Starting Rebif next!

[zoefromsussex]

Hi all,
Well, as some of you may know I recently started Copaxone but was taken off the treatment within a week due to an adverse reaction. This was my only real choice of dmd so I am really upset that I can't continue.
Today I saw the neuro and for once he was really helpful and sympathetic! He has suggested I give Rebif a try next and if it isn't for me, I'll be switched to Gilenya.
I am sooooo scared now! I have a long history of clinical depression and lost my dad in 2010 as a direct result of similar drugs (hepititis & cirhosis which caused liver failure and it was a very long, painful illness. It also caused kidney failure amongst other problems)
I just feel caught between a rock and a hard place here because I'm getting relapses roughly every three to four months and not much recovery n between flare up's. If I take nothing the MS will likely progress and if I take these drugs. I'm scared of ending up ill. It's taken years to get my depression under control and I just can't bear to be back to square one.
What do I do here? Take my chances with the MS or try the drugs? The neuro says I'll have regular blood tests but it doesn't reassure me one bit as my dad had regular tests too and yet years later he still got sick and the doctors didn't figure out what was wrong until it was far too late.
Please help me choose!
I

[zoefromsussex]

Lisa/Laura, yep, you're right in that only we can decide the right treatment but it is difficult! I kid myself all the time that I'll be fine without anything but I know deep down that it's not the case! Theres always some symptom to remind you what you're up against. I've woken today with sore, red, burning eyes which I'm hoping will just be conjunctivitis but am a bit anxious about as I had irisitis last year before all the ms stuff kicked off. Fingers crossed it won't be that.

[Needhelp16]

I keep going back and forth.  I've been feeling so great not being on any meds, I almost feel like why take something and feel like crap again?  

Like I said earlier, I have plenty of time to think about it.  I will not go back on an interferon though.  If I could, I would because I definitely feel like Lisa...taking something that's been around for years would be the best choice. Also like Lisa, only you can make that decision about your health.  Don't let my experience scare you.

Thank you for the surgery well wishes and keep me posted to what you decide and how it goes!

Laura

[LisaJF]

Agree on the Rebif. If it were me to have a choice, that is what I would choose (that's me).  But, what it all boils down to is what you feel comfortable with Zoe.  This is YOUR health after all.

I know if it were me, I would tend to stick to the DMDs that have been around for a long time and see who is taking it and how they feel they are doing on it (in progression or halting thereof, side effects, etc.)   But that's me.

There's nothing wrong in waiting until you see the MS Specialist and see what his opinion is.  

Good luck on your appointment.

Lisa

[zoefromsussex]

It's not an easy thing to choose your treatment. With most condition's the doc just tells you what to do and you do it! I got a letter through on thursday offering me an appointment with the MS specialist. I've been waiting ages to see him so I'm going to delay starting Rebif until I've heard his suggestion's. I feel that the interferons often make life harder than it would be without treatment  because lets face it, nobody really knows what their ms would be like if they weren't on a dmd. It's all 'maybe'. I was planning to do without a drug but the neuro said it wouldn't be a good idea since my own ms has had such frequent flares. I've been offered Gilenya or Tysabri as well as the interferon's but the only drug I feel comfortable to take is Copaxone so I'm hoping to pursuede the specialist to let me try it again.
I hope your surgery goes well & that you figure out a suitable drug. Is Copaxone your first choice right now?

[Needhelp16]

I know if you're on Rebif they can try to readjust your depression meds.  If that doesn't work, they can try keeping you on the 22mcg instead of the 44mcg because there are less side effects at the lower dose. The only bad thing is you're on getting the full dose, so it might not be as effective.

Right now I am not on anything.  The reason being is I'm having major surgery at the end of the month.  Once I'm 100% healed I will go on something.  What, I don't know.

I've already been on copaxone and Rebif. I can't really so on a different interferon, because it will give me the same side effect as Rebif did.  That really only gives me 2 options, neither which I like.  I'm contemplating on whether to try copaxone again or not.  I have plenty of time to think on it.

Laura

[zoefromsussex]

Hi Laura,

Thanks for your reply. Yep, I must admit I was surprised he offered it too given that I've been on antidepressants since I was a teenager (I'm 34 now) I wonder if being on antidepressants already will head any depression off? Maybe if they up my dose or something I'll be okay? It's definitely worrying me but then so is the speed at which my relapses have hit. The neuro has said to just try an interferon and if it doesn't suit me he'll offer Gilenya or Tysabri but I know both of those have a high risk of depression too! It seems we can't win. If you take a dmd you risk depression and other nasty side effects but if you don't take a treatment you'll likely just progress with the MS. It's something I've agonised over recently.
So are you taking a dmd right now? Have you been diagnosed for long? I wanted to stay off dmd's and see how things progress but it's caused arguments with my hubby as he wants me to at least try a new drug. I worry about the flu sx too and liver damage

[Needhelp16]

I was just recently taken off of Rebif because it messed with my mental well being so bad.  For me, if you have a history of depression, it's not worth it.  All of the interferons can have a bad affect on your moods etc.

Everyone is different, so you might not have any problems. There's no way to really know. However, I am surprised your neuro would recommend it with your history, because it's a likely side effect.

Good luck with your choice.  I know it's really difficult.  Let us know what you decide and how you're doing!

Laura

[sllowe]

Hi Zoe,

I did not remember you had a problem with copax.
Like all meds, not all of us experience those side effects. If I'm remembering correctly, you were initially CIS? If so, you are in that majority where early treatment is most successful.

I say go for it. Don't be scared :) The labs that will be run for you are liver enzymes and blood cell counts. If you have a problem, once you stop, you return to normal.

I say go for it :)  Fear will keep you from moving forwrd. Hopefully the Rebif will stop this in it's tracks!
(((Hugs)))
shell