Lesions

[daisy.girl]

I was dx one year ago, Jan 2010 with RRMS. My MRI at that time showed about 10 white matter lesions. I had a repeat MRI in Oct 2010, and just saw my neurologist last week to go over the results. He told me I had 5 new lesions, that were not there on the Jan MRI.

My question: Are five new lesions a lot in a 9 month period of time? I will be starting Tysabri infusions soon.

Thanks........

[daisy.girl]

I don't know why.......He did mention that the ABC-R's were only about 29% effective, and that the tysabri was much more....I think around 83%.

[wiggles94]

I am on REBIF and had a follow up MRI after being on it for 6 months - no new lesions were noted.  

I am wondering why your neuro is choosing to start you on tysabri right off?  Did you have a discussion of all the DMDs and their side effects?  MY understanding was that tysabri is used when the injectables are not doing their job.

Just a thought - and best of luck to you.  I hope you are feeling well.

[daisy.girl]

thanks for your reply.

Not sure if this information will help:

'the rate of PML is about 1.48 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.38 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.'
http://www.foxbusiness.com/markets/2010/12/16/biogen-infections-death-tysabri-patients/

I am banking on the essentially nonexistent in the first year, I will only take 11 or 12 infusions, I am hoping by then there will be more actual use data from the new oral drug Gilenya.

[Sumanadevii]

I am on Rebif and taking IVSM three times a month.  My neuro would like to see me on Tysabri but I would prefer it to be on the market longer with more studies as to why some get that brain infection (one in one thousand).  What I am doing is trying to buy time.  I have agreed that if things become worse then I will do it.  I have only been under the care of a competent doctor for six months.  I know the MS is out of control and I know it is a gamble to wait.  I guess my answer to you is...fear...plain and simple.  My doctor has explained to me that she would not allow it for more than a year before taking me off it.  That seems to lessen the chances of getting the brain thing (I am not sure of the name).  Still I would like to take time and continue with drugs with fewer risks.

If things worsen...I will be standing right next to you.  Hell, yes, if it is the only chance of calming things...Without a doubt, I will use it.

[daisy.girl]

jen.....thanks for all your information.

suman.....can I ask why you are still deciding to or not try the Tysabri?

[COBOB]

It really has little to do with the strength, it has more to do with the technique.  Were they the same sequences and the same slice thickness?  If so, it really may not be that much a gain in lesion load.  There is a problem of "image skew."  Keep in mind, that MRI are not x-rays.  They are reconstructions in a computer, based on 3-d maps of the signal strength of proton spins or the difference in signal strengths is the spin decay.    Lots of stuff can change MRI to MRI.  Serial MRIs are the changes over several MRIs, not just from the last one to the current one.  You can not make a comparison like you can with an xray.  If you run one MRI right after another MRI, they may show different images.  It is the nature of the beast and trying to tease the useful data out of the noise.

I would not put too much weight on the gain of 5 lesions in 9 months.  It is really more about how you feel and your clinical picture.  You don't want to be a lesion counter like many of the doctors.  I gained 4 lesions in 6 months. It is not something I worry about.

Bob

[Sumanadevii]

If you go to youtube and type in Tysabri you will find a  young woman that journals about her journey with Tysabri and how much it has helped her.  The drug sounds scary but her results have been nothing short of a miracle considering the condition she was in before starting it.

I know the infusion center I go to, the nurses have nothing but good things to say about the results of those using Tysabri.  I am still in the middle of the road on a decision to begin it or not.  I wish you the best.

[jensequitur]

I think that's a wise choice.  Never tried Tysabri, but I hear good things about it.

When I was first diagnosed, I was in a strange place, emotionally.  I didn't want to take the injections.  I didn't care whether I was getting worse or not.  It didn't help that my copay for Copaxone was $90.  I stayed on it for a year and a half (never saw any improvement in relapses) and stopped when I couldn't afford the copay.  When I started seeing more progression, and a loss of strength in my legs, then I decided that it was time to stop messing around and to do what I could to slow things down.  Fortunately my neuro's office was able to help me find financial assistance for Copaxone, and when I had to stop taking that, they helped me switch over to Betaseron.  

Since you're starting a DMD, make sure that your neuro is keeping track of your progression and number of lesions.  You'll want to get a follow up in a year, to see if your lesions are multiplying or disappearing.  If you're not seeing any improvement, talk to your neuro about another medication.

The MS blogger over at about.com has a low-dose naltrexone journal - you might find it interesting.  I think she's stopped taking it for now.

[daisy.girl]

both MRI's were on a 3T MRI machine.

I have not been on a DMD, I had choose to try LDN, and apparently it has done nothing to help me. My neuro said that I should try the Tysabri infusions now.....hopefully we will be able to slow things down.

I am fearful of the TY.....but more afraid to do nothing with the increase in symptoms and lesions.

[jensequitur]

What was the strength of the original MRI, compared with the new one?  Were they the same?

I think that five new lesions in 9 months is a lot.  I'm assuming you haven't been on DMDs, right?