I was originally diagnosed with primary progressive multiple sclerosis in May 2007, when I was 26 years old. That diagnosis was changed to progressive relapsing multiple sclerosis in October 2007, when I had an exacerbation.
My neurologist has never been completely comfortable with my diagnosis, because I don't display "typical" MS in many ways. My first MRI showed more lesions along my cervical spine than in my brain, but my spinal tap displayed (?don't remember?) that is attributed with MS. I originally went to the doctor because I had a limp that everyone else- not me- had noticed was getting worse. I thought I needed a knee brace. : ) He urged me to get a second opinion, which I did- and that neurologist agreed with him- definitely "not typical", but "what else could it be?". We had already ruled out motor-neuron disease, because they stuck a bunch of needles in me and said that "it is not motor neuron disease.".
After my first exacerbation in October 2007- when they changed my diagnosis to progressive relapsing MS- my doctor put me on Novantrone, which is a type of chemotherapy. I had one dose every three months, and after I had a total of three doses, I weighed 98 pounds (I'm 5'6"), so we had to stop. I've been having steroid infusions since, and now I have one steroid infusion, once a month. I used to do three days of the steroid infusions once every three months, but the effects wore off before the three months were over. I weigh 120 now- much better. : )
That was over a year ago, and my disability has progressed much since May 2007. My right leg hardly works at all anymore- and my right arm went, too. I still walk- barely- with those magical AFOs on both of my legs- although it seems that I need to get a TAFO for my right leg soon (TAFOs go up to the thigh, rather that stopping below the knee like an AFO).
I have had MRIs every six months since my first one, and they have shown no new lesions since October 2007, when I had my exacerbation. I saw my neurologist about three weeks ago, and mentioned to him that I was disturbed by how quickly the function in my right arm- and hand- was going away. He agreed, and wanted me to have another MRI. I told him that I had just had one a couple of months ago, and he said "that was of your brain- I want to order one of your cervical sine, since that was where most of your activity was originally occurring". Apparently they had not looked at my cervical spine since May 2007- only my brain- knowing that most of my lesions were on my cervical spine.
I had the MRI, and a few days later his nurse practitioner called to tell me that one my my original lesions- at the C2 level of my spine (base of the brain)- has been growing, and "we need to do something, because the spine is not forgiving. What do you know about Tysabri?". This is the lesion that has taken away most of my right side- that's my assumption, not theirs; "it varies", you know ; )- so I can imagine what the implications would be if I were to do nothing.
With Tysabri, people have a one in one thousand chance of developing PML, a bacterial infection in the brain that could kill you or- guess what- leave you severely disabled. Apparently PML is a demyelinating infection, too- to add an extra level of irony. My chances of developing PML are higher, because of the chemo. My other option is to keep doing steroids once a month- letting my body deteriorate.
I am pretty sure that I am going to try the Tysabri. Does anyone have any thoughts or experiences to share with me about any of this?
Thank you all so very much, and keep your chins up.
Hi Ellador, andwelcome - you have found a great community of very knowledgeable MS patients and caregivers.
We don't hear of PPMS being rescinded very often - thank goodness your neuro wasn't afraid to change the call/
We have really kicked tysabri around here - if you search this community with the name you will find lots of other posts.
There's a lot I don't care for about Tysabri and here's the short list - they made over $1 billion in revenue off this one drug last year. Thats an obscene amount of money. They recently have been accused of under reporting the number of PML cases in Europe - if this was done intentionally, that would border on criminal.
Now even though the above are strikes against biogen in my opinion... if it were me, I think I would still take the tysabri if faced with these types of options. I am older, my kids are grown, and I don't have near the responsbilities I had when I was younger. Its a risk I would take to keep the MS from progressing. But I am a strong believer in quality over quantity of life.
Doing nothing really isn't an option, and in some instances tysabri is the only option left. I see it as fighting with whatever means you can get your hands on. I hope this makes sense.
We do have a few people here on ty, but we don't see them here often.
