Forum

Tysabri update

Hello everyone

I haven’t been around for a while as I seem to have been super busy lately.

I wanted to say a quick hello to all the lovelies I haven’t seen for a while!

Also, a quick update on my Tysabri treatment as I have been on it 9 months now, and wow - how life has changed!

As some of you may remember, I had a terrible relapse/set of relapses in 2010 and couldn’t walk at all - couldn’t do much actually. It really was a very dark time, not helped by the 7 courses of steroids that I was given…

But anyway, things are really looking up at the moment, I feel as though I have been given my life back. A different life albeit as I still can’t walk a great distance due to residual damage. I really hate to imagine what life would be like without it.

I even resorted to LDN to try and help during the time I was waiting to be approved for Tysabri, thanks goodness it came through quickly as LDN did not suit me at all and knocked me straight back down again. Sure it can help with some people’s symptoms, but I never really struggled symptom wise, it was the disease progression that was the problem so Tysabri was the realistic option!

I’m really relieved I made the decision to proceed with it, even though it does come with massive risks, but doesn’t life in general!

I’d like to say a massive ‘Thank you’ to Rizzo, HKFooey, Alison100, Markolad, Chubster, Brog64, Lapreguiceira(sp??)…so many people who supported me through that time & helped encourage me on the right path!

Love & sparkles…Donna xx

Sparkly!!! It’s SO good to see you back on here. We’ve missed you!

Brilliant news that Tysabri is working so well for you

Please don’t disappear on us again?

With love, pinkness and sparkles…

Karen xxx

(pink font in your honour :-))

Hi Karen!!!

I’ve missed you all a lot! I will try not to disappear again now!

I wanted the pink font, but didn’t want to upset anyone’s eyes!

Lots of love xxx

Donna it is nice see you back and I am really glad that the Tysabri is suiting you. I’ve been on it for a year now and this is the first winter for a while that I have got through without a flurry of relapses (got through so far, that is - definitely not counting any chickens yet.) I was not in as bad trouble as you had been, but it has been such a relief to regain something like stability - every month that passes without something new and bad just feels like such a bonus. Like you, I am very glad to have been offered Tysabri, and very glad I accepted the neurologist’s recommendation to go for it.

I don’t like the risks either, but the risks are theoretical - the MS taking permanent lumps out of me was real! It’s not ideal, for sure, but having MS is not ideal, is it? I think all any of us can do is deal with the choices that come along as best we can, and for me that means Tysabri and I’m happy with that.

I hope it continues to do a good job for you.

Alison

x

Pink and Sparkly!!!

It has been way too long since I have seen you here.

Nice to have you back and I am so pleased to hear the Tysabri is helping you so much. It is a shame the LDN didn’t work out though. You must be so thrilled to be getting some quality of life back again

We both started our scary new drugs at about the same time. I am on the chemo drug Cladribine. I am so pleased I got on it when I did and had the chance to try it. I have only had one relapse since being on it! One in 9 months. So much better than the back to back ones I was getting, like you.

Don’t be a stranger Donna and stay around and keep posting. I’ve missed you

Lots of Love

Belinda

It’s really lovely to see you all, and good to be back!

I’m pleased Tysabri is helping you too, Alison. People expect miracles but just not to be constantly relapsing is a miracle to me, and I’m sure you too!

And you too Belinda. These drugs are scary, but we’ve seen the other side - which is EQUALLY as scary! What other people choose is their decision, obivously! But we do what we think is right! I’d never try to influence anyone else - who would!!!???

I hope people on the new site are as friendly as the old one…can’t see many old faces around here!

I’m sure they’ll pop up!

Take care

Donna xxx

Im new and I hope friendly so hello and glad to hear your life has improved.

Pip

Good to see you back, its so good to hear that the tysabri is working for you.

jaki xx

Donna, I’m so glad to see my genuinely pink & sparkly friend back on the forum & delighted to hear the Tysabri is improving your quality of life. I’m on infusion 19, no relapses since day one…anyone who has ever experienced a disabling relapse knows what good news that is. No relapse means no more residual symptoms to try and bounce back from, slowing down the rate of progression quite drastically. I haven’t had massive improvements in mobility, but my one year scan showed no new lesions. Hallelujah for that! Stay with us Donna, we need you here. Pink & sparkly love xxxx

Hi Pip, Jaki & HKFooey!

Lovely to meet you, Pip

Lovely to ‘see’ you again, Jaki - how are things with you? Good I hope? x

And HKF, great to hear the Tysabri is working for you too. Similar to me, although my mobility has improved enough to get me out of the chair at least around the house and short distances, but I do have the use of my hands again, and can wee all by myself haha! The things that please us

I’m coming up for a year in July, and hoping my scan is as positive as yours…they’ve just got to get me in the scanner now!!

Lots of love xxxx

Hi Donna

Good to see you back here and I’m so glad you choose Tysabri you know how good it has been for me and I’m so glad you went for it and it worked I’ve been on it 43 months and never had a relapse in that time that its self has been a miracle for me going from one every 4 or 5 weeks.

I know we both had a hard time from someone about choosing Tysabri (I’m sure you know who I’m talking about) but we rose above it lol

Mark xx

Nice to see you back being all pinknsparkly again. Shame that you’d been misinformed and scared by people without personal experience…I know who you mean as well. Go on, eat some ice cream (he didn’t have MS either - just what is it with people?) and something nice and cheesy. I’ll join you.

cheers,

womanwithunpronounceablespanishname

*maybe not with the cheese - except Philly

Haha

Unprounceablespanishwoman - I’ve just had cheesecake! That’s got to be a bonus

Yes lovely to be back!

And thanks Mark - good that we’re both resiliant isn’t it!!!

xxx

Hi Donna,

It’s good to see the pinknsparkly one back, you’ve been missed.

Excellent news about Tysabri doing the business.

Looking forward to seeing you much more on the boards

x

Hey Donna

Really glad that Tysabri is working for you. JUst to let ya know that cos of it I have been invited to interview for the p/t OT course at my local uni. Couldn’t have done this without this great treatment!

It has definitely been awhile and I hope that life in your corner of the world is good!

Andy

I’m with Tracy, can’t wait to start now I have read such positive things, after back to back relapses since my baby was 5 months old. Previously I’ve tried pretty much all of the DMD’s with major side effects, including major anxiety (almost psychosis), and anaphylactic type reactions, so I gave up on them and managed with regular steroids. A new consultant told me that the steroids were now getting to be a major risk, as my bones were dodgy (a fall and a broken shoulder proved this), and recommended Tysabri which I had been resisting for about 3 years, I decided that I’ve now got nothing to lose, and everything to gain. I’ve not enjoyed my baby as everything is such a major effort. I might look like normal, but everything takes 3 times a much planning and effort to get it done (how do you change a nappy when you can’t manipulate anything with your fingers), so heres to me getting my life back and my baby getting a proper mummy (she might laugh more then), and my big children getting a mum that says yes we can do that, rather than no we can’t do that as I’m too tired/its too far for me to walk/I’ll fall over.

Thanks for the hope

Karen x

Hi Donna, good to see you back and good to hear about the Tysabri. I had my second infusion last week, I was very relieved to start it.Take care,xxjo