Concerned about "depression" as a side effect

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Concerned about "depression" as a side effect

Postby flora68 » Wed Dec 01, 2004 6:24 am

I see that "depression" is listed as a side effect of Antegren. I'm wondering if they really mean "depression", or do they mean "suicide"?

I had to d/c Avonex last year because of overwhelming, bizarre, out-of-the-blue suicidal episodes that occurred exactly once a week (3 days after the shot). I wasn't even depressed; just went straight from happy to near-suicide, exactly once a week. Suicidal episodes started as soon as I got to the full dose, after tapering upwards for 3 months first. All of which was a humbling experience for someone who had great faith in her own mental health. But as valuable as that lesson was, I will never knowingly take that risk again, so, again, naturally I wonder whether "depression, in the context of describing Antegren's side effects, is a euphemism for "suicide".

After decades working in the medical field dealing with drug reps, I confess my cynicism-I totally expect drug companies and their reps to under-report risks and side effects that might negatively affect their sales. I also expect them to blatantly exagerrate efficacy, and to always, always lie about their competitor's products. That doesn't mean I don't try new things, but never, ever during the first year after FDA approval. If my MS weren't fairly stable, that would obviously be a much more difficult position.
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Re: Concerned about "depression" as a side effect

Postby HarryZ » Wed Dec 01, 2004 5:29 pm

I see that "depression" is listed as a side effect of Antegren. I'm wondering if they really mean "depression", or do they mean "suicide"?


I think it's far too early to tell just what kind of serious side effects one may suffer from Tysabari.(Antegren) Depression was listed but don't forget that everyone using Tysabri so far has been in the clinical trial atmosphere and that can have an effect on how the patient feels.

Everything that we have read about Tysabri so far has come from Biogen. Naturally they are going to emphasize the positive and minimize the negative....like you said, that's the mode of operation for drug companies.

Not until this drug starts to get used outside the clinical setting will be in a better position to see if it works as well as Biogen claims. And you can be sure that the other drug company competitors will be going over Tysabri with a fine toothed comb, trying to punch holes in it. I'm sure MS docs who are independent and not tied to any drug company will also peer review the drug and give their opinions.

Harry
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Depression on MS Drugs

Postby joshremus » Thu Dec 02, 2004 6:03 am

I take rebif currently, and know there have been plenty of people with Depression side-effects. Luckily, I don't think I've felt them. I mean, I can certainly get depressed about the cards life has dealt me, but I don't think the Rebif is contributing.

That being said, I would think whatever side-effects Tysabri would produce would have to be a lot different -- since it's a completely different drug, so maybe you wouldn't have the same reaction to the Tysabri as you had with the Avonex. Suppose the only way to know is to try.
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Postby bebe » Wed Dec 08, 2004 5:59 pm

interestingly enough, the incidence of depression in the Rebif pivotal trial was equivalent to placebo, so is it the drug or a symptom of the disease?? If you suffer from depression, you will probably have bouts regardless of the therapy.
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Interferon-induced Mental Meltdown a Unique Hell

Postby flora68 » Fri Dec 17, 2004 8:01 pm

Like some of you, I used to have my own interpretation of the situation when a patient would attribute severe depression or even suicidal ideation to "side effects" of medication. I just couldn't totally buy it; I was just positive that such a patient was vulnerable to such a "reaction" only if he or she already had significant emotional problems, perhaps deeply hidden, or at least a real deficiency of coping skills.

And I really didn't believe it could possibly happen to me. Not that badly. And if it did, I knew I'd be able to control it, psyche myself out of it. HA :!:

I don't think I've ever been so totally WRONG about anything in my life! :oops: But although my experience with interferon suddenly turned terrifying (and very nearly fatal!), it was still a valuable lesson in humility that I needed to learn. And I have a lot more empathy for people who do things that they say they really can't control.

Guys, believe me. That most extreme reaction to interferon, with overwhelming suicidal ideation completely out of the blue, is absolutely NOTHING like "depression", mild, clinical, neurotic, psychotic or otherwise. Trust me. It's a whole different animal altogether; nothing to do with sadness, situational context, or the "cards life deals".

