rebif and emotional disturbance

A board to discuss the Multiple Sclerosis modifying drug Rebif

rebif and emotional disturbance

Postby msmommie » Wed Feb 13, 2008 12:08 pm

I want to raise a topic and see if anyone else and/or people close to them have noticed a certain side-effect of rebif.

There was a thread on here a while ago about rebif and depression and also anxiety and panic attacks. This tipped me off to re-assess what I had been observing in a friend who was on rebif and had recently been put on the higher dose. The situation started gradually and since I did not know about the change in dose or the possibility that it was a side effect I did not associate the two. (That means, thanks to those who put up the threads, without you, life would still suck for me and my friend.)

By 'situation' I mean mental-health side effects other than clear-cut panic attacks or clear-cut depression. What I observed was unusually anxious and emotionally overwrought behavior, stressing out about things that normally would not have been stressful to that person, a lack of emotional stability, a lack of warmth and confidence and ability to empathise, constantly worried and obsessive about the future and about people around him, etc., constant hurt feelings and getting into arguments and fights. It became weirder and weirder until he seemed like his own evil and very difficult twin.

The situation became so upsetting that I finally pointed out that I thought this constant anxiety was a side-effect. At first the person concerned was angry but later (when he could think about it not on the same day or right after a shot) he became convinced that there was something to my hypothesis and chose to go off rebif. He actually went through all his e-mails and all the fights he had had which were unusual for him and found that they almost all had happened on a M/W/F evening (after a shot) and that the days when he felt relaxed and more himself were almost always Sundays, i.e. on minimal rebif levels. He has now been off rebif for a full week and can sleep properly again and feels much more himself and is no longer engaging in obsessive or weird behavior.

I wanted to post this especially for those who themselves might feel they or their loved ones have changed dramatically and might usefully question whether this is a side-effect even if you're not seeing full-blown panic attacks. Also, if my friend finds he needs to stay off rebif to be happy in his life (and be able to sleep), and since he does not have any major MS symptoms, is this a viable option? And a technical question: how long does it take for rebif to clear completely from your body?

Thanks so much for any answers or feedback, I have been very very alone with this since the person concerned mostly doesn't tell people he has MS and with all the weirdness has been getting isolated. Talk to me, people, talk and talk!
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Postby GeoGuy » Wed Feb 13, 2008 6:22 pm

msmommie -

I was diagnosed in January of '07 and went on Rebif almost immediately. I have always been a very laid back guy - easy going, never worried about stuff. I started experiencing anxiety attacks, not quite as bad as your friend, but none the less a real change in my normal personality. I assumed it was a Rebif side-effect. Like your friend, it seemed to be worse after an injection. After encouragement from my girlfriend, I talked with my doctor about it. She told me that the anxiety was a symptom of the MS, not a side effect of the Rebif, and wrote me a 'script for Celexa. It is one of the selective seritonin re-uptake inhibitors. It was developed to treat depression but is often perscribed for anxiety. It also has a slight seditive effect that helps me sleep (something else I was having problems with). Since I started on the celexa, my anxiety attacks have all but disappeared and I sleep much better.

My point here is do not make the same mistake I did and assume the anxiety is a side effect of Rebif. Get your friend to talk to his doctor about his anxiety attacks. There are meds that can help. Celexa has made a huge difference in me. Personally I think that is a much better option than stopping your diease modifiy meds.

I hope this helps you and your friend.

Good Luck,

RRMS since 01/07.
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Postby msmommie » Thu Feb 14, 2008 3:30 am

Actually, he has spoken to his neuro, who agreed to stopping the rebif at least temporarily and seeing what happens, as an experiment to determine whether that was the cause or whether the same anxiety symptoms kept on. So while I initially acted on a hunch, I don't think associating rebif and anxiety is merely and assumption any more, given the results of experimenting with going off it.