Anyway, that's my two cents for what its worth.
take care, and I hope to see you around here again.
I'm not a Dr. but progressing rapidly and a-typical MS is a situation where Drs will explore other possible causes. So, I'm not surprised to read the 2nd opinion Dr. said atypical but what else could it be... That's a good thing, and I wanted to reiterate it here because I'm guessing you should have hundreds of mimics ruled out by now.
That said, I'd like to steer you to our "search this community feature." It's located on the right hand side of the screen and above the recent activity box. In quotes type in "tysabri user" You will find past discussions of the med. and some of our forum members use and a few too who are in the beginning phases of starting.
If you have a problem doing this, please hollar, I'd be more than happy to list these discussions here to make it easier for you...
There have been major debates over the last few weeks regarding the use of Tysabri. Biogen originally said that there were 43k+ patients using the drug, and now they have said that it is 60K+
They are now talking about taking a ‘holiday’ from the drug for people who have been on the drug for over 20 IV’s
My Son who is a Dr of Chemistry wrote a report for me, which is posted in my journal. He works for GSK, and has access to many factors.
My neuro wants to put me on Tysabri, but at the moment I am sitting on the fence, just waiting to see what happens. They are talking about re-calling it from the EU market.
I spoke with my Son, who has said that they are working on an anti-body for PML along with pre-testing also, which includes blood and urine test to see if we cariers of the JC Virus. 90% of the worlds population carry the virus.
My sister has had about 20 Tysabri infusions. She was pretty disabled from the onset of the MS when she took a bad fall and has not been able to walk without aid since. Her MRIs were not showing any progression of MS since starting the Tysabri for a really long time. Plus, she tells me that she feels much better (more energy) after the Tysabri infusions. She starts to notice that she isn't doing well right before her scheduled infusion. So, something appears to making a difference.
However, she's most recently been showing some advance in her symptoms. She's unable to hold anything in her left hand, etc. She now has a black hole, but no new lesions that showed up in her most recent MRI.
Before Tysabri, she was taking Rebif, and her MRI was showing advance in lesions. I think Tysabri has helped to slow down her MS, and if you ask my sister whether or not Tysabri has made a difference, she would most certainly say it had.
For those of us with MS that have a more aggressive disease course, it's nice to still have an option available for us. My sister is monitored closely for PML, and if she's having an infection that isn't being controlled with antibiotics, her doctor has her hold off on that month's Tysabri infusion. I think if Tysabri was pulled off the market, it would crush my sister's hope of every improving or stopping the disease.
If my disease advances, I probably couldn't take Tysabri (or Norvantrone for that matter)--I react positively to TB tests. However, if I didn't have latent TB, I would go with Tysabri based on what I've heard from my sister.
However, the risks of PML (especially in light of having had chemo) should be weighed very carefully. The new, safe, and very effective treatments are just not getting here fast enough!
This is a very hard decision to make. Make sure you do all your research. There are some huge risks, but there are also huge benefits. For many it is wonderful. I hope you find the information you need.
I failed Rebif (according to my Neuro) and my last attack that I'm still getting over, has left me with some amazing spacticity and a R leg limp. I've had 3 flairs in the last year.
I've been off the Rebif since 8 Nov., and the plan is to start Tysabri in January. Needless to say, I'm more than a little concerned. I'm in my early 50s, and expecting my first grandchild in August. I want to have lots of fun with this kid!
Like Debs ("Shermay"), I've been combing every website I can find trying to find out as much info as I can. Pulling Tysabri from the EU market is daunting to me. This isn't an easy decision, but I'm going for it, just because it's success rate is better than anything else out there. I'm confident in the 20 or so months I'm going to give this stuff, they'll come up with something safer and more effective.
I was once strong and athletic, and I'm not that way now. I'm not expecting to ride the Tour de France or anything, but I would like to keep riding my bike as long as possible. I've been practicing Yoga since I was 12, and now I find it essential to practice as much as possible to deal with the spasticity.
