Tysabri and suicidal thoughts.

[RMF]

Hi folks,

I was diagnosed with MS approximately 5 or 6 years ago. I was immediately put on Avonex which I took for a duration of 4 to 5 months. During that time I seemed to self destruct emotionally and experienced very dark thoughts and suicidal ideas. I believe that this was a side effect of the medication. I also experienced a number of other side effects and in the end I decided to quit Avonex and try something else which I did. I moved to copaxone and thankfully I recovered mentally, but unfortunately I couldn't handle the awfull site reactions and gave that up also. I have been medication free for 4 years or so.

I had never thought of suicide before Avonex and I have never considered it since then.

Well here I am years later, now considering taking Tysabri and to my horror I see that this same side effect is not only listed as a possible effect of the drug but also one of the most common. The thought of going back to that dark place terrifies me and I just wanted to see if I could get an idea from the Tysabri users here of just how common this side effect is and if there is any way to combat it.

Any input would be greatly appreciated.

[Scooter24]

As the saying goes been there done that and got the tee shirt, I might not have gotten as far down as you did on the avonex but never had to take anti D before or after the avonex,my dr put my on amitriptlene for AD, same problems with the copax, Have just had 4th infusion of TY and so far so good. I also started Ampyra 2 weeks after TY. I personally think that part of my problem was having to do the injections (read that as needle weenie) I love the TY infusions as it is only once a month andthe way my infusion ctr does it there is NO pain what so ever. the only side effect I have had is a slight headache for a day or 2 but not even enough of one to take anythng for it. Hope you have good luck if you decide to go with it.

[RMF]

I just wanted to add that I know that this is a very sensitive subject and that people may not want to discuss or even think about it so please accept my apologies if my post is upsetting to anyone.

[RMF]

As the saying goes been there done that and got the tee shirt, I might not have gotten as far down as you did on the avonex but never had to take anti D before or after the avonex,my dr put my on amitriptlene for AD, same problems with the copax, Have just had 4th infusion of TY and so far so good. I also started Ampyra 2 weeks after TY. I personally think that part of my problem was having to do the injections (read that as needle weenie) I love the TY infusions as it is only once a month and the way my infusion ctr does it there is NO pain what so ever. the only side effect I have had is a slight headache for a day or 2 but not even enough of one to take anything for it. Hope you have good luck if you decide to go with it.

Thanks for the reply Scooter. Just to point out though, I have never taken any kind of anti-depressant although it is certainly something that I would consider should I ever find myself in such a fragile emotional and mental state. I want to be around to see my kids grow up so I'd rather medicate than terminate.

[deege]

I also had the Avonex mental issues. I even had one spell of crying to the point of not being able to stop. I have been on Tysabri 2 years. I struggle constantly. When I feel I'm going down, I try to laugh and say I've got the double whammy (MS and Tysabri both have depression issues) and yet I am overcoming. (Or I tell myself I am)

I tried Zoloft (which worked before Tysabri) but I went into some kind of scary psychosis almost immediately. Stopped that and have been afraid to try any anti-depressants. Xanax works on occassion. I feel I have been beat down and am on the verge of stopping the Ty.

I don't want to discourage you from Tysabri because, as I always say, it does amazing for me with the MS. In 12 years it is the first time I have not had any active lesions on my MRI's. And everyone's response to the MS and any meds are completely individual.

Talk to your doc. Hopefully he/she will help you. Mine doesn't want to seem to deal with it, or anything related to Ty side affects.

[RMF]

Thanks for your input Deege, it is much appreciated.

I actually have an appointment with my neurologist tomorrow so I'll be discussing it then but I really have no idea of what to do.

I'm actually in pretty good health and in relative terms my MS symptoms are considered to be mild. Although it doesn't feel like that to me of course but I understand that I'm lucky in terms of how things could potentially get for me.

No one would know that I have MS or anything else for that matter if they passed me in the street. I don't have any visible signs at all, but what I do have is burning and buzzing in various parts of my body but mainly my legs. The muscles in my calfs feel like they are just about to cramp up at any given moment even though in actual fact they can be completely relaxed. I have blurry vision in my right eye currently and sometimes I slur. All in all it sucks but it's not bad in comparisson to some others out there. But I want to stop it in it's tracks.

I'm 34 years old with 2 very young children, and I want to be able to participate in their lives as they grow up. I've also just landed what I would consider to be my dream job which starts this coming Monday and I don't want this stupid illness to ruin it for me.

I'm terrified of PML of course, but that's something that I'll have to leave up to GOD if I decide to go ahead with it. I just can't bare the thought of going through the depression that I felt on Avonex again. It really was literally the worst time of my life.

I'm really confused. I just don't know what to do.

[LL60]

RMF - Welcome to these message boards.

I really wanted to reply to you. I have tried to bring up the depression side of MS a few times. But it seems no one has had quite the reaction I have had, or just didn't want to talk about it, so I sort of dropped it too.

I can only relate what I have gone though with Tysabri. It is one person's story. Only me. But it is just amazing my doctors. Freaking them out almost. It pretty much has "cured" my depression.

Depression was my very first symptom. With the exception of three tiny ones all my lessions are in the frontal lobe and affect my mood and speech and thoughts and memory. I have a great life, but went though terrible depression. They put me on Copaxone because they didn't want the side effects of the interferons. When I had a reaction to Copaxon after 5 years my psych doc said no way to the interfons even though my doctor said she would follow me closely. So it was chemo or Tysabri. I picked Tysabri knowing a side effect was depression, but not really knowing what else to do. After 3 months there was some change. I little. I could more help myslef. After the 4th infusion things got way better. I stopped seeing my psych doc. After the 6th infusion I stopped seeing my therapist.

