Forum

Relapses

Hello, I’ve had four relapses since August last year, three of them since January this year which includes the current one. My neurologist wants me to have IV steroids again (first ones were in April) which I have agreed to even though I don’t feel they worked last time (I am pretty desperate now). He also wanted me to have Tysabri instead of starting Rebif next week. I said no to the Tysabri as I want to at least try the Rebif and I really don’t like everything I have read about the Tysabri. I don’t know what’s going on with my MS or even what type it is now. I was diagnosed in 1998 by an awful neuro who said it was benign. It was never benign, just mild due to very early diagnosis in my opinion. I really feel very lost now and it’s like I’ve been through diagnosis three times which doesn’t get any easier. Thank heavens for my lovely MS nurse, neurologist and psychologist :slight_smile: Louise (feeling sorry for myself)

:frowning:

Hello Louise

I’m so sorry your feeling so low. Life can be a bummer at times can’t it

I can’t offer any advice about DMDs…seems to be the night for DMDs, I’m PPMS

You have good medical support, so make good use of them and let them help you make the right decision for you.

((((((hugs))))))

Noreen (trying to cheer up Louise)

Hi Louise I was just diagnosed in November last year started extavia at Xmas but things keep happening with 2 major relapses last year, I’ve tested negative for the jv virus and they are thinking of moving me to tysabri. The choice has to be yours. A lot of people swear by tysabri. If your on Facebook the tysabri closed group has lots of info as does the Gilenya group. Hope you are feeling better X

Thank you for you replies ladies, I was just having a bit of a moan really. I’m not generally in the habit of feeling sorry for myself but it does happen every now and again. Em, I have thoroughly researched my options with the meds and I just don’t feel that Tysabri is right for me at the minute. I did tell my MS nurse that I’d rather try the Rebif and see what happens but that if I do continue to relapse I’ll rethink my options then :slight_smile: I’ll see how bad my right hand side gets too lol Thank you again, Louise :slight_smile:

I was dx a year after you, but my MS was aggressive from the start; I started on Avonex as soon as I could in 2000 and that kept it fairly quiet for 6 or 7 years. Then, like you (but rather earlier), my MS abruptly changed up a gear and I started having cascades of relapses, some pretty brutal and all leaving some disibility behind. After a couple of years of that not-fun carry-on, I started on Tysabri. That’s the trouble with MS. As you say, it doesn’t just have one go at you, so you know what you are dealing with: its impact changes and its level of threat changes and you keep on having to deal with that again and again. Like you, i have always favoured going with the lowest-risk drug that does the job. Looking back, I am glad that I had those good years on Avonex - a stronger and riskier drug back then would have been over-kill.

BUT… I wish with all my heart that I had not soldiered on with Avonex for a couple of years after it had stopped working. The disability I accumulated in those two bad years is permanent, even though the Tysabri has meant no further relapses in the 3 years I have been on it. Viewed through the clear lens of the retrospectoscope, I should have started Tysabri 2 years earlier, as soon as possible after the MS got really active again. I don’t know what I am saying to you here, really, but I think there is something about taking very seriously the damage that newly rampant MS can do, even after it has been quiet for years. It bit me in the behind, good and proper, and in your shoes I would be thinking very seriously about reaching for the big guns if your neurologist thinks that is the best thing for you. My personal experience is just my personal experience, but the neurologist really knows about this stuff: that’s his job.

Good luck.

Alison

Hi Alison, Thank you for your reply. I decided to go with my gut instinct and started the Rebif on Thursday night (second injection tonight) as I personally feel that Tysabri would for me, be overkill at the minute. I don’t think my MS is bad enough to warrant Tysabri

Hi Alison, Thank you for your reply. I decided to go with my gut instinct and started the Rebif on Thursday night (second injection tonight) as I personally feel that Tysabri would for me, be overkill at the minute. I don’t think my MS is bad enough to warrant Tysabri

Oh, not sure why that is on twice and half of what I wrote is missing too

Hi Alison, Thank you for your reply. I decided to go with my gut instinct and started the Rebif on Thursday night (second injection tonight) as I personally feel that Tysabri would for me, be overkill at the minute. I don’t think my MS is bad enough to warrant Tysabri. I will keep an eye on things over the next few months and if necessary re-evaluate the situation then. Hopefully I’ll have the next few years with very few relapses (I’m not daft enough to think there’ll be no relapses now). I am however having more steroids (IV again) next week the first ones were in April but I think my neurologist is erring on the side of caution. Thank you again, Louise