The Rebound Effect - Tysabri

Everyday living
1

Hi.

I have been on Tysabri for aprox. two (great/relapse free) years; however I was tested positive for the JC virus almost three months and given the choice to either remain on Tysabri OR pick one of the injections.

I was chatting to a lovely person on this forum a few days a go who mentioned something called The Rebound Effect which occurs if someone ever decides to stop taking tysbri. According to studies, lesions double up in around three/six months…the MS hits you all at once.

My nerologist & MS Nurse never mentioned this to me before I started tysabri - its something i DEFINITELY would liked to have known before selecting this treatment!

Have you heard about the rebound effect?

Thanks xx

2

Hi Dixie

Me again

The info I sent you was only form a small study I asked my ms nurses when I was getting my infusion about it they said they never herd tell of it and 1 said they thought they did I’m feeling great at the moment I’ve been on Tysabri over 3 years and if there was even a small chance of going back anywhere near as bad as I was before Tysabri It would scare me.

I know where your coming for stopping Tysabri then finding something like that out I would freak me out but maybe there’s nothing of it.

I hope I didn’t worry you showing you that information.

I think they need to do bigger studies.

Mark xx

3

I’ve not heard of this,but I’m due to start Tysabri next month all being well,but I think this can happen if an mser stops any DMD. It happend to me when I stopped Copaxone to try and concieve,I had a massive relapse which paralyised me for a year,the new neuro I saw when it had finally finished said it was more than likely caused by stopping the DMD and said he had other paitents who had the same after stopping one of the DMDs,reguardless of which one it was,so what I’m trying to say is that this probably isn’t esclusive to stopping Tysabri.

Hope this helps a bit.

4

This came up a year or so ago when a small study was done that suggested if you stop Tysabri it actually make MS progress 3 times as fast it was before starting.At the time the MS Society said the study was too small to give any meaningful information.

Since that time I have never even been able to find the study on the web.

I really never came to any conclusion what the truth was.

5

I did a little bit of digging on the net, I still could not find the study I referred to but found this article mentioning it.

http://ms.about.com/b/2011/02/09/the-tysabri-rebound-effect.htm

Sorry I really do not know a lot about Tysabri since my wife is on LDN, which has totally stabilised her condition, and anyway she would not qualify for Tysabri

If you just search the web for ‘Tysabri rebound effect’ you will find a lot of articles but I could not see anything very conclusive.

Al the very best what ever you decide to do.

6

David,

Here’s a link reporting about a small study done in Amsterdam in to the affects of coming of Tysabri is from an American news paper they don’t call it the rebound effect but I think its more or less the same thing there talking about.

http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29212

Mark

7

I did a wee bit of digging too. It seems that there is a rebound effect for interferon too (and maybe Copaxone? It would certainly help to explain the terrible year I had after coming off it).

Anyway - there are a couple of studies of Tysabri rebound effect on the MSRC website. If you go to the following link, press Ctrl and f on your keyboard and then type rebound (into the little box) it will take you to the first rebound written in the text. Thereafter, each time you press enter it will take you to the next rebound in the text.

In summary, there seems to be a rebound effect, but it seems to vary with how long you’ve been on Tysabri (longer is more protective), how long you stay off it (longer is worse) and possibly how old you are (older is better). It may also depend on what you do while you’re off it - there is one study on there that suggests that taking an interferon may reduce the number of relapses however these patients were the ones with milder MS pre Tysabri, so it may well not be true for others. Both the studies that specifically looked at rebound were small studies so it’s hard to know how much faith to have in them. One thing is for sure: the only way not to have a rebound is to keep taking Tysabri, but that’s easy for me to say when I’m not JCV positive and on Tysabri :frowning:

This whole Tysabri “holiday” was never suggested by the people who make Tysabri - it started because some neuros decided it might be a good idea, without any data or research to back them up! I’m not sure that there is any research to say that taking a “holiday” actually protects against PML anyway, if you plan on going back to it after the break.

The fact you’ve been on Tysabri for more than 2 years may help protect you from rebound? The other thing to consider is how bad your MS was before Tysabri. If it wasn’t so bad, then perhaps an interferon would help to reduce any rebound effect? Absolutely no guarantees with this though.

If you come off Tysabri and you have a nasty relapse, will your neuro be able to get you back on it straight away? Will your neuro guarantee you regular (3 monthly max) MRI scans to check for new lesions? And if there are some, get you back on Tysabri?

This is probably a stupid question, but I’ll ask it anyway(!): have you ever had steroids? If you haven’t, then your risks of PML, even with JCV+, are much lower. (See Multiple Sclerosis Research: Natalizumab - Safety Update December 2011)

I hope this helps. Good luck with your decision.

Karen x

8

Hi Mark,

Had a look at that article, and although it suggests there is a high likelihood of deterioration if Tysabri is stopped, the only way that wouldn’t be true is if it wasn’t effective in the first place.

