Thoughts on meds

[lilypily]

Hi everyone, I'v recently registered but i'v been reading this forum for a very long time, i'm an Aussie.

I apologise, this post will be long.

Background:

I was diagnosed in December of 2007. I had symptoms prior to that and the Neurologists said from my MRI findings that they think i'd had MS for atleast 10 years (making me around the 15 year mark now). I'm 33yrs old.

I tried Betaferon and hated that, then I did 17 infusions of Tysabri. I stopped because for the last 3 infusions I was getting a migraine that put me off my feet for 2-3 days and I have young children so that wasn't a option for me. My Neuro at the time wasn't willing to give me strong pain relief.

Then I was on Copaxone for 4-5 months and I didn't like that either (and I was getting quite a few new lesions).

Then my current Neuro put me on the Cladribine trial. I only did the first 2 courses as the Cladribine was pulled from the market. It was still open for the trial participants to finish the remaining 2 courses, then just before I was due to commence course 3 it was pulled completley due to to many people were sick on it.

I am currently on no meds and I really need to be on something. I'm not comfortable trying Gilenya and my Neuro agrees as she just doesn't know what possible effects there could be due to have taken the Cladribine.

Going back on Tysabri is maybe a option. I had my blood test today for the JC Virus, but I won't know for a while as it has to be sent to Denmark to be tested.

My Neuro is going to find out if the antibody test is available in Australia yet.

If my JCV comes back positive we will still consider Tysabri. The problem is we don't know what effect the Cladribine will have due my very lowered immune system.

If Ty is no go then I may have to remain med free until Campath and BG-12 become available in Australia. Mitoxantrone is also another possible option.

I have over 50 lesions on my brain and 5-6 on my spine. I'm RR and my Neuro has recently classed me as aggressive RR

I really don't want to remain med free but i'm not sure if the risks of meds are worth it??

[KatieDidNOT]

I am so sorry you are in this pickle.

You said you hated Beta. You might have hated it, but did it work?

There is also Avonex, which is once a week. Is that an option?

The interferons do make you sick, but they might be your best bet right now, if Ty does not become an option.

Cheers--Katie

[momof4boys]

Lilypily
We sound similar in the # of lesions which I guess is why your doctor and mine as well called our cases aggressive.

I started on Rebif with a local neuro. That however, quickly changed as soon as I got into a MS clinic. The MS doctor put me on Tysabri which I started March 13.
( I'm JC-). He felt Tysabri was the only option at this point to get my MS under control. The plan is to use Tysabri until BG-12 comes out.

I hope sharing my story has helped you. Best of luck with your decision.
Amy

[lilypily]

Thanks guys

I don't want to go back on the CRABS and my Neuro has said no too. As i'm now aggressive RR my Neuro wants to treat aggressively and says the CRABS won't help me.

I had 5 MRI's in a 7 month period last year. I saw my Neuro this week who wanted me to have another one. My last was in December so I said no. I'm sick of it and the cost! She agreed to wait on the MRI for a month or two.

Ty is the only thing that worked. For the 17 infusions I had no new lesions. I failed Copaxone and the Cymbalta trial.

It's just the unknowns. If i'm JC+ combined with the previous Cladribine my Neuro says i'll be at great risk with the Ty. But the Ty worked!!

If I didn't have 2 children i'd go back on Ty in a heartbeat. But I have to think of my kids, they need me.

[Sapphiresgold]

Ok, I give up......what is the JC virus?...