Help! Rebif or Copaxone?

Everyday living
1

Hello,

I had a sore thigh back in July for a couple of days that felt like sunburn when I touched it. Then suddenly I woke up with foot drop which by the next day was worse. I went to my GP who thought I had a stroke or spinal prolapse. I was immediately admitted for the night and all tests were fine. I was then booked in for an Mri. I had this in August and was told I had leisons on my brain but only small ones but there was me writing my life off thinking I had a brain tumour!. Anyway, after a failed lumbar puncture from hell with 5 attempts I was in limbo. I was told by QA that they would let Southampton know. After a month I heard nothing, so I went to my own GP who wrote to the hospital. I was then reffered for an appointment in January this year.

I am classed as having RRMS from my Neurologist, Dr Turner at Southampton General Hospital (he is retiring in May this year have only met him twice). I saw him in January this year and he asked about me going on to treatment but it was up to me but obviously prevention is better than a cure. He suggested Rebif due to my needle phobia. I am going to an information day at the hospital in March which may help me decide. The problem is both drugs have side effects. Any advice is great. Some of you may ask why didn’t I ask my neurologist, I said I would think about it and let him know, and left it at that. Am still waiting to meet my ms nurse have had no contact. Suddenly I have got a letter inviting me to this day whereby my bloods will be taken prior to commencing my treatment! Please don’t get me wrong I am not complaining I am just very frightened and confused. What do you guys suggest? xxx

2

Hi , well I’ve been on both at different times , and whichever choice you make needn’t be for ever , for example if one doesn’t suit for any reason it is possible to change to another , the needle is pretty much exactly the same for those two , just the frequency is different , rebif was 3 times a week if I remember right , and copaxone every day ,

try not to be worried about the side effects , whatever is listed may or may not affect ‘you’ , rebif is generally more of a flu like effect (or was for me) , and copaxone has much milder side effects generally

there’s nothing to be frightened of regarding the injections , and to be honest I soon found it to be second nature on a daily basis

I’m sure they’ll fill you in with as much detail as you want to make a choice , but either one is likely to be OK for you

John

3

Thankyou for your reply John. I have read so many horror stories and just want honesty. Your reply has settled me quite alot xx

4

Hi

I have had both over the last 10 years (5 years on each).

I get no side effects with copaxone and had a few with rebif (both rebif22 + 44)

I would recommend msdecisions.org.uk as a source of information to try to help make up your mind.

I use an autoinjector as I dont like needles.

In all honesty, if i looked back 10 years I would have chosen copaxone as less side effects.

take care

Neil

5

pleased that’s settled you a bit , I’d be happy to give any honest answers to questions you might have , but , it can only be from ‘my’ experience of it all , and as I said what affects one person , might not affect another , so it’s easy to fill up on horror stories that just never apply to yourself

6

Thanks guys, it’s just been such a rollercoaster and a huge shock to be fine one day then have this bombshell dropped on us. I am 39, married with a 13 and 10 year old. It has taken since July last year until now to accept it and move on x

7

Hi Dawny My experience of Rebif, so far, has been nothing other than positive. Xx

8

Thankyou Mrs H that’s great to hear! xxx

9

Any questions, ask away. Was diagnosed in September and started Rebif about three weeks ago, mainly because it doesn’t inject into muscle, is three times per week and because the rebismart device. Xx

10

I’m due to start Rebif in the next few weeks and have opted for the Rebismart as it’s the one that doesn’t resemble a needle or syringe (more like a pager if I’m honest). I also chose this one because it’s only 3 times a week and it’s very own “on board computer” that beeps/vibrates when you need to do your injections, where the injection should go etc etc etc.

I’m not fussed about side effects yet as, like you Dawny, I have a real phobia about needles anyway however I’m am sure there will be some. As long as I don’t have a relapse like I had last year anything will be worth it. Just make sure you keep in touch with your MS Nurse and look after myself if the side effects are a bit yuk.

