I was on tysabri for 22 infusions, I am positive for the JC virus, plus I saturate at a higher level than most... 92% after 4 weeks (most have dropped to 60-70% by then). I stayed on it even after testing positive for the antibodies after the first year. I would still be on it if I hadn't gotten c diff last year and had a nine month nightmare battle. I haven't been on tysabri since last July.

I am a little over five weeks post c diff (finally kicked it due to a last resort procedure), and my infectious disease dr wants me to be at least three months with no c diff symptoms before returning to any MS med. I failed avonex and copaxone previously, and I was doing well on tysabri, other than being so susceptible to infections and getting some serious ones a time or two. It did slow my MS though.

My neuro and ID dr are working together to figure out what will be best for me since I'm in a precarious position for the c diff returning. They are looking at an adjusted infusion schedule, going every 6-8 weeks. What we are looking at is whether I am at a high saturation level right from the get go, or if it increased over time. My neuro did a study on saturation levels, and I meet with him next month so I don't have an answer for that yet.

If he says it's possible that it was because of the accumulation of the tysabri over time, then I'm seriously considering returning to it. Sure I have three strikes against me: positive JCV, high saturation and c diff history. But if it can still slow the progress of my disease at an altered schedule, and the altered schedule will lessen my odds of getting PML or c diff again ... I may be willing.

I was on Tysabri for 15 infusions and had tested positive for the JC Virus. I knew I was JC+ yet I continued on with the drug. However, my doctor heard me mention that I had melanoma in the past, and that is when he pulled the T rug out from under me, and took me off Tysabri. So, now I'm off Tysabri and I have some mixed emotions.

Ty was such an easy MS therapy. All I had to do was go to my doctor's office for about 2 hours once a month to receive the infusion. It was a time that I could spend any way I wanted, a forced relaxation period. I enjoyed talking to the Ty Nurse, and the other patients with the same disease as me. I will miss that.

Sure, I was worried about the JC+ dx and taking Ty together a little bit. However, when I look at the number of deaths from PML, I felt it was noise level and not worth really worrying about myself. The chances that I would develop PML were very slim. Some people say even one death is enough for them so go figure?

It's a tough decision you have to make. I wish you the best in determining what is best for you.

Hi Pam,

Glad to hear you responded so well to Tysabri! I tested positive for the JC virus as well, it is my understanding there so many people do. And like you experienced, you can be exposed to the virus at any point even after going on the treatment. Thursday will be my first infusion, but I trust that everything will be fine. Like all treatments for MS, we (the patient) have to make the ultimate decision. Best of luck!

-Maddie

My old neuro would not test people for JC virus. Why? Because 70%-90% of the population has already been exposed to it! My new neuro said "50%" but that is not supported by the mountains of research I have done as a patient. My old neuro said that "it just scares people" if they find out they have the JC virus.

My new neuro wants me to get off Tysabri and take Gilenya, which is also not safe and is less effective. I have no interest in following his advice.

So I have a 1 in 500 chance of dying from Tysabri.....So what? My course of MS is aggressive and disabling. If I had a more benign or stable course without Tysabri then I might consider alternatives, like Gilenya or Copaxone, but I am looking at a probability of being a quadriplegic. Most of my activity is in my neck.

1 in 500 chance of death is not scary to me. 1 in 4 chance of death is not even scary enough for me to consider switching to a less effective therapy. If I had a 50% chance of death and a 40% of living a more normal life for an extra 5-10 years, I would take the 50/50 risk. Being Quadriplegic is worse than death to me, so that is my perogative.

1 in 500 is not fun to think about, but your chances of being disabled by MS are a lot greater than 1 in 500.

Are you willing to accept "life" being paralyzed from the neck down? I am not.


My impression is that they just want everyone on Gilenya because they discovered a very interesting new mechanism of action, one that suggests that the immune compromising effect isnt the primary mode of action.

....Well that is very interesting and all, but it also suggests that the immune suppression is unnecessary, and its STILL less effective than Tysabri.

