Good morning everyone.
I am after some advice or experiences really…I have been on REBIF for a while now, its not really been working for me personally. My neuro team have offered me both Tysabri and Copoxone (excuse the spelling) - and said I may choose which one I want to go on to…its all well and good reading up about the drugs - but I am wondering about your personal experiences about either of these.
Thought please? And thanks in advance for any responses!!
Hxx
What is yor neuro’s recommendation?
If they’ve just said, ‘You can have either, Hayley, up to you,’ without telling you what they think is the best thing for you then they need shooting, in my view. That’s what they’re paid for, for flip’s sake, and it’s an important decision - it’s not like you’re choosing which lipstick colour to go for…
OK, sorry - rant over. It’s just I do get a bit narky about hightly-paid, qualified and experienced people failing miserably to fulfil their responsibility to advise patients. Leaving people to choose between the first line DMDs is one thing - their risks and benefirs are much of a muchness, but Tysabri is a different matter.
My personal experience, when Avonex stopped working, was that the neuro recommended Tysabri, carefully explained why (alarmingly active and damaging MS), and said that if I did not want to go down that route. Copaxone was also an option. So it was my decision to go for Tysabri (which I did) but I had a clear steer on what the experts thought was best for my MS. I needed that to reassure me that taking on the additional risks of Tysabri (small, but very serious) were, on balance, worth it for the stronger effect it tends to have on keeping MS at bay.
If I were you I would tell your neuro to get off that fence before he/she gets piles and tell you what he/she thinks you should do.
Alison
x
Sorry - put a full stop where there should be a comma. Should have read:
‘…if I did not want to go down that route, Copaxone was also an option.’
A
hi H
I did not get a choice I was told you can go on copaxone, its a daily injection, it was not a prospect I was looking forward to, but I’ve been on it now for 2 weeks, its such a thin short needle it does not hurt, it has become part of my daily routine so quickly,
I have to make sure I do not use the same injection site within 7 days, I’ve read up on people get a reaction at the injection site, I can honestly say I dont have a lump or any reaction at the injection site, it does within about 30 seconds get a stinging sensation I just put the ice pack on it which stops the stinging within about 30 minutes, its as if I have not had an injection.
the side effects from my copaxone are headaches and nausea which I get, I have been told it can take between 6-9 months before I see any difference.
Al x
Hey Hayely
If your neuro has offered you either Tysabri oir Copaxone, I wuld go for the Tysdari. I have been on it for over 2 years ow and I haven’t had relapse since I started. I tried both Betaferon and Rebif and they didn’t work as I was averaging 3 relapses a year before I started Tysabri.
Since staring it I have completed an Access to Heatlh Studies course and I am hoping to get on to an Occupational Therapy degree course at my local university, None of which would have been possible if I hadb’t been on Tysabri.
The one thehing that worries people about Tysabri is the minute, micrscopic risk of a very rare brain infection called PML. This is caused by the jC virus and a test is done to see if you have it. IF you do the risk of the developing PML is 1 in 350 or 0.3%! For me the benefits far outweigh the risk so much to the point that I have asked the neuro team not to waste precious NHS time and resources as they have to be sent abroad for testing. Why would I want to stop treatment that has worked for me so well for such an infintesimal risk? Not happening EVER!
Andy
When you say that Rebif isn’t working for you, do you mean you are still relapsing on it or that you aren’t coping with the side effects?
If it’s side effects, and your MS is stable, then personally I’d opt for Copaxone - less hassle and fewest side effects of the lot for most MSers.
If it’s relapses, then I’d opt for Tysabri - it’s heavier duty and everyone on here who’s on it has only good things to say for it.
Mind you, I can’t see a neuro offering Tysabri unless he/she thought you needed it. Actually, I’m very confused why a neuro would offer a choice between Tysabri and Copaxone without explaining the pros and cons!
Good luck with the decision.
Karen x
In terms of effectiveness, Rebif worked very well for my wife… but she had such bad injection site reactions, that the MS nurses would bring in other MS nurses, just to gawp at them ! That means that this is unusual - so other people shouldn’t worry about Rebif.
But eventually she decided to try something else. Tysabri. It seems to work pretty well… probably the same as Rebif. But the great thing is that it is a once a month infusion - needles only once per month. The negative is that it is administered in hospital. Once we get there, it usually takes about 3 hours before we’re back out of the door… so with the additional drive to/from… it uses up a lot of a day, once per month… , which is not as convenient as injecting at home.
Tysabri has some potential side effects which include a very serious PML - but this is very rare and they do routine blood tests which indicate if you’re getting into danger of developing it… so it doesn’t feel like a threat.