I should also clarify that I'm writing from Germany, and doctors here have a different attitude toward medications than in the States... here it is very rare for a doctor to give you another med on top of what you're already taking to deal with the side effects of the first one. They tend to be reserved about giving one person too many meds at once.

I know others have experienced anxiety from MS which then got better on rebif, so I am not by any means saying rebif causes personality changes and anxiety, period. In this case however, I really do think it is the rebif since it happened in direct conjunction with bumping up the dose and since the person concerned had non-diagnosed MS for quite a while before getting on rebif and never really stressed out about anything. Except bad punctuation, believe it or not.

So still looking for others with the same experience and also with the question, where do we go from here?
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Postby rasnet6 » Thu Feb 14, 2008 4:33 am

I was on avonex and felt unwell as a result. I didnt get uptight or stressed, i just slipped away into a world where nothing bothered me. People talked to me and I just couldnt be bothered, it was just noise. I managed to work, but when I came home I had no energy for anything and would sit on the sofa and stare into space.

It took about a year for these effects to build up. I didnt notice them until I had wasted a year on the sofa. So i stamped my feet when I went to the neurologist and insisted they take me off the avonex... within a month I was back to my normal self.

I then tried copaxone with no ill effects whatsoever.

If anyone ever feels there is a problem stamp your feet and make people listen to you as the solution may be as simple as switching drugs.

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Postby itsjustme » Thu Feb 14, 2008 7:47 am

"Interferons (Avonex/Rebif) do not cause depression nor induce anxiety".

If I remember correctly, this is what the drug manufactures told neurologists about ten years ago. Today the opposite is being said.
Yes, they do make you depressed.

Here's my experience:
I initially got that same frustratingly, all-knowing attitude from a non-MS neurologist. I had switched from Avonex, having been on it for three years, to Rebif for about six months. Finally, I ended up calling the neurologist's office and told them I couldn't handle the side effects anymore and couldn't stand one more day of misery. When I went to see this (arrogant) doctor he asked me which side effects were causing me to quit. I told him I was experiencing dizziness and depression. He tried to correct me by telling me these two things are also symptoms. I countered his statement with how they showed up the morning after I got a shot and disappeared the next day. This happened every single time. So "we" decided to go back to Avonex. Not surprisingly, the depression and dizziness improved significantly.

My lesson from this is:
a) not all drugs work for everyone and
b) you also need a doctor who will listen and work with you.
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Postby msmommie » Thu Feb 14, 2008 9:01 am

It's good to hear that other meds. can work without side effects in case those become necessary again.

What was a little disturbing in this case was that the information about mental health side effects is NOT included in the German patient-information leaflet, and that the neuro did not mention anything like that as something to keep an eye on as a possible side effect.

I really feel that before people go through a year of being spaced out or a whole winter of driving everyone around them nuts they should be adequately informed about where that may be coming from and how to deal with it. From this forum it seems like you really have to inform yourself and be very pro-active. This is going to be a transition for my friend since he had hoped to cope with the diagnosis (June 07) by taking his shots and otherwise ignoring it, not thinking about it, not reading about it, and so on. That is obviously no longer going to be an option.

Here are my ideas for a few first steps. Please let me know what you think. He's already on Omega 3 and Gingko and gets cranial whatsit therapy regularly.

General detox:

stop smoking,
find out about amalgam fillings and have replaced if necessary,
start detox supplements (cribbed from the kitchen sink thread).

get bloodwork done to find out what deficiencies need to be replaced to decrease likelihood of further episodes.

get sport-therapy to maximize coordination, balance etc. (you can get that on prescription here, for free) and/or start yoga.
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Postby msmommie » Sat Mar 15, 2008 1:07 pm

I'm afraid I need to post this for anyone reading the rest of this thread and hoping their anxiety issues will go away if they go off rebif.

I wish it weren't so, but about four weeks after going off rebif, my friend had another anxiety episode. This means we are facing the possibilities a) that the anxiety is coming from the MS directly or b) that it is home-grown anxiety resulting from the stress of the diagnosis (nine months ago), a big loss through break-up, and other pressures and life questions.