Forgive me for being selfish, but I am going to take my chances with Tysabri which is the most effective medication. Somebody else can go with the less effective treatment so that their data can be collected for better treatments in the future.

Quality of life matters. 1 in 500, even 1 in 10, are acceptable risk levels for the benefits that it offers.


Gilenya can cause heart failure, cancer, increased risk of all forms of infection, migraine/cluster headaches, death, and they dont know what the long term effects are going to be....they know it changes the physiology of your nerve cells.

Not interested in Gilenya.

However, some people who took chemo-drugs cant take Tysabri.

Gilenya is the next best thing for people who cant take Tysabri, but I wouldnt be afraid just because you tested JC+.....Almost everyone is JC+.

Just assume that you are JC positive when you start Tysabri. If you think you can live with the effects of MS and are suffering fear of PML, then go for it I guess, but 1 in 500 is not that bad for its ability to reverse disability and reduce attacks by 70%.

66% down to less than 50% is a significant drop in effectiveness.

I also just found out I am JCV+. I have been on Tysabri since October 2006. I just finished my 71st dose and still going strong. My neuro doesn't seem to be worried about it so I guess I won't either. She doesn't prescribe Gylenia because of the side effects that are also dangerous.

I am anxiously waiting for BG-12 to be approved and I then may consider switching. But as of now I will stick with TY. I can't go back to the shots.

**Sentient---that is exactly how I feel.

(I just answered this same question so I just copy pasted it.)

I'm not on tyrsabri but I will tell you this: my internist dxed me with RA a couple of years ago. My numbers were not high enough to actually formally say I had RA. My doc was of the opinion that I had all the symptoms AND most importantly all the signs.

He put me on Prednisone, which most people would say, dont take that becuz long term effects are not good. It made me sick at first and then after a week I began to feel real good. Not much pain and, WOW!! Talk bout energy levels coming back up! I felt like the old me for the first time in months and I was so happy!

Then I went for my next check up and my doc told me he was not allowed to actually dx me for RA. Only a Rheumy could do that. So I went to the Rheumy and he ran tests and said I did not have RA and he promptly took me off Prednisone. I begged him to let me stay on it cuz it really truly helped me. But he sought didn't and I regret it to this day.

Also about five years ago I was told I had fatty liver...the kind you get from drinking to much or doing too many drugs. Since neither one of those was a problem for me my doc went over my charts. He and another doc consulted on it and they found my liver problem to be due to the large amount of Depakote I have taken over the years.

Depakote is the only mood pill I have ever taken that at least keeps me somewhat stabilized. They almost begged me to quit taking it cuz it would continue to filter through my liver and thus cause further damage. I was adamant about it said no. they told me if I did not get off depakote that within 25 years I would be dying from some sort of kidney disease. But you see I CHOSE to stay on it because in doing so I was giving my sons a real chance to have a real mom. Not one who either cries all day or who goes out partying and drinking all night. So I guess by their timeline I have bout 20 years left.

I'm happy with my decision and YOU should be the one to make your own decision about what type of quality of life you want. Thats usually what it comes down to...quality v. quantity...good luck to you, just go with what feels best for YOU

Love,
Irish

I so want to thank all of your posts. I am glad that you guys gave me valuable comments.

I think I am going to call him and tell him that I have my next Tysabri infusion on the 27th and appt with him after my infusion, that I want my infusion and when I see him we will discuss it.

I do not want to go off it. It keeps me going. I have done Avonex YUCK! done Copaxone only worked for a short term. Only option is Tysabri. Now to get him to still let me have it.

I have had a bad night because of this stupid JC virus, and I do feel more at ease making my mind up to stay on Tysabri.

