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Tysabri Users - Past and Present
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Tysabri Users - Past and Present

Hi All...

I was contacted by one of our wonderful Community Leaders to update this thread, since the original one is kind of sparse.  (Here's the link to the original post: http://www.medhelp.org/posts/Multiple-Sclerosis/Our-Tysabri-Users---Past-and-Present/show/658918.)  We are hoping to have a source with more info, so that it can be easily referenced by anyone seeking insight into Tysabri.

Here's some things we thought would be helpful for others to know:

When dx'd?
Other treatments prior to Tysabri?  How long were you on them?
How long have you been on Tysabri?
Do you feel it is helping?
Have you had any side effects?
If you were on Tysabri, did you have to stop the treatment for any reason?  If so, why?
If you stopped treatment, did you have any problems with rebound symptoms?
Have you had your JC Virus status checked?  If so, did the results affect your treatment decision?
And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?

Thanks to everyone who contributes to this thread and shares their story.  These things are so helpful to people who are trying to make a decision about Tysabri.  Feel free to PM me if you have any questions or if there's anything I can do to help.

Bye for now,
Rita  



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24 Comments Post a Comment
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294425_tn?1288531995
I'll start it off...

I was diagnosed in Feb. 2008
Was on Rebif for 6 months prior to Tysabri.
I have been on Tysabri since Oct. 2008 - will get infusion #37 next week.

Both my neuro and I do feel it is helping.  I still continue to have issues related to MS, and some have started while I've been on Tysabri, but we feel it has definitely slowed the rapid downhill slide I was on prior to starting it.

I have had some side effects, but bear in mind I never react to meds like anyone else, lol.  I have had several UTI's, and never had a problem with them previously.  After being on Tysabri for a few months, I had about 3 or 4 months of severe hip pain - to the point I had to use a cane.  (Neuro felt it was not related to Tysabri, but I found several accounts of the same thing with other users.)  I definitely get sick easier than I used to, and it takes longer to get over illnesses.  I now have a type of dermatitis on my face, caused by my body being unable to fight off the normal bacteria that is on everyone's skin.  The dermatologist said they usually see this in AIDS patients and people who are on immunosuppressant meds.  I use a prescription soap on my face daily that helps alot.

I have not had any breaks in my treatment with Tysabri.  Some neuros will only let their patients stay on it for 12 or 24 months .... some have their patients take "vacations" from Tysabri for several months, and then begin it again.  Both my neuro and I felt that it was best to stick with it since it seems to be helping me overall - there has been no proof that the breaks in treatment really reduce the risk of PML, and we were both very concerned about the rebound issue, given how poorly I was doing prior to starting treatment.

I did have my JC Virus status checked.  They gave me the printout of results last month, and I will discuss them next week with my neuro.  I think it says I'm JC positive, but I'm not sure.  Either way, it won't change our treatment plans at this point - we have discussed the issue at length, and I will continue to stay on Tysabri.  

I was initially blind sided when my neuro suggested Tysabri.  I never thought I'd need "the big guns", let alone so soon after my diagnosis.  I began to research it, and read everything I could, from scientific articles to personal accounts.  In the end, we decided to roll the dice because I was going down fast, Rebif wasn't helping and made me sick all the time, and we felt it was best to be aggressive in the hope of slowing things down.  But I have gone into this with my eyes wide open, well aware this could help me or it could go horribly wrong at any time.

My neuro watches me very closely, as does my family doc.  I see my neuro every month - he's the one who actually starts my IV for the Tysabri, so I get to touch base with him and let him know anything going on with me and ask any questions I might have.  Then I have an actual office visit and evaluation with him every 3 months.  I get an MRI every 6 months, or more frequently if I get any weird symptoms that my neuro wants to be on top of.  I keep up with the stats on PML cases and deaths.  My family and close friends know some of the subtle things to watch out for as far as symptoms go .... so I feel we are as vigilant as possible, and if I was unfortunate enough to get PML, I think we would catch it as early as possible.

Rita

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739070_tn?1338607002
When dx'd? 4/2009

Other treatments prior to Tysabri?  Copaxone

How long were you on them? 18 months

How long have you been on Tysabri? 2 months

Do you feel it is helping? As of yet , I haven't noticed any improvements. I was hoping for more improvement in my fatigue levels.

Have you had any side effects? My migraines have gotten worse, I'm not sure if it's related but plan to ask next infusion.

If you were on Tysabri, did you have to stop the treatment for any reason? No.  

Have you had your JC Virus status checked?  I had my JC status checked before the first infusion. I am JC negative.

If so, did the results affect your treatment decision? Knowing it was negative made it easier for me to take that leap to the "big guns".