This is hard to truly understand if you haven't lived through a drug-induced mental meltdown (or something just like it if there is such a thing). You and your mental health are fine and dandy until something completely external, this drug, blows you right out of the cockpit and totally takes over the controls for awhile. There is no fighting it any more than you can fight a tidal wave.

Try to picture the psychic equivalent of suddenly awakening from a pleasant dream to find yourself trapped on the top floor of a highrise that's ingulfed in flames, with no possible escape other than to jump out the window. By the time your hair is burning, your skin is blistering, and the heat is beyond unbearable, the fact that you are desperately trying to open the window to jump out doesn't really mean you're depressed, much less suicidal. You just can't stand the fire! It's different.

The bizarre fact is that some very functional, well-balanced, happy people do suddenly, actually kill themselves (or attempt to) as a drug reaction to interferon. It could happen to anybody. It's the only really dangerous possible side effect the manuacturer mentions, and it's as real as the copay.

Anyway, after what I went through, naturally I kinda hate to see anyone risk it, but luckily that kind of reaction is pretty rare. I'll just be so happy if Tysabri works out the way we hope it will, and maybe it can completely replace Interferon, and everybody can keep their marbles a little longer :? .
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Re: Interferon-induced Mental Meltdown a Unique Hell

Postby HarryZ » Fri Dec 17, 2004 8:43 pm

Flora,

Reading your description of what you went through kind of sent a shudder down my spine!! Hopefully I will never have to come even close to what you experienced.

I had the opportunity of speaking to my wife's neuro the other day and asked him about Tysabri. You likely read his comments on another thread in this section. But one very postive point he did make was that Tysabri didn't have anywhere near the "danger" that the CRABs had and that in itself would bring relief to many MS patients.

Harry
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Postby flora68 » Sat Dec 18, 2004 6:31 am

Thanks, Harry :) . I just saw my neuro last week too, and he said exactly the same thing.
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Side Effects Placebo / Tysabri

Postby better2gether » Wed Jan 05, 2005 11:37 am

Below is a listing with possible side effects of Tysabri, and the percentage of patients who experienced those effects, as well as the percentages of the placebo-group.

Side Effect Placebo / Tysabri

Headache 30% / 35%
Fatigue 18% / 24%
Depression 14% / 17%
Joint pain 11% / 15%
Allergies 3% / 7%
Urinary urgency 5% / 7%
Chest discomfort 2% / 4%
Local bleeding 1% / 3%
Chills 1% / 3%
Fainting 1% / 2%
Pneumonia 14% / 15%
Gastroenteritis 5% / 9%
Vaginitis 5% / 8%
Tonsillitis 3% / 5%
Skin rash 7% / 9%
Dermatitis 4% / 5%
Pruritus 2% / 4%
Amenorrhea 0% / 2%
Tremor 2% / 3%
Urinary tract infection 15% / 18%
Abdominal discomfort 9% / 10%
Abnormal liver function 3% / 5%
Irregular Menstruation/dysmenorrhea 2% / 7%
Serious systemic reactions (hypersensitivity) occurred in less than 1% of patients.


We should stop giving people placebos - look at the list of side effects!
And who knows what long term effects it may have? Has anyone done a long term study on its effects? That placebo could be dangerous stuff. :)
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Re: Side Effects Placebo / Tysabri

Postby HarryZ » Wed Jan 05, 2005 6:12 pm

Better,

You know, placebo is supposed to contain totally inert substances. I was told once that people running clinical trials don't have to disclose what the placebo contains.

Per your list, the side effects experienced by the placebo group appears to be far too high. You don't suppose something was added to the placebo to perhaps cause some of this.....no, can't be....I must not even think that way 8O

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Comment from a neurologist

Postby better2gether » Sat Jan 08, 2005 9:24 am

Comment from a neurologist

I'm often amazed at the thought process that some patients have. I follow many MS patients and some refuse to go on any therapy preferring herbal remedies. One even has a sister who has had multiple exacerbations on herbal therapy and LDN (don't get me started about low-dose naltrexone)and still wont go on therapy because she may have side effects. I guess she doesn't consider ending up in a wheelchair a side effect of no treatment!