Good luck with your decision, and, if you live in the US or France or UK, they watch you like a hawk, and take you off if ANYTHING is amiss!
I just completed my 41st Tysabri infusion the day before Thanksgiving. For me, since restarting the medication in October 2006, I have not had one single relapse nor any new lesions on my recent MRIs.
When I was originally on Tysabri in February 2005 (before they voluntarily remove Tysabri from the market temporarily), just two weeks after my very first infusion, my right drop foot was gone, my limp was gone, my optic neuritis completely cleared up, my slurred speech was gone, and I put my walker away--only using my cane for balance which had not completely returned at that point. I was so excited!
Unfortunately, on the day I was due to receive my second Tysabri infusion, the manufacturers (Biogen & Élan) temporarily removed Tysabri from the market so that they could review all of the case histories of persons taking Tysabri at that point (the general public & all the trial patients), and review all of the Safety Data so that they could resubmit Tysabri to the FDA for approval once again (Tysabri is only the second drug to be reapproved by the FDA). I was one of the MS patients that spoke before the FDA AC (via videotape) in March 2006 in an effort to bring Tysabri back to the market. I'm so very grateful that we all succeeded!
During those 18 months that Tysabri was off the market, I was hit by a severe relapse which ultimately put me in a wheelchair. And even though I am still wheelchair bound (that damage is probably permanent now), my Quality of Life has greatly improved and my MS is now stable, thank goodness. Considering I have had MS for almost 35 years, I am so very grateful that there is a medication out there that can prevent further relapses by 68%, slow the disease process down, and even show some MS patients benefiting greatly with symptom improvements, providing that the prior damage is not permanent.
Tysabri was the best choice I ever made for myself, and I don't mess my Avonex shots, nor my Copaxone shots..., I don't even miss all of their side effects & injection site reactions, woo hoo!
I wish you nothing but the very best Ellador, and I support you and your choice no matter which medication you choose, just please, make a fully informed choice (Knowledge Is Power).
One thing that people often don't consider when looking at Tysabri is the chance that they will continue failing at a steady rate if they don't do something. I can see by your wording that you have looked at this.
But, for every risk of a bad outcome there is an opposite risk to consider.
What is the worst thing that could happen if you take Tysabri? Well, we think we know the answer. The absolute worst thing is the "1 in 1000", or perhaps slightly higher, chance of dying from PML. However, we have some good evidence that the TOUCH surveillance program is learning to pick out at least some of the people who may be at higher risk for PML, stopping the Tysabri and trying preemptive measures to get the Tysabri out of the system.
What is the worst thing that could happen if you don't do anything - except steroids - and what is the risk that it would happen? The absolute worst thing is continued disability until you have no ability to move or care for yourself, including breathing. What is the risk of this being the outcome if you are already heading toward that path? I would guess that it is higher than 1 in 5. Of, course I made up this number. It might be 1 in 2 or it might be 1 in 20. I don't know how many people start to get really severe disability and then have their disease miraculously halt. My point, is that your path is pretty likely set (in my mind). The chance that you will continue to deteriorate is incredibly high.
I - if it were my decision - would look at these two risks and see that my chance of deteriorating to the point of not being able to enjoy my grandkids, is sky high, compared with the much smaller chance of PML. Yes, life is a cr@pshoot sometimes.
One risk cannot be evaluated without looking at the other in my mind.
I understand the hope that during my deterioration "they" will be able to identify the treatment that will halt rapidly progressive disease. In all honesty, we have been hoping for a long time, and are always told it is just a few years off. That assessment hasn't changed in the 2 and a half years I've been on the forum.
Clearly, if I felt that I was headed downhill and there was a chance I could slow it - I would go for the Tysabri - for MYSELF. Each person, though, must weigh the risks and decide for themself. But, becoming educated doesn't just mean trying to sort out the real Tsyabri risk, be it 1 in 1000, 1 in 2000 or 1 in 500. It means also looking at the other side of the equation.
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