Can anyone let me know how you deal with MS related anxiety, whether from the illness or as an emotional reaction to its challenges? The person concerned is going to go to a first counselling session next week and hopefully be able to get more clarity about where this is coming from and how to cope with it.

We still think the rebif made things worse emotionally, but at this point it is abundantly clear that there are other things behind the anxiety as well.

Does anyone know of any conclusive findings about whether it's even possible for lesions to cause anxiety? Anxiety when you have an incurable and totally unpredictable disease is perfectly sane, really, but the thought that your anxiety is a result of your brain sort of mechanically not working right is a lot more distressing. And why am I even asking for conclusive findings about anything related to MS? Who invented that name, anyway, why don't they just call it Total Absence of Clarity?

And my final question: can some one send me a virtual tub of double chocolate mocha nut ice cream and some bailey's? Because I am getting a little weird myself. My place has never been so clean, lemme tell ya.
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Postby carolsue » Sun Mar 16, 2008 10:09 am

no experience with the anxiety, sorry. maybe yoga, or breathing exercises? hang in there. I'm sure your friend appreciates the support you're giving.
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Postby Punchy » Mon Mar 17, 2008 9:40 am

msmommie, keep in mind that the drug can take a while to get out of the system completely.
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Postby AllyB » Fri Mar 21, 2008 1:48 pm

Hi there

I picked this thread up accidentally - I am on Avonex, but it is essentially the same drug as Rebif, just a different mode of delivery (IM inject rather than SC inject).
I can only offer my own experience and that is to say that I think that there is a link between MS and anxiety. My Neuro says that it is chemical, and caused by the 'cascading' of the immune system and it's consequent impact on the CNS. My Neuro-Psych (who is a Professor) also says that sub-cortical white matter lesions have an inpact not only on how the brain functions, but on how emotions are experienced too.
There are warnings on my Avonex packaging regarding depression!
So, the problem is three-fold:
- ms can contribute to anxiety and depression, chemically
- being diagnosed with a crappy disease like ms can make anyone anxious and depressed
- interferons can contribute to emotional issues like depression.

Prior to being diagnosed with ms, I thought that there was something wrong with my heart - tight band around my chest, 'palpatations', and anxiety - no doc really tested my heart (I was only in my early thirties, so no-one took it seriously), they just thought I was a fruitcake, and offered me counselling! I think Bob's (Lyon) wife also had some kind of scare with heart issues prior to diagnosis of ms - he can tell you more about that.

So I am now on Cipralex for depression (!), take an occasional Lexotan for muscle spasms and anxiety, have a programme going with my Neuro-Psych, and am learning to live with it. I believe in a multi-disciplinary approach - meds (if indicated), counselling, support from your medical team, family and friends, and lots of enjoyment in life - learn to ignore stress and avoid negative people, do things that make you happy, introspection is good in context, but too much dwelling on what might happen can drive you crazy and it is a slippery slope into self-pity (understandable but not productive) - and getting in touch with others who really do know what it is like to have ms (through a support group, or a site like this)...This gives you information and helps you stop thinking that no-one understands and taking all that anger out on important people in your life.

I have rambled on a bit - sorry for that (I tend to do it ALL the time), but I truly hope that your friend comes to grips with this - he is fortunate to have someone who cares for his well-being as you do.

Take care
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Postby missvicki » Thu Apr 10, 2008 10:41 pm

Can anyone let me know how you deal with MS related anxiety, whether from the illness or as an emotional reaction to its challenges? The person concerned is going to go to a first counselling session next week and hopefully be able to get more clarity about where this is coming from and how to cope with it.

Prayer, meditation, yoga, exercise, counseling, funny movie, pet therapy, vacation, sleep, glass of wine, Xanax...
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Postby Loriyas » Fri Apr 11, 2008 8:48 am

Staying busy, staying informed about MS, clonazepam
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