My pcp said this summer was the very first time he had EVER seen me that I wasn't depressed. He has been my doctor for about 4 years now. My psych doc said I look like a totally different person. I have to see him once a year just because I am on sleeping meds. My neuro said my reaction to Tysabri was not common for her to see, but she is so happy for me.

I have a very stressful job and a lot going on in my life right now. I have to work at things a little, sometimes a lot, but it is not like it was for so many years. It is nothing like it was. I have been on 42 different psych drugs and in the hospital many times for suicide attempts. I am on no meds and see no one for the depression, although I do email my therapist when I need some suggestions on how to deal with certain things. At the moment work is really bad and some family things.

But it is just life and I accept that and am dealing. And all three of my doctors agree it has to be the Tysabri and they are amazed and all suggest I stay on it and I am very aware of the PML risk and watch every little thing.

Good luck and let us know how your app. goes tomorrow. My doctor said if you are one of the ones who get the depression from the interfons, that is a special dark deep depression and it would be worse for me that what I went though. But many don't get it. So, meds really are a very very personal thing.

But for me Tysabri is a life saver. I go for #17 tomorrow.

Please do let us know how things are.

[Scooter24]

RMF- I think you have a better idea what to look for so you can get meds for the depression as soon as it starts, I didn't really look at it that way and rather was blaming it on another illness at the time ( cancer) it was my Nuero that brought it up and suggested meds for the depression. As I said I haven't had any problems since being off Avonex, If you are wooried about PML I know my dr is asking people to have blood test to see if we have the antibody for it as a part of a study, that may give you some piece of mind on that subject, just remember even if it shows neg doesn't mean you can't get it or if it shows pos that you will. I have read somewhere that if you have ever been exposed to mono that you will most likley show pos from that. after working on ambulances for about 20 years god only knows what I have been exposed to. good luck on your decision

[amandarianne28]

This is my story, hope it helps.

I was diagnosed with Clinical Depression right after my MS Diagnosis, which was the day after I turned 23. I was put on Zoloft, then Citalopram, then Amitriptiline, then a mix of Xanex and Valium over the years as my moods went up and down. I was in weekly therepy for 3 years. I was put on Betaseron 2 years after my diagnosis and noted that I got worse immediately after but instead of taking me off the Beta the Dr's just adjusted the anti depressants I was on and found a dose/combination that worked to contol my mental state better. I persisted and eventually got off all anti depressants after 4 years and out of therepy after 5.

I had my 5th infusion of Tysabri yesterday and since I began I have felt physically better than I have in the 6 years since I was diagnosed. As for my mental state, I have noticed when I feel closer to my 'old' self I feel better mentally in general, and the Tysabri has bolstered that in me. If anything I feel more mentally stable than I have since pre MS.

Knowing you are at a higher risk than some for this side effect you are better able to guage when and how you handle anyapperance it. And getting a plan of action in place ahead of time is a great idea in your situation so if need be you can act quickly before your mental state deteriorates much, if at all.

Good luck with whatever you decide to do, keep us all posted

[OriginalC]

im taking tysabri and do have suicidal thoughts quite a bit. I hate the antidepressants because they just make my 's drive' worse than what it already is. My advice would be to go and talk to a physicist and try to get sum better medicine or something, thats what Im doing in a couple weeks.

[retiredfireguy]

depression

So having MS for 24 years or so let me tell some of my life with it.

Been on Beta since round two of the lotto for it. Just went off it in July this year. So roughly 17 years. Just stopped workin in July also.

Started going to some men with MS get-to-gethers. We found we all cry too much. So went and so my genaral about this. She said the weight of the MS would wear opn the mind. Found my brain was going none stop. Put me on Zoloft. latter put me on some thing to take in the morning to get going. Had a seizure last to had to stop the morning one.

So now I just start Tysabri last week. Noticed for the last month or more that I do cry way to much. See on of my Doctors this week so hoping he can help on that.

Far as bad thought, those seem to come up more than in the past. I can't give up on life or my family.

Was on a a med that caused real bad anger and stuff after a week. Don't rember what it was.

Sorry for all the jumping around.

tony

[shannon101375]

crying all the time

I have been on TY for 28 inf. jc- and all but I am super emotional HELP!!??

[cremmins]

RMF, I've never gotten to the point of suicidal thoughts but I've definitely had depression. I was diagnosed in 1999 and started Avonex right away. I didn't have any mental side effects from it but I ended up going on Paxil in 2003 for depression related to other issues. I stopped both the Avonex and Paxil in 2010. I started the Avonex up again two months ago and immediately sunk into depression and went back on Paxil. Now all is fine and stable.

Depression is a prevalent symptom with MS to begin with and the interferons make it worse. Paxil does wonders for me and I had no problem tapering off of it a few years back. ADs aren't for everyone but they may be worth looking into. Good luck!

[Tomjadg]

I am on Ty, and have thought about it, but not because of the meds in my case.
I just hate this type of life. I can't do anything any longer.

The only thing that keeps me from ending this is that I would never do that to my wife.
It is what it is. I have no control,and we just deal with it.

We had to put our wonderful dog down a few months ago, and my wife wants to get another.
I told her it wouldn't be a good idea. I'm so limited to how much I can be on my feet, I wouldn't be able to take care of her when my wife isn't home.
That really sucks.

[kewi1976]

just stopped Avon

Yes my dr just pulled me from Avonex last week when I told him about all the suidical thoughts I was having. i was never like that and had only been on Anovex since Auguest 11. He is now offering Copax and may be Ty, but reading all the post has definately turned me away from Ty. I dont want anything that's gonna cause those types of feelings again. For some reason i can control life issues/depression, but on the Anovex it seemed so heavy and uncontrolable. So a "no" for me on any further offers of Ty. just MHO