Take care

Pen xx

11

I’ve been on Rebif since August 2009 and after two severe relapses in quick succession I then had one milder one just after starting on it and am only now having another one. So for me, it works! I also use the Rebismart which wasn’t available when I first went on Rebif but I switched after the first year as the other auto injector was brutal and left me with bruises and wasn’t brilliant if you have limited dexterity. The Rebismart is like a chunky mobile phone and the inject button is very large and only needs a light touch so is much better for me.

There were side effects when I first used Rebif but these were controlled very well with paracetomol and ibuprofen. I used the msdecisions website to sift through the options and choose the drug that I felt best fitted in with my lifestyle. There are also personal accounts from other users and videos showing them doing injections. Your nurse should also be available to help you make the decision; I cannot believe you haven’t heard from him/her yet! I was very apprehensive about self injecting but they do train you and after a while it becomes second nature, just like cleaning your teeth.

Good luck, let us know how you get on.

Tracey x

12

Hi, Started Rebif in November. I will be honest and say I felt pretty rubbish for first 2 months and have improved steadily since then. Im now pretty much back to normal and just keep things in check with a snooze the day after injection. I take ibuprofen and paracetamol before jab, going to bed and then the next day if needed. At first I had to take them pretty much continuously so it has got much better. Rebismart was the reason I chose Rebif if I’m really being honest!! Don’t see or feel the needle. You get to have a practise first on fake skin and my rebif nurse has been brilliant and is on the end of the phone if i need her to come out. It took me 15 minutes to press the button the first time and that is laughable to me now. I like you am 38, 2 girls 7 and 12 and woke up one day with the loss of use of my left side after running half marathon. GP thought I had a stroke but was diagnosed with MS 8 weeks later. I had a previous bout of optic neuritis, numb foot and fatigue but put it down to being a full time working mum. I think of every injection keeping a relapse away! I never again want to feel like I did in the run up to diagnosis if I can help it. Good luck with your choice and hope that helped and hasn’t put you off!

13

Thanks Penthe problem is my neuro said he would refer me to the ms nurse in my area back in January. I have yet to meet her/him, he said that the nurse would contact me direct. As of yet I have not heard anything! - I will leave it untill I go to the information day and as the specialist nurses then and hopefully they can assist me and start the ball rolling x

14

Thankyou all of you! You are such lovely people I now feel that I am not alone as there are times when I am sure work colleagues must think what on earth is wrong with her as she looks “normal”. They don’t feel what I feel everday with the aches and pain and peeing all day! and the fear of not knowing what tomorrow will bring. Thankyou all again so much. I can do this! xxx

15

Hi Dawny,

I have had experience of both. Initially I was on rebif as I didn’t want to inject every day. I chose to use rebismart which was very easy. At first it was ok but at about 4 months I began to get bad headaches and flu aches and shivers if I forgot to take paracetemol. I persevered for 9 months but I just felt I was constantly on paracetemol either to prevent flu or to treat the headaches. My MS nurse suggested I change to a different DMD and as I didn’t want another interferon I chose copaxone. I have been on it now for 6 monthes and doing ok. Only side effects are skin reactions, after injecting it is quite painful feels like a bee sting but this quickly goes and I am also getting lumps under the skin where I inject. Again these do go after a few days and can be massaged away with moisturiser.

Hope this helps

Cathy

16

Hi Dawny

I have been on Copaxone for 6 months and use the auto inject. The daily injection becomes a part of routine pretty quickly. No nasty side effects, just a little sting at the injection site for a short time and the odd lump which disappears over a couple of days.

I can’t help you on the Rebif side although I was on Avonex which was a daily injection but the headaches were too bad to put up with hence going onto Copaxone.

As someone else said take a look at www.msdecisions.org.uk it really is useful.

Take Care

Kaz

17

Hiya I have been on copaxone since May12.

I didn’t fancy the side effects of any of the others as I tend to react to everything.

I’m not bothered by needles etc so I have always used both manual and autoject…7months in I am still playing around with depths/speed of injections to find what suits me best.

As expected for me I don’t really get the stinging but the day following the injection I got large red,hot,itchy lumps. I have tried all the creams/antihistamines and within each site I alternate upper/mid/lower so its a long time before I am back to the same place,my body just didn’t like it and the reactions were driving me mad.