Sorry I can’t answer your exact question fully.
Mornign everyone - and thank you so much for your response. I obviously didnt lay out my initial question very well…
REBIF doesnt work for me in the respect that I have had a fair few relapses - and despite being on it for 2 years now the side effects along with the skin site reactions are almost unbearable - my skin is startng to break down and sore. The flu effects are just awful, 3 nights a week are completely wiped out as I know I am going to get them.
I dont think my neuro is sitting on the fence - and he has been very opinionated on which I should go for (tysabri) - but he has also stated that if I didnt want to go down this route yet he would be OK with me trying Copoxone (I should learn to spell these really). So yes the ball is in my court - the same as when I went onto DMDs 2 years ago and I had a day at the hospital learning about the drugs and injecting fake skin etc…whilst there everyone was in the same boat so no-one had any experience of any of the drugs and I choose REBIF as it was so simple with the auto injector.
With the Tysabri being a hospital jobby - what are thoughts on work? I work full time and the hospital I go to is over an hour away, what with possibly being there for 3 hours or more thats at least 5 hours - so I am thinking it would be a day off a month…I guess it depends what time your infusion is.
I really do appreciate your thoughts - family and fella have been very good with advising and offering opinions - but of course they can only go on information and not experience (well my fella has MS but he isnt on any DMDs)
Its just an ever turning circle…
Hxx
Hey Hayley
I am assuming that your employers are aware of the fact that you have MS. Under the Equality Act (formely DDA) your employer has to release you for the hours that you need for treatment so they have an obligation to let you have the time off.
Andy
Hi Guys
Thanks again! I spoke with my boss yesterday about possibly going onto Tysabri. He was, as he always is fantastic about it - I knew he would be, just thought it may be the “bigger HR machine” that kicked off! He said its not even something I need to worry about and I take what time I need. I am fortunate enough to be at a grade where we can “effectively manage our own time” so I can work flexible hours as long as at the end of the month I have done my contracted hours so I get to go if I am feeling what I describe as MSey…
So anyway - I have decided to go with Tysabri…I think.
Have good days everyone
Hxx
Hi Hx
I was on Rebif for over 5 years and was relapsing every 6-9 months.
After complications with it, I was taken off it and put on Copaxone over 2 1/2 years ago. I have been relapse free since and doing OK.
I have no side effects with copaxone.
I wasn’t offered Tysabri. I hope it works for you.
Take care
Neil
Hi all
I have read with interest all of your submissions. I’m at the point where I need to decide which drug I want to go on. I was diagnosed in Jul 2007 after a bout of double vision. Then I had nothing till last year, where I had 2 relapses. Optic Neuritis (same eye) and slurred speech - which I found very embarrassing, because it just sounded like I was very drunk! At the moment I’m erring towards Avonex. My specialist only mentioned the Rebif and Copaxone, so I don’t even know if Avonex is available to me. He told me I wasn’t at the stage yet where I need to look at Tysabri. I know I could still say I don’t want any treatment, but I’m trying to look at things openly. From what I’m hearing from you all, you have all benefitted from taking the drug, whether it be sticking to one drug, or swapping to another after a certain amount of time. I think I’m struggling a bit with the “how do I know it’s working?” In your opinions, now I’ve had another 2 relapses in quick succession am I now going to experience more? I know that’s a difficult question because everyone is different. Any thoughts, advice would be really much appreciated.
Many thanks
Gill
Hi Gill
Thats a toughie…one of the hardest things for me when choosing treatment was the thought that you could be taking a drug that may or may not be cutting the rate/severity of relapses that you may or may not have. REBIF is not my friend - it made me so poorly and in the end I just thought “why am I taking something that is making me so ill when we dont even know if its doing anything”. Turns out it wasnt as I relapsed a few times…thats me personally. There are plenty on REBIF that take it well and do really well. Its not a complicated process to inject yourself - certainly if you use the auto injector. Its the side effects that did me! But loads of people lose the side effects after adjusting to it. The only way to know if it works for you is to try it. But of course you could not be on anything and not have a relapse and also be on DMDs and not have a relapse…its a strange circle…
Its not much help - but I just think if you are offered DMDs then take them. At the end of the day I didnt want a relapse that would be so bad I wouldnt really recover from it (I recover fairly well after time and steroids!) but each relapse leaves me weaker and weaker in general. I am now on Tysabri, had my first infusion last week - and I feel like I am still recovering from that. But I took REBIF for 2.5 years so if I can help you in anyway by answering qurstions etc please feel free to message me.
Good Luck with your decision.
Hayley xx