Most of these patients are not stupid and one of my brightest patients (Engineer) refuses to go on meds. I note that some of these patients have an anti-establishment viewpoint on just about everything and that drives their mistrust of the healthcare system. I hope that as word gets out about low side effects on Tysabri that they will reconsider treatment. These patients won't come around easily but some will in the long run.
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Re: Comment from a neurologist

Postby HarryZ » Sat Jan 08, 2005 6:20 pm

Better,

I'm often amazed at the thought process that some patients have. I follow many MS patients and some refuse to go on any therapy preferring herbal remedies. One even has a sister who has had multiple exacerbations on herbal therapy and LDN (don't get me started about low-dose naltrexone)and still wont go on therapy because she may have side effects. I guess she doesn't consider ending up in a wheelchair a side effect of no treatment!


I'm not surprised that a neuro would make comments like that. Was told once by a family doc that the more specialized a doctor is, the less likely he/she is to know anything outside of their standard thinking box. Perhaps this neuro should meet the neuro at the University of Texas who was so impressed by his very sick MS patient's positive response to LDN that he has presented a trial proposal of LDN to the University's Medical Board.

I also wonder if the neuro above has any comments about the thousands of MS patients that have ended up in wheel-chairs despite taking the "approved" medications, some getting there faster than by taking nothing. I found it quite amusing on another MS Forum where the docs were commenting about changing from the CRABs to Tysabri. They were recommending this because the CRABs "had too many side effects, weren't all that effective and were too difficult to take". And these are the very same docs who insisted that their patients start a CRAB the minute they walked into their offices!!

How times can change so quickly!

Harry
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Postby PhireX » Thu Jan 27, 2005 2:30 am

Wow it's huge the % of side effects on the placebo. What the hell do they put in there? Or do we assume it's "All in the patients head" ?

Has anyone actually experienced the "Depression". I certainly got that on Rebif. I felt like I couldnt be inside my own head anymore, something didnt feel right, I was going crazy, lost my job, almost lost my girlfriend, and now im taking a long, long break and just researching about my condition. It's nice and relaxing. Plus about a week after not taking Rebif, I felt myself again. Now I can actually stay up all day, dont need to take Xanax, and can partake in house work. Yay.

If anyone has, I'd like to hear about it and how it compares/ compared to the Interferon factor. Is it depression as in lifelessness, that I can handle (just being blank for a while, not feeling like doing much, etc) or suicidal thoughts?

From what I see, depression only effects 3% of people. I always minus the placebo from the active, to get a more realistic number. I find it's easy to make things up when you expect a certain side effect. It's concerning though the number of side effects.

Like Flora68, I recieved nice side effects from Rebif two days after my shot, or shot day. The "Day off" day was okay but it got gradually worse throughout the week, and eventually, the day off wasnt a day off anymore. I D/c after 1 1/2 months. I only made it upto 1/2 a dose.

Anyway.. good to see it's working well!
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Re: Comment from a neurologist

Postby ursula » Wed Mar 25, 2009 5:55 am

HarryZ wrote: I found it quite amusing on another MS Forum where the docs were commenting about changing from the CRABs to Tysabri. They were recommending this because the CRABs "had too many side effects, weren't all that effective and were too difficult to take". And these are the very same docs who insisted that their patients start a CRAB the minute they walked into their offices!!

Harry


It´always interesting what the docs say when they are among themselves..

By the way I don´t think that many of the side effect reports from a study are very reliable.
The doctors there have to decide if the patient is in a bad mood (no adverse effect) or is depressive (adverse effect). Or is he even suicidal (severe adverse effect).

They also still try to make us believe that interferons can´t induce depressions.
But we know better, don´t we?
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question from nurse on depression

Postby 10yearsandstillkicken » Wed Mar 25, 2009 11:46 am

During my last infusion, one of the nurses asked if I had ever been depressed while on interferons (betaseron 7 years and rebif 2 years ). They use some type of interferon in cancer treatment and they keep a close eye on those patients. Not sure what the difference between interferons, if any, is but is was a major concern for the staff.
Chuck
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Postby Loobie » Wed Mar 25, 2009 12:41 pm

That's the reason I went off of Avonex. Tysabri gives me no side effects as of yet. Avonex depression was like throwing a switch with me. On it, depressed, off of it, not depressed. I think there's a reason that's the first thing listed in that paper that has the smallest print known to mankind on it that you get in every box, flier, magazine ad and everything 8O
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