I was so adament I didn’t want to swop so the gp prescribed the full strength piriton which I took 4-6 times daily for a month.It is as though my body restored factory settings as it were and I no longer take any anthistamines and only have very slight swellings and little itching. I f only had done this months sooner.

I am so glad I stuck with it,and I haven’t had a relapse since starting.

Good luck with your decision

Pip

18

Hi Dawny, I have also had both rebif and copaxone (which I am on now) and i initially preferred the sound of rebif because of less injections! However, if I had my choice again I would go directly to copaxone as it has suited me better because I don’t get the feeling of flu symptoms with it, which for me personally never went away during my 3 years on rebif. Rebif didn’t keep my relapses under control as well either. And honestly, the injections aren’t so bad, it’s easier to keep track if you have ms brain fog if they are every day! I just do mine before bed after I’m in my pj’s. I don’t use the auto inject though as I find manual injection easier and gentler for me. I also don’t inject my arms as it tends to be very sore but I’m not skinny so the rest of me is a fairly target rich environment for a needle and it only stings for half a second! Good luck with your choice xx

19

Hi Dawny

I’ve been on both Copaxone and Rebif, I’m still on Copaxone now. Please try not to worry too much, even if you do have side effects or reactions, they settle down pretty quickly, if they don’t you can change.

My experience of Rebif was pretty easy as I didn’t seem to have the flu like side effects but as I was mid relapse when I started it and felt rubbich anyway, I may have had some and just not noticed. I took the advice of my MS nurse and took 2 ibrupofen before injecting and did the injection at night so if I did have side effect, I’d sleep through it. Unfortunately for me after a couple of years it stopped working so I changed to Copaxone.

When I started that I really struggled, which shocked me as I was used to doing injections by then. With me it was pain after injecting and bad site reactions. However! I managed to stick with it, using cold packs after injecting and taking a 1-a-day antihistamine for a few months. This really helped me while my body got used to the drug. Once I was used to it I was fine and now 4 years on I’m still on Copaxone and it seems to work well for me, so I’m glad I stuck with it.

Prior to using DMD’s I had 5 relapses in 6 months and whent back to the same pattern when Rebif stopped working. I now seem to have maybe 1 relapse a year. I was left with some struggles after so many relapses and DMD’s don’t fix those but I knew that and at least I’m not getting new things to cope with due to being on Copaxone now.

I inject manually because I prefer to see what I’m doing and control the speed and depth of the needle better, though I started with the auto injectors for both DMD’s. It’s just personal choice with what works for you.

To me the difference between injecting 3 times a week and injecting daily was not really an issue. I need my phone reminder to tell me to do the injection even though I’m doing everyday so me thinking I’d be more likely to remember every day was a load of ole tosh! lol

On thing I find important is to make sure you keep your skin in good condition, massaging the areas with your usual body lotion (or whatever) the day after injecting.

Whichever you choose, you won’t know how you’ll be with it until you start, so don’t stress too much about it now. Once you’ve done the first one, you’ll wonder what all the fuss was about and before you know it, it become part of life and you won’t give it a 2nd thought.

Good luck

Sue

20

Hi Dawny Can I just add, whilst I am still only on 22 and not due to go up to 44 until next week, I have had negligible side effects so far. I have had a very mild headache twice but to be honest, that may not even have been the Rebif as it didn’t seem to coincide with the injection. And the only site reaction I have is a red splodge which fades after about a week. But I agree with Sue, don’t stress about it. After my first injection I looked in shock at the nurse and said, “is that it”!!! It honestly hurts more when you have your finger pricked for a blood sugar test !! It becomes part of your life and at the end of the day, if whatever you choose isn’t right for you, you can always re insider other options. I bought myself a kind of storage tower, drawer unit thingy, to keep everything in which works for me. Top drawer has all the medical stuff in like needles, antiseptic wipes, plasters (although I’ve never needed one yet), sharps box etc. Middle drawer is all the travel stuff and bottom drawer is paperwork. Probably sounds anally retentive now I’ve told but I like to be organised. Probably overly so !! Xx