Thank you for all of your comments I so appreciate you. I so needed your posts
Pam

ok, talked with my neurologist and if i stay on tysabri he wants me to go to cleveland clinic over 4 hour drive... so 4 hours one way, gas,, toll roads and then a chance on dr fox saying no tysabri.,, i am so leaning /falling off the fence on gilenya.... any opinions looked to see if they would do a phone consult... oh no way over 500.00 for it... that i found on their website....

help i am stressed on this one, help

pam

I am on Tysambri and recently took the test but I have not recieved any word back on the results. My neuro and I talked abt what I would want to do in the event it came back positive and I have decided to continue on Tysambri because like someone else said, with the exception of the compromised immune system it has significantly slowed the progresion of the disease. I have tried other drugs with no success. My only alternative would be the new oral meds and who knows what the unknown side affects of that could be 5 years from now. At this point quality of life is more important to me than quantity. I decided if Tysambri can keep me where I am right now FOR ME it's worth the risk. But, it is an individual dilema that has different variables for different people.

pj22, I have been reading most of the posts here. I wanted to mention that if your dr. is making you drive the long distance, you ought to consider talking to the TOUCH people, and asking them if they are able to put you in touch with any closer to your location doctors that they are aware of already using the Tysabri programs with patients. They may be able to get you in touch with another dr. that is closer to you.

I am one who was on Tysabri for 18 months. Had to move, so, I had to change doctors. Long story on that but, now I am back to another dr., and looking at getting back on the Tysabri. however, now I just recently got the results from a blood test and proof that I too, am JC virus positive. However, if I am, then I assume I always have been. Even when I was on Tysabri before. So, I am likely going to talk to the dr. about getting back on the Tysabri. Because, when I was on it, I know the MRI's proved it was slowing down the MS lesion activity. Plus, I know I had more energy each month, plus, I did prefer the Tysabri, versus the other drug treatments.

I also did the Avonex, and did not like it at all...too much yuckies! So, yes, my choice is the Tysabri. Even with the risks. I think it is the better choice!
my humble opinion.

Sherizi

hi Pam, after my nasty progression over the past year, and much research, questions, and calls about tysabri, i am waiting to get the ty started within the next 2 months. i am jc negative, but while waiting for the lab results i decided i would proceed regardless.
Just my opinion, but, ultimately, you have control over your health care decisions. i feel your current neuro is being unreasonable in his/her approach to your problem. the md is putting up a purposeful roadblock to your care, requiring, or trying to railroad you, into refusing the tysabri and making it "YOUR" decision, essentially making ty impossible for you to receive without guilt.
Give the neurologist a chance when you talk to him/her next week, try to find a solution that works for you both, write everything down you want to say so you can't be intimidated, listen to responses, and think about it overnight.
i feel, that depending on how you feel after this "talk, mulling over" session, it may be time to find a new neurologist...we all know nothing with this disease is ever easy, but your neurologist should work for you not against you. good luck and strength with this difficult path you are on, many hugs, connie

My biggest war is Tysabri and JC virus. I flat refuse Tysabri due to them refusing to test me for the JC virus. So finally after 5 years and all the other MS drugs killed my pancreas and am now having issues with that they are consenting to test me for the KC virus. OK with everything now wrong with me due to meds they gave me to treat the MS, I am at odd with trying Tysabri if my test comes back negative. I most certainly will not do it if I am positive, that's to high of a risk for me. I will also be tested for the JC virus twice due to false positive and positive false testings. I want to know for positive before even considering that drug.

With a damaged pancreas I am now a diabetic. Why should I ask for more issues. Any one who has taken any of the MS modifying drugs should have their pancreas scanned to see if it is affected by the Interferons, Steroids, Copaxone and so forth. I went into the FDA site and typed in tho their search "Drugs that cause pancreatitis" I was totally shocked to read that most of the drugs I have been put on can cause it. Actually the number was 78 drugs I have taken even for a short time could have caused it. But the ones that cause the most damage is Sil Umedrol - all interferons - Copaxone and Neurontin. So protect your pancreas, the pain from that is in some ways is worse. Not to mention the fear that goes along with it.

take care and take care of your internal organs.