And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?

I was making such a steady decline and Copaxone did not seem to be helping. I could not take the interferons for medical reasons so my MS  neuro suggested Tysabri. He has used it since it first came on the market and said out of the 88 patients he has treated personally, only one person had problems. That patient was given plasmapherisis and the neuro side effects stopped.

I go to a different MS Center for my Tysabri infusions  where they have a TOUCH program in place. I see a NP or MD every infusion. They ask a list of questions before an infusion and check blood work monthly. An MRI is done every 3 months. With these safeguards in place , I feel as good as I can about taking a drug with potential risks.

Ren
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645390_tn?1338558977
When dx'd? April 09

Other treatments prior to Tysabri?  How long were you on them?
Copaxone for about 1 1/2 years

How long have you been on Tysabri? 4 infusions so far

Do you feel it is helping? yes, my MS symptoms seem to have slowed the last month or so.

Have you had any side effects? YES.  I am thinking of D/C Tysabri.  I continue to have bad respiratory issues (I have asthma).  At the moment I have no voice for about 5 days, and feel like an elephant is on my chest.  Was at the ER this morning. Lots of trouble breathing.

I also am getting more migraines, like Ren.

They told me to "stay away from people who are sick."  I told them I have 4 young kids.  They said just do the best you can.  Not working...

Have you had your JC Virus status checked?  I am JC Negative

If so, did the results affect your treatment decision? yes, I don't think I would have tried it if I was JC +, even though I know the risk is still very low and I am watched over very carefully

And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?

Since DX, I continue to steadily progress downward.  Kept having new SX and things didn't seem to help.  Took me about 6 months until I "OKed" the neuro to go ahead with Tysabri.

Michelle
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198419_tn?1360245956
Bump for new member needing advice - critter
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738075_tn?1330579444

When dx'd?
5/5/09

Other treatments prior to Tysabri?  How long were you on them?
Rebif for 4 months.

How long have you been on Tysabri?
Was on for 12 months, then took a 6 month "holiday", now back on it.

Do you feel it is helping?
I had NO flairs while on it, so yes.  My disability has progressed, mildly, though.

Have you had any side effects?
Hip and knee pain, skin lesions like you mentioned.

If you were on Tysabri, did you have to stop the treatment for any reason?  If so, why?
I stopped for a few months on the advise of my neuro.  Now, I'm back on it.

If you stopped treatment, did you have any problems with rebound symptoms?
I had 2 minor flares - one just after stopping it, and one in May while on Betaseron.

Have you had your JC Virus status checked?  If so, did the results affect your treatment decision?
I had my status checked in June. Negative!  Yay!!  I felt good about going back on Tysabri.

And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?  
My symptoms and progression were out of control, according to my neuro.  He felt this was the best thing for me.  He presented my case to a group of peers, and they agreed with him that I should be on Tysabri.  I'm happy to be back on it, and I will check my JC Virus status on a yearly basis.

Thanks for the update, Rita!
Cheers,
Lisa
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Avatar_f_tn

When dx'd?
debateable... 2000 then taken awayy 2003. I was dx'd with another neuro disease ... given  dx baack 2007 (?) when they realizee  i indeed have two illnesses,


Other treatments prior to Tysabri?  How long were you on them?
copaaxone  1 1/2 yrs
avonex        1 1/2 year
betaserone  + 2 yrears



How long have you been on Tysabri?
10 mos.

Do you feel it is helping?
as far as symoptoms... no
had a scan 4 mos  into   ty. and having new lesions.
will rescan  at another yr   and compair   again.


Have you had any side effects?
yes... headaches, mild   neaausea, fatiguee

If you were on Tysabri, did you have to stop the treatment for any reason?  If so, why? N.A.


If you stopped treatment, did you have any problems with rebound symptoms?
N.A.


Have you had your JC Virus status checked?  If so, did the results affect your treatment decision?
yes... positive.   It   did not effect my decission. Siince II have J.C. my doctor give   me 18 mos   for ty.
We will rethink andI wiill likkely have chemo then.


And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?  
The   other dsrugs have not helped . My doctor com[piles the innternational data for MS Centers   on  pppeople and the manyy various senereos, and we decided this mos. will give me at least some chance    slow things.
I  see two m.s.  neuros and I feel comfortable the  watch me close.

good luck, amo
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Avatar_f_tn
p.s  ...ssside effects.
for four mos at months 3-6, i hhad herpes breakouts. I had not had one in 12+ yrss, so  I believe it is the ty.
And I have had other rashes on my f ace, but they clear up.
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233622_tn?1279338505
When dx'd? Feb 2008

Other treatments prior to Tysabri? Avonex and Betaseron

How long were you on them? 1 year on Avonex, 1 year on Betaseron

How long have you been on Tysabri? Since December 2010

Do you feel it is helping? Not sure.  

