Interferon or Copaxone?

sqooka

Hi again all!

I've finally come around to the idea of starting treatment for MS, (thanks to a fantastic doctor I was lucky enough to get to see) and I was wondering if anyone on either of these meds could share their experiences with them. I'm leaning fairly strongly towards Copaxone but it's really only because of the fear of feeling sick all the time on interferon and so if people have actually found it fine I'd really like to hear about it. Same goes for Copaxone. Also, I would like to have another mri done before I go back so I can be as fully informed as I can be and I've found you can just pay yourself at those euromedic clinics - but will they know what I need (aside from needing gadolinium and brain and spinal cord scanned I don't........)?

byhookorbycrook

Any chance you could go straight to Tysabri, it is far more effective and is being used in some cases now as a first line treatment? I was on betaferon for a few years, self injecting was a pain (literally.)I wasn't that ill on it, learned to take it about an hour before bed, with some paracetemol. Sites were sore for a while though and I gave up on doing my arms as the bruises were awful and it was much sorer to inject there. I also got a "chillow" to help keep me cool at night .


http://www.amazon.co.uk/Soothsoft-604232777510-Chillow-Pillow-Single/dp/B0000V0E14/ref=sr_1_1?ie=UTF8&qid=1372280195&sr=8-1&keywords=chillow+pillows

sqooka

I don't think starting straight with that one is an option for me, the consultant I had today was absolutely fantastic, she went through the first-line vs. second line treatments with me - (to be honest she kinda had to go back to the start completely). Yeah, not looking forward to self-injecting alright, plus I was always hoping to avoid treatment forever :rolleyes: there's optimism and then there's denial....... I think I need to give those two a lot of thought. Those chillows look deadly, thanks. Sigh, I wish there was some way kittens could lick the meds onto me...

byhookorbycrook

Look at it this way, the slower the disease moves, the better. There's no cure at the moment but somewhere along the line there will be, so stay as well as you can until then. Any talk of the oral treatments for you?

Knocknarea

Hi sqooka, you are so lucky to have such a good neurologist who spends the time explaining your options. I have experience of both drugs, when first diagnosed I was started on betaferon, I don't think I quite understood how the side effects would play such a big part on my general health in my first year ! From the get go, I got injection site rxn, I still have permanent marks on my thighs which are likely to be with me for life ! The flu like symptoms were prevalent in the initial 3 months but subsided. My first winter on the drug, I picked up every cough, flu and illness I came in contact with, I didn't seem to be able to fight anything ! And then in the same winter I started to have heart palpitations, I read that this was a possible side effect but when I ended up in hospital on heart monitors no one seemed to want to join the dots back to the interferon. The thing was, they wanted me to stay on the drug for at least a year to see if it was effective. Long story short I also had two relapses in the 12 months and after the most recent one in April my neurologist switched me to copaxone after a short break in between. And delighted to say so far so good, yes it's a daily injection, but u get so used of it, I get up in the morning, inject, shower, go to work! The site stings for about 10 mins and that's it, gone no long lasting effects. I feel so much better too and the palpitations have stopped, so I guess for me copaxone is the hands down winner! As for MRI, yes you should get a full set done before you start treatment, my neurologist referred me, it's with euronics, so I think u will need a referral and the results to go to your neurologist, if a public patient can be a few months waiting list, but if you have your referral and you are willing to pay the waiting time is only a matter of days. I hope I have helped if you want to PM me by all means do.

sqooka

Thansk for the responses, they've been very helpful! I know, I've had some very much less than positive experiences along the way so she's worth her weight in gold as far as I'm concerned. The first time treatment was suggested it was fingoliomod that was recommended to me but it was always copaxone I felt most at ease with. It seems to be the one with the least side-effects, and while I know I could end up really fed up with injecting every day, I think I'd still like to try it until I do. I've had two MRIs before now, and the next one will be along in the next few months alright, I just have a lot of stuff to sort out along the way. Does Copaxone need to be refrigerated? If so I might buy a mini-fridge so I can hide it in my room rather than having to explain it to my flat-mate.

Knocknarea

Glad to be of some help, the copaxone comes in a small box less than the size of an ipad, you take a weeks supply and put into a little pouch, the size of a pencil case, the remaining go into what could be described as a lunch box!, which you leave in the fridge. Very small and discreet, and takes up very little space. I keep my pouch of the weekly supply upstairs in a wardrobe in my room, along with sharps bins for the needles, I have smallies so its out of harms way and as I said my injection is part of my morning routine.

Best of luck

Paddy James

Knocknarea wrote: »

Glad to be of some help, the copaxone comes in a small box less than the size of an ipad, you take a weeks supply and put into a little pouch, the size of a pencil case, the remaining go into what could be described as a lunch box!, which you leave in the fridge. Very small and discreet, and takes up very little space. I keep my pouch of the weekly supply upstairs in a wardrobe in my room, along with sharps bins for the needles, I have smallies so its out of harms way and as I said my injection is part of my morning routine.

Best of luck

Why not ask for Gilenya ? It's an oral drug an saves injecting and is approved under long term illness

ash23

I'm on copaxone also. Started it the day after diagnosis. You'd be surprised how daily injections just become a part of your life. I don't even think about it anymore. I get the occasional bruise and the site can sting a bit, sometimes more than other's. I occasionally get a lump under the skin which is red and it can last a few hours, 24 max. Sometimes it's a little lump, sometimes it's bigger.
Other than that, it's fine. I've carried a week's work onto a flight in ny handluggage and no problems although I did take a letter from the gp with me just in case.
I've had a relapse since starting it. Optic neuritis. I had it last year before I started copaxone and was basically blind in one eye. Couldn't drive and was off work fir 6 weeks. This time the vision was blurred but still there so I can drive and work.