at the beginning of treatment.
Think of your long term health and persevere a little while longer if you can.
You are being very hard on yourself - sometimes we need to give in for a little while. Listen to your body and try and rest when you can.
The side effects are usually at the beginning of treatment and then fade but if this is not the case for you then you may need to try something else.
I persevered with it and the side effects went away. I have not had a relapse since i started on rebif.
Best of luck
Teresa. x
I started Rebif about a month ago and have just moved up to 44mg. I haven’t had any side effects at all and I don’t even need to take paracetamol. The only reason that I know I’ve taken anything is that I wake up at 3am thinking it’s morning, then realise I’ve got another 4 hours in bed! I guess I’m lucky but thought it would be worth writing this in case anyone is as nervous as I was a few weeks ago.
Er hi Emma
I do have something i would like to share on this subject concerning Rebif, Unfortunaly we cant suger coat everything and every ms person reacts diff to the DMD. U r still new to rebif and as everyone has said some ok some not so good, unfortunatly i was one of those delicate flowers ( my neuros words not mine) that didnt handle it…Headaches r one of the side affects i didnt handle. im not going to tell u now cos i dont wont u to get upset and think it will happen to u, cos it is rare. But please dont think it was a life threating situation im still here it just wasnt nice, how can we make a judgement without as much info as poss good or bad. let me n and i will tell u.
Paula x
Paula. What was your bad experience?
hi
I did my rebif injection in the eve as usual and later went to bed, i thought i was having a dream in the nite and i was screaming with pain in my head every few seconds (this i thought was a bad dream) but the screaming woke me and i realised it wasnt a dream it was me screaming.this was just after 2am i just lay there for what seamed forever but was bout 20mins, my head kept going in2 spasams every few seconds the pain was off the scale excrusiating , i called my daughter n could only cry down the fone that i needed help, i thought my brain was guna burst. she got in her car in her pjs and got to me in 5mins she was crying watching me in so much pain and all this time the spasems kept coming. she called my partner who said call 999 and he arrived just b4 the ambulence. it took the paramedics 40mins to get me down the stairs my brain was still goin in2 spasems i realy cant explain how painful it was there is no number to explain it. i was given morphen in the amblence and gas when another one hit… was taken to QM hospital was put on IV drip for my pain and bout 4hrs later it started to subside, i had another 6 attacks over the nxt few wks but was given super strong pain tabs to take when i felt the first sign of another. as u can imagin my nuero took me of rebif that was may last yr… The dx status migrainus migrains… well thats my story on rebif… The DMD people called me and asked bout what happened on rebif so they can learn from it. this was a very rare thing but it happens.
paula
Paula
I’m glad I read your post. I don’t take any DMD’s and if the doctors suggest rebif I wll have second thoughts. I suffer from migranes akin to mini-strokes which can last for 3 days and I have no wish to provoke one by taking a drug for my MS.
Patrick
I was on Rebif for 4 years and the first 6 weeks were the hardest. I was still recovering from a biggie relapse also but I used to take ibuprofen with the injection at bedtime and would often wake up feeling very achy and a bit hungover the next morning. I would take some more ibuprofen and go into working feeling groggy and under par. It used to wear off by lunchtime usually.
The side effects wore off just before I went up to the 44mg dose and didn’t bother me after that. I’m glad I persevered as I had 3.5 years without a relapse.
Tracey x
I was diagnosed with MS in December and was given a choice of DMD’s - I went on the Rebif and was started on 44mg. It has made me feel achey most days and I take ibuprofen every time I inject (dropped the paracetamol about 2 weeks ago) Since starting the Rebif (maybe it’s coincidence) my symptoms which are like a burning sensation/shock like feeling in my head behind my left eye down to the left side of my mouth have returned wit a vengence. They were down to about 3 a week, now I’m having over 60 a day ad that’s a good day! They are only a split second long but I am fed up and they are so draining. Does anyone get these symptoms too? Any advice welcome.
Val x
hi patrick
please dont let what happened to meput u off from DMD, but im so feed up of Drs suger coating what we r feeling making us feel were making it up or bing drama queens, not 1 of the drs iv cen have ms. grrrr over
good health patrick
paula x
hi chewitt14
do u have optic nuritus? cos what ur feeling sound like it, i no cos iv had it for 2yrs
paula x
Hi Patrick
I suffered with migraines prior to starting Rebif too and, whilst I wouldn’t say mine were like mini strokes, they did put me in bed for 2-3 days with sensitivity to noise, light and severe nausea (I couldn’t even keep a sip of water down sometimes). However Rebif didn’t increase the occurrence of my migraines. I now take Topiramate 75mg daily (50mg at night and 25mg in the morning) which has brought them down to a dull throb in my temple for a few days. It isn’t perfect but it does mean I can still function so that’s a huge improvement to losing a couple of days once or twice a month.