Have you had any side effects? Head ache, Sick more often than normal with sinus infections, takes me a long time to get over them.  Had a relapse after having been on Ty for 5 months.  Lost use of my leg and spent 5 days in the hospital on IVSM.  My optic nerve continues to deteriorate. Herpes out break...

If you were on Tysabri, did you have to stop the treatment for any reason? No  If so, why?
If you stopped treatment, did you have any problems with rebound symptoms?

Have you had your JC Virus status checked?  If so, did the results affect your treatment decision?  I am JC neg

And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?

I was having a very difficult time with side effects from Avonex and Betaseron.  I basically could not function because of the fluish side effects.  

LA

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Avatar_f_tn
When dx'd? Feb '09 officially but my flare that lead to my DX started in Dec '08

Other treatments prior to Tysabri? Rebif and Betaseron

How long were you on them? Rebif 9 months Betaseron 6 months

How long have you been on Tysabri? 13 months

Do you feel it is helping? not sure

Have you had any side effects? for the first 9 treatments I would feel pretty good for the first week then back to my static or normal for 2 weeks and the last week was really downhill.

If you were on Tysabri, did you have to stop the treatment for any reason? Yes.

If so, why?  Each time I had a flare I had to be seen by the Dr at UCSF before they would allow me to continue.  I missed one treatment last summer then was off from Jan to March of this year.

If you stopped treatment, did you have any problems with rebound symptoms? No, I actually felt fairly static during my 3 month break with no ups and downs just my everyday sx's

Have you had your JC Virus status checked?Yes

  If so, did the results affect your treatment decision? I am negative so I feel very comfortable with the med

And if you would like to share, how did you make the decision to start Tysabri, given that it has such serious potential risks?

My MS was going down hill rapidly and I was having injection site reactions from the shots.  The UCSF specialist felt Tysabri was the next best step.  I do not know how much longer I will continue the treatment if I continue to have flares.

D
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294425_tn?1288531995
Just a quick update ... I got the official JC virus results, and I am JC positive.  We are still staying with the Tysabri at this point, since we feel it is helping me.  

Rita
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572651_tn?1333939396
Rita

So sorry to hear that.  :-(

hugs,
L
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429700_tn?1308011423
I'm sorry to hear about this development.   I do know know that this is the virus that causes PML, but what does it mean to be positive for JC?  Do people normally carry this virus or is this something that you were exposed to with a weakened immune system on Tysabri?

Is there any kind of medicine that you can take as a preventative?

As I've mentioned, my sister is taking this drug.  I am wondering also what going to happen at my next visit as I've had new lesions show up on my MRI.  Maybe I'll stay on the same medicine, but seeing what my doctor's done in the past, he may opt for a different DMD.  However, I have latent TB which may not be such a good thing to go on a DMD that lowers the immune system.
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198419_tn?1360245956
Rita Girl -

You brave woman you! You'll beg do differ for sure :)
But you are, you truly are!
Sorry for the positive, but hope they watch you constantly.
xoxo
shell
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294425_tn?1288531995
Lulu,
Thanks, but it's really no surprise - I've been running on the assumption I was positive all along, since it's so common.  That's why it's not changing our treatment decisions...

Shell,
Nope - not brave at all.  Just realistic and practical, lol.  We assume the Tysabri is still helping (unfortunately, nobody has the crystal ball), so we don't want to rock the boat.  Going off Tysabri carries some risks of its own, and there aren't alot of other choices for me at this point in the game.  And my neuro DOES watch me closely - he's the one who starts my IV each month, so I get face time with him, which is reassuring to both of us.  I get to ask questions and tell him anything that is going on, and he doesn't hesitate to investigate anything that is remotely suspicious.

You guys are so sweet ....
Rita
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294425_tn?1288531995
Deb,

I am certainly no expert, but this is what I understand from reading as much as I can and from discussing the issue frequently with my neuro ...  if anyone has any more or different information, please speak up, so we can all keep learning more.... :-)

The JC virus test detects antibodies to the virus - so if you are positive, it just means that you have been exposed to the virus at some point in your life.  Initially, they thought up to 80% of people were positive, because it is such a common virus, but now what I've read pegs it more around 60-70%.  Once you are exposed to the virus (which often has no really discernable symtoms (symptoms) initially), it then remains dormant in your system.  As far as I know, there is really no way to tell when you were actually exposed to the JC virus, but apparently it is most common in childhood.

