Tysabri Rebound

[Stacer]

Hi everyone,
I know this topic has been discussed, and I did read through past posts about the rebound effect. There are enough stories to know it's real. My story isn't much different. Three months after stopping and my symptoms are all heightened.
I was on tysabri for 6.5 years and stopped October 2015 because my neuro thought I may have reached SPMS. The plan at my last appointment was to have an MRI after 4 months (happening in 2 weeks) and possibly start aubaugio if the MRI showed inflammation.
I asked about steroids and was told it wouldn't help.
My question are:
Have steroids helped you through the tysabri rebound effect?
Did you "recover" from the rebound effect symptoms?

I just don't know what to do, if anything. My neuro is an 8 hour drive away, so I can't just go tomorrow. My family doctor is willing to help.

I'm feeling terrible. Arms and legs are weaker than ever. Any advice or words of wisdom appreciated. Thanks!
Stacey

[Myoak]

Hi Stacey,

First, I am very sorry that you seem to be experiencing disease activity that was formerly held in check by treatment.

Often rebound, if it is going to happen, is seen 3-4 months post-Tysabri.

It appears your neurologist was greatly mistaken about how valuable the medicine was in keeping your MS in check, to say the least.

You didn’t say if you were JCV+ or JCV-. But if negative, would you consider going back on Tysabri, or perhaps even insisting on it?

I would have to think you are positive; I would hate to think any neurologist would take someone off a med which was having the desired effect against MS needlessly.

And, if you are positive, why in heaven’s name didn’t your neuro put you on dose extension as a preferable option to discontinuing an effective medicine?

Extending time between doses is having success in reducing risk of PML.

Please Google: “Increasing Tysabri Dosing Interval May Cut PML Risk” it is a MedPage article so you may have to sign in but the site is safe and has medical news only.

IMO, you should see your neuro as soon as possible. It can only help. I know you are scheduled for MRI in two weeks but I would try advancing the appt.

That may be difficult in Canada, I have no idea. But it seems sooner is preferable to later.

Sincerely, you are in my thoughts and prayers, Stacey.

Best to you, girl, hang in there!

PS... the steroid treatment depends largely on the personal view of the treating neuro. Some use steroids aggressively, some don't. Often they are given for a flare-up which you seem to be having post-Tysabri. But not all neuros are convinced steroids help. Everyone is unique and it would be best to speak with a medical professional about the matter, IMO. It is possible steroids may weaken immunity against the JC virus; that might be your neuro's the thinking. Of course, if you are JCV negative and not getting steroids for a flare-up you may need a new neuro, IMO.

[abcima]

My experience with Tysabri

I agree with what the previous reply was. I have had MS for 25 years (am now 49) and been on Anovex, Copaxone, Tysabri and now Tecfidera. I was one of the unfortunate ones who is JCV+ and had to go off of Tysabri (two times). Nothing has helped me more that Tysabri so after I was off it for a few years I convinced/and begged my Doctor (in Canada) to allow me to again use Tysabri because it was what helped me most. They had come out with a way to determine numbers and monitor the JCV more closely. After being on it again for another two years and feeling great my numbers increased to an area that was too high to continue on it..long story short, I am sorry to say I am doing noticeably worse. I agree with everything said previously that if you can find a way to stay on it, do so. Definitely get your JCV antibody numbers checked through a blood test. I had to drive to Bellingham to do it because it was not available in the States but that was a year and a half ago....Good luck to you and all the best!

[lindaincolorado]

Hi Stacy,
if I read your post correctly, the only reason your neuro took you off Tysabri was because he suspected you were spms ?? I am so sorry To my way of thinking that is not a valid reason. I would do everything I could to get back on Tysabri. Then if you accomplish this I hope it works for you like it did !!!

I fired a couple neuros who wanted to take me off Ty BUT, I live in the U.S. and was able to find neurologist who allowed me to be my own advocate and who worked with me.

Good luck..I wish you my best
Linda

[Myoak]

Hi Stacey,

Linda is so right about being your own advocate and abcima shared good thoughts, also.

If you don't mind, I'll share some of my own thoughts...

I looked at some of your previous posts to get a better understanding of your situation. I see that you have had CCSVI procedure so you appear unafraid of being involved in treatment decisions. I think you are a courageous person willing to consider all options.

From reading your posts it seems, to me anyway, that your MS has been on the aggressive side and Tysabri has held it in check somewhat, although you appear to have had some flare-ups even on Tysabri. Is that correct?

Also, your JCV titer was 1.3, as I recall. Typically, that number bounces around a bit but under 1.5 and on Tysabri between 48 and 72 months the estimated PML risk is 1 in 769. Of course that number was derived from those getting infusions every 4 weeks. There appears to be much less risk if time between doses is extended which, in theory (so far zero cases of PML in those doing dose extension), gives time for the immune system to recoup surveillance activity against the JC virus. Going 5 weeks between infusions might be something to consider.

To me, in reading your posts Stacey, it seems that you fear PML rather strongly, at times; I believe everyone on Tysabri feels the same. Sometimes that fear just has a way of getting to us, whether patient or caregiver. What we try to do in our household is be as cold-blooded rational as possible balancing the legitimate and very real prospects of PML on one side with the very real prospects of increased disease activity without Tysabri. Not an easy task but it is critical for our well-being to be clear-minded.

Tysabri, by being so effective, for some can lull us into a sense we don’t have MS or have a benign course of it. I have seen a bunch of people over the years who mistakenly thought their MS was not so bad and discontinue Tysabri only to discover it was keeping the disease in check and did not fare well when not taking it.

Since there are no FDA approved DMTs for SPMS a critical problem can develop for anyone tagged SPMS. Many believe insurance companies have legal grounds on which to decline payment for non-approved treatments. Doctors in the US should be very, very certain they know what the ramifications of changing the diagnosis from RRMS to SPMS may entail… it may leave someone without insurance coverage.

For doctor to suggest that someone “may” have become SPMS is apalling, IMO. Yes, it may seem like SPMS (a slow gradual progression w/o flares) if you have been on Tysabri a number of years with no exacerbations. But it may have been that Tysabri was doing its job well with RRMS not that a transition to SPMS had occurred.

I will attempt to post an estimated PML risk chart at the end of this post, maybe it will copy and paste, maybe it won’t.

But I’m going to urge everyone interested to use the link below or Google the following title: “Anti-JC Virus (JCV) Antibody Index Differentiates Risk of Progressive Multifocal Leukoencephalopathy (PML) in Natalizumab-Treated Multiple Sclerosis (MS) Patients with No Prior Immunosuppressant (IS) Use: An Updated Analysis”

http://www.ncbi.nlm.nih.gov/pubmed/25273271

The full paper is available. I strongly urge you to download and save it. This is the kind of info which has appeared on the internet before and has been taken off. I don’t think that will happen with this study but I was wrong before and an article did get pulled so I know it has happened; I had a first-hand experience of it, too.

This week-end is a good time to save the full study if estimated PML risk figures are important to you. It may or may not be there when you want to source it in the future, so I recommend downloading it for free it while it is possible. If they do pull it and only the abstract is available it won’t have the charts.

Stacey, do forgive me if I have been unkind or so direct I seem uncaring. I do care, that’s why I post. You can pull through this. If there is anything I can do to help you, I will. You have my thoughts and prayers.

Stacey, the level of comfort your doctor has with any treatment is secondary to your feelings. You are first and have every right to be; it is your life.

Sorry, the chart would not paste!