Tracey
[quote=“Lilbill”] Hi, do you take any painkillers(paracetamol or ibuprofen) with your injection? When I took Rebif 22 (I have had to stop now) I used to take two paracetamol just before injecting, but if I forgot then I usually felt horrible (or more so than usual!) in the morning. I don’t know if this was just a coincidence, I’ll never know now, but it could be worth a try? Hope you get sorted and find something that helps, everyone s different! Lilbill x [/quote] I agree, I’ve been on rebif for nearly 4 years and I still have to take painkillers an hour before injecting otherwise I notice a significant difference to how a feel later on in the day. Nicola
[quote=paula browning]
hi chewitt14
do u have optic nuritus? cos what ur feeling sound like it, i no cos iv had it for 2yrs
paula x
Hi Paula,
I don’t know what it is I am so fed up. I rang my MS nurse thinking it might be a reaction to the Rebif injections that flared the do’s up and she made me an appointment with the neurologist the next day. I felt like I was wasting his time and he just said it was a continuation of what I had previously. I just want someone to tell me why they have gone from about 3 per week to over 60 a day now instead of prescribing something used for epilepsy to cover up the symptoms. (I haven’t got epilepsy) Apart from my poor balance and a tipsy feeling, these ‘do’s’ are all I have experienced even though they are uncomfortable to say the least. My diagnosis was made from 2 MRI scans - one without and one with dye and my explanation of what I was experiencing.It took over 3 months for my results of the 2nd MRI to come through and when I thought my appointment was to discuss the results of this, I was told that I had MS in a manner as if I should have known it wasn’t a virus after all. At the same appointment I was given a book about DMD’S and told to make a decision and the MS nurse would be in touch. This all happened in 10 minutes so all my questions remain unanswered. I am hoping to hear from another neurologist as I am really disappointed in the one I see. Maybe I’m just being dramatic. I just want to know what is happening to me.
hi chewitt14
optic nuritus is a stabbing pain behind ur eye/s mine is the right eye, i was watching tv b4 my dx and when i rubbed at my left cos i was tied i noticed the picture was hazy and reds look brown or a mucky red, i went to the opticens n he said go to doc which i did long story but didnt need an mir to dx ms with this, in fact if it is optic nuritus ur having a relapes…my nuro told me this. the tabs for epilepsy is it amitriptaline? cos im told this med is an antie-epilepsy tab but not just for that but for other things we may suffer so dont worry to much…lots of drugs we will end up taking cover lots of things there just covering all bases.
As far as the lengh of time it takes for an appt just read what everyone on this forum complains about …its at the top of gripes, along with the feeling of bing a pain in the b*m, i dont think they have all the answers cos they dont no themselves, its not like a cold this MS is a complicated illness 4 u, me and all our forum friends
when i was told i was in shock and think i cryed more in 2 wks than in most af my life i still find myself sayin ’ i have ms’ to myself sometimes. im now 47 and i didnt c my life pannin out this way but its happened and we have to deal with it the best we can. i was given 5 dvds 2 watch and decide what injection system i wonted how the hell do u do that when told u have MS…crazy…like i realy wonted to b a pin cusion lol.
Ur not bin dramatic ur just bin normal and wont answers…so keep askin til u get those answers thats all u can do for now chewitt.
well need sleep cos tabs r kicking in now …but talk 2 the forum ul find most if not ALL of us feel just like u.
paula x
Hi to everyone who has commented I hope you all don’t mind me adding in my experience with Rebif.
I was diagnosed with MS in August last year (2013) after 2 MRI’s one with dye and one without and a lumbar puncture. I was told about DMD’s and told they would be of benefit to me. My last relaspe went from March through to the end of November. I sarted on Rebif on the 10 December and gonna be honest I have never felt so unwell. I was started on the low 8.8mg dose then increased to 22mg and now on 44mg, December was a total wipe out form me feeling extrmely unwell not being able to get out of bed, dealing with flu symptoms and of course the dreaded headaches started. I have now been on Rebif over 4 months and the headaches are awful, I am popping paracetamol and Ibuprofen like they are sweets. I have headaches every single day some days I never seem to get rid of them.
Just 7 weeks ago I had another relapse! I have just seen my consulant and been told I need another MRI scan. The headaches are still continuing and I believe they are being caused by the Rebif. My consultant believes I have Miagraines!!! I have only ever had 1 Miagraine in my life, but he is persistant and says I shoudnt rush about coming off Rebif and insists I start taking Miagraine tablets to see if they help. I was given Migraine tablets back in September as my vision was badly affected by the MS, but the consultant insisted it was miagraine then and shoved me on 2 differet types of tablets which didn’t agree with me.
I told him I have never felt so ill since being on Rebif and that I couldn’t carry on feeling like this.
Was feeling rather alone until I read all your comments. Feel like I need to make a decision about this drug and whether to look at others or to just come off and live my life as best I can.
Any feedback or input would be greatly received
Thanks Sam