For most people, carrying the latent virus is no problem, because the immune system keeps it in check. It only sometimes becomes a problem when the immune system is compromised for some reason, thus allowing the virus to be re-activated.  Prior to Tysabri use becoming more common, most cases of PML were seen in AIDS patients.  There are a few other meds that have seen associated cases of PML also.

The JC virus test was developed as part of a clinical trial to hopefully gather enough information from many people to be able to help stratify the risk for PML when on Tysabri.  At this point, though, there are no hard and fast answers.  The assumption is that if you are JC positive, you stand the CHANCE of developing PML - it certainly doesn't mean you will develop it.  

One of the questions, though, is that if you initially test JC negative, could you be exposed to it later on, since it is such a common virus?  It had generally been assumed that if you are JC negative, then you wouldn't be at risk for PML - but there was recently a case of PML where the patient tested negative for the JC virus.  This was after the patient had been treated with plasmaphoresis, so it is hard to tell what part that played in the test results.  But when I discussed it with my neuro, his feeling was that even with plasmaphoresis, the JC virus still should have shown up, at least to some degree.  They currently test for 3 variants of the virus - perhaps there are more variants that we are currently unaware of?

For me, (and that certainly doesn't mean I'm right, lol), the bottom line is that there are still no concrete answers regarding the JC virus and PML risk.  I expect that over the next year or two, as more and more results come in and can then be compared to documented PML cases, we will learn more ... so at this point, we just continue to make treatment decisions on all the other factors we have used to evaluate the situation up to now.

I hope things are going OK with your sister and the Tysabri.  And hopefully you won't have to consider that choice any time soon.  I honestly don't know if being TB positive would mean you couldn't take Tysabri.  Let me know if you find out about that, and feel free to PM me any time... :-)

Talk to ya soon,
Rita

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572651_tn?1333939396
Rita, you always make your voice sound so calm and informed it makes me feel better to read your responses.  I appreciate your efforts to share you knowledge with us - thanks for your contributions here.

hugs, L
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1842804_tn?1319759911
Thank you all for sharing! I'm waiting for my insurance to go through, then Solumedrol to wash out and I might be on tysabri in a month or so. I'll most probably have more questions then so I'm very happy to know the place where to ask them :)
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198419_tn?1360245956
Bump!

New users - please add!
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1992527_tn?1326999476
I had one Tysabri treatment on Nov. 1, 2011.  Felt great for 2 days.  On day 3 I awoke with a bad headache and bumps the size of mosquito bites all over my face and neck, plus a huge, dark red circle on my right cheek.  The Dr. stopped the treatment forever for me because of the extreme reaction.
I was diagnosed with MS 20 years ago.
Been on Avonex, Betasaron, Rebif, Copaxone, Tysabri, and now, Copaxone again.
I tested negative for the JC virus, but scheduled for an MRI very soon.
Looking into taking legal action against the manufacturer of Tysabri who have settled out ot court numerous times due to the PML and skin scarring Tysabri has caused to people.
It is now 1/19/12 and the skin reaction has caused my skin to turn blue and purple...................I never had skin problems befor Tysabri.
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1831849_tn?1383231992
When dx'd?  10/2011

Other treatments prior to Tysabri? None

How long have you been on Tysabri? 2 Infusions to date

Do you feel it is helping? No big improvement, but no further deterioration. I suppose that's Tysabri's job :-)

Have you had any side effects? No side effects of any kind.

I have been tested for the JC virus, but don;t officially know that I'm negative. I am assuming that If I were positive my doc would have mentioned it :-)
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Avatar_f_tn
When dx'd? March 2011
Other treatments prior to Tysabri?  Betasaron, Copaxone
How long have you been on Tysabri? Just had third infusion
Do you feel it is helping? don't know yet
Have you had any side effects? Headache and fatigue but only for a day
I am Not Jc virus positive
I was on betasaron and switched due to a relapse, tried Copaxone next but stopped due to hair loss. Tried betasaron again but had another relapse.
A positive is I don't have to give myself shots, I like the once a month treatment.
I am hoping the Ty will work well and slow down the amount of relapses.
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198419_tn?1360245956
BUMPing for new members and/or users!
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Avatar_f_tn
I'm JC+ and on Tyssbri
Dx 2011 but neuro feels I've had MS since 1981

taking steroids before each infusion due to side effects but neuro wants me to stay on it, feels he can work past the side effects.

Tysabri is only DMD I've every been on
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1337734_tn?1336238191
Hi Rita,

Thank you so much for bumping this thread! As you know all this info is so helpful foy my Tysabri decision making.

As always, you are the best!
Talk to you soon,

Deb
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