Like everyone else, I also definitely started feeling better as far as fatigue goes by month 6. But strangely my eyesight got much sharper after the first 2 infusions. But I think the 5-6 month mark is when it really kicks in.

I started using Tysabri in July 2008. I have only ever had one test - which was in April 2012 (they were not testing titre levels in Australia until very recently, and it was using data this test that they extrapolated my level of 2.406).

When my neuro told me my level last September (2014), I decided I wanted to have a new test done - feeling that it was difficult to make a decision based around 'old' data. I asked my neuro in December if I could do this, and he said 'yes, but they will be unlikely to do another test since you already have a positive result that is over their recommended limit, and although levels change, it is improbable they would drop that far'.

First off--Welcome MSbelle! Sorry you have to be in this club but happy you have choices in what you treat your MS with! Best wishes for your success on this drug!

Next...I had # 100 on the 22nd! Great day! The nurses threw a surprise party to celebrate, did another interview and had a great time! Total shock over the sneak party, cake, balloons, streamers, flowers, cards!
As usual, no problems, no concerns with infusions! :Dancing-Chilli::yahoo:

Even better? (picture sigh of relief here) I applied for assistance from the hospital and I qualified for a payment plan and a discount. It wasn't much and I hated asking but I was on my way under for the third time and tired of fighting the tide but it gives me some relief and time to figure out what I am going to do. (PS! Thanks for all of your helpful suggestions, they gave me good ideas and I am going to act on a few of them!)


I still want to run away with my retirement fund and quit my job and go follow music festivals across the US, with the boat on top of whatever we drive off in so we can live on a river when we're not traveling! (Is this what they call midlife crisis or second childhood?)

Hope y'all are well! Life is GOOD!

Goodbye Tysabri - hello Gilenya
 

Looks like my love affair with Ty now has to end. My Neuro has told me that he is very uncomfortable with me continuing on Tysabri after six years with a JCV level of 2.406. Was so good, this makes me very sad.

Hoping it isn't a nasty breakup :( :(

I hope so too, Lyn. You had a nice long run with TY.
What next?:hug:

Checking in with Tysabri infusion #2 today! No side effects at all this time :) I went prepared with food, water, and my heated neck pillow and slippers! Was quite comfy actually!

Lynn- Have you talked about what other medication to go on after Ty? I am counting down my Ty infusions till I get to go on Lemtrada. I can't WAIT to go on Lemtrada. Maybe that's an option for you too?

Hello MSBelle

My doctor mentioned Lemtrada to me at my last visit - it isn't yet on our PBS (pharmaceutical benefits scheme) in Australia, and has only just been approved for use here (at a very large cost).

It sounds fantastic, but one of the drawbacks is that it can cause other immune diseases - like thyroid diseases and thrombocytopenia (low platelets - where you produce a normal amount but your spleen destroys them, thinking they are 'baddies'). I already have immune thrombocytopenia, so I think my doc won't touch it for me.

We will have to see, he said that even if it takes six months to become available to me, he still wants me off Ty now.

These are exciting times for people with MS, so glad we now have so many options open for us.

I guess it depends on so many factors... which DMD to go on. My disease is aggressive and the secondary immune diseases are manageable and even curable with medications... they really don't phase me. Nothing could be worse that Lemtrada could cause than my course of MS. But I realize not everyone has such an aggressive disease progression and I'd be a lot more wary of it if I were still able to walk alright.

Yes you are right about personal circumstances, and the course of your disease.

To my knowledge no auto-immune diseases are curable – though many have medications (like MS) that can modulate the effects. My (other) auto-immune disease (thrombocytopenia) is not curable, can be life threatening, and there are no medications that control it, although steroids can help when it is really acute.

I was diagnosed with RRMS nearly fourteen years ago. My Neuro told me that with my lesion load, and clinical presentation, he expected me to be secondary progressive within two years, and profoundly disabled within five years. I would have jumped on anything to halt it.

At that time, Betaseron was the strongest drug available, and I couldn't start it fast enough. Luckily for me, my mobility, vision, pain, bowel, and bladder control improved over the next few years. Probably because Beta slowed down the inflammation and allowed some of my nerves to remyelinate. When the side effects became too much to bear 8 years later, I went to Tysabri – which I have used for the last six years.

Thing is though, we all have our own ‘fully-customised’ disease - no two people suffer the same and from the sound of things, you are having a really bad time. If I were in your situation now, I would likely be crying out for Lemtrada (as I would have been two years past Dx ) – and who knows, perhaps I will go on to have it regardless of possible effects.

Good luck with the Tysabri – I hope it is as good for you as it was for me.

augh i missed jan and february infusion due to insurance issues, and now i'm having a relapse. boo! i had such high hopes for this summer :(