It’s no surprise that stopping a highly effective treatment results in (predictable) deterioration.

What it doesn’t say, however, is that the deterioration would be “with a vengeance” - i.e. any worse than if the person had never had Tysabri.

I don’t think there’s any doubt that stopping will give rise to a higher risk of relapse.

But if it’s not any higher than before the person took Tysabri, it’s not a “rebound” effect, and Tysabri hasn’t made the MS any more aggressive.

Tina

9

I have heard of the rebound effect but I don’t know much about it. I have been on tysabri for just over a year and I have recently been thinking that I would like to try to come off it. This is mainly because I am JC positive. I had an appointment with neuro last week and he mentioned that the risk of PML would go up over the next 6 months or so. Although he wouldn’t talk about the possibilty of coming off tysabri. He said that we would talk about it at the next appointment but that will be when I am at the highest risk of PML. I felt pretty dissapointed with the lack of discussion. I think t is partly becasue it is all a bit unkown as it is such a new drug and there isn’t much data. I do feel worried though as have taken steroids quite a bit too.

10

Hi Eski,

I don’t know If I’m JC positive or not I’m on Tysabri over 3 years now and its the best 3 years I’ve had since getting MS.

My neuro did ask me if I was happy staying on Tysabri and If I had any worries I told him I’m really happy and I told I’m the only worry I would have is if I was told I had to come off it.

He knows how bad I was and the life (if you could call it a life) before Tysabri I had so many steroids each time I had a relapse (every 4 or 5 weeks) it left me bed bound and the only thing got me out of bed where steroids but the last 3 or 4 courses only got me well enough to get out of hospital in a wheelchair.

Now I’m walking and have a life and never had a relapse since starting Tysabri my MRI’s show my MS is now stable and the reports say there’s been a marked improvement

You hopefully can see my reason for never wanting to come off I told him there’s really no point in even doing the JCV test on me even if its positive (which more than likely would be most people on Tysabri or not have it anyway) I’ll not be coming off I know a few even some that are on Tysabri longer than me that are JC positive and there still taking Tysabri they said the small chance of PML or the chance there MS would get them and most likely would they know what that’s like they’ve been there.

Mark

11

hello,

my sister has been diagnosed with MS for over 8 years now. and has been recommended tysabri. Her last scan showed active lesions. i just read about the rebound effect and am freaked out…help!!!

12

One thing at a time. The priority for your sister right now is, most likely, to get her highly active RRMS under control. The big risk that needs to be managed right now is the risk of RRMS taking permanent lumps out of her. Uncontrolled MS is the clear and present danger for your sister.

Longer-term risks like potential rebound effects way down the line probably fall into the ‘we’ll cross that bridge when we come to it’ category.

It is very frightening when a person one loves is facing these difficulties and dangers, and the support of friends and family is a blessing. The best thing you can do right now is probably just to be there for her and take your cue from her about how to help. And posting questions on here is a good way for you to share your own distress and worries - MS affects the whole family, that’s for sure, and we’re all in the same boat!

Alison

p.s. I have been on Tysabri for some years now.

13

Here’s a paper showing that you are much more likely to get rebound relapses if you have a washout period (ie a break of 3 or 4 months between stopping Tysabri and starting Gilenya. The authors explain why you see increased MS activity when you stop Tysabri. They also say that steroids, interferon beta, GA and DMF (dimethyl fumarate) have not been shown to be effective at stopping rebound relapses after stopping Tysabri.

http://multiple-sclerosis-research.blogspot.com/2015/06/clinicspeak-did-we-need-trial-lasting-4.html

14

Hi

I stopped taking Tysabri July 2015 dues to increase in risk as i am JC+ from the start, this was my decision and not my consultants as i had no new lesions whilst on the drug. I felt better in myself when in the next 7 weeks less anxious, no brain fog and i then started Gilenya which i was on for only 7 weeks as my bloods came back high for liver adn was immediately taken off it. Since then i feel i have deteriorated, increased fatigue, more pain, mobility slower, brain fog etc. I am now waiting for another blood test and then i will have to look at my options again and feel completely bamboozled by the drug options and risks etc, such a hard call x i wish you luck

15

Hi,
I can give you first hand knowledge of this experience. it is indeed very true much to my cost.

I too had been on Tysabri for about 7 years or so, was told i needed to come off due to the high levels of risk factors involved with JC Virus.

About ten months in to coming off I started to relapse. I think I had about 15 relapses - one after the other - it’s left me in a bloomin state I can tell you.

My neurologist decided to put me back on Tysabri now, have been back on for nearly one and half years? two years maybe (not sure sorry), which has stabled my progression but the relapses have left me in a sad state of affairs. Legs, vision, tingling, numbness etc etc etc, you know the score.

so In answer to your question, if you do come off Tysabri, make sure the DMD the give as an alternative is a close match.

However, that is just my own experience. as you well know, everyone is different and it may have no affect on you whatsoever.

xx hope that helps a bit???