getting started on Rebif- depression as side effect

[rothexl]

Hi, I'm still new to this forum, have been dx in Feb 2010 with RRMS. Sorry this is going to be long, hope someone knows anything about this kind of stuff!

I have first been started on Avonex by my neuro- after 1 shot with half the dose I became severely depressed after about 2 days, so my neuro told me to stop it immediately and go onto Rebif the week after. Six days after the Avonex shot, as if someone had flicked a switch, I was completely back to normal again.

My  neuro didn't tell me anything about with which dose to start, I got the advice to gradually increase the dose from the nurse I knew from when I tried Avonex.
So I started Rebif with 1/4 dose for the first week and then increased 1/4 each week until the full dose. It went well for almost 3 weeks, then, on the weekend after 1 week of 3/4 dose I felt a bit flat, but not too badly, so I thought maybe I'm just down in general, then, into the week with full dose, I broke into tears at work and got severely depressed again.

When I finally reached my neuro, he told me to stop immediately and that it's OK to pause for up to a week. He told me to see my psychiatrist (as I am on an antidepressant) for advice. I got an appointment to see the psychiatrist in one week. My neurologist's appointment is another week after that. That makes it two weeks. So what am I supposed to do in the second week?? Also, I have already talked to my psychiatrist about this issue and he has told me I can't increase my dose any further, so I don't expect to get any new information from him.

I deducted from my neuro's reaction that he apparently thinks it's worth trying to stay on Rebif, but as he simply didn't give me any advice, I've decided to take it into my own hands, not that I have a choice at the moment. So I cut back the dose to 1/2 dose again last Friday, as that seemed to be still OK in the past. Since then I haven't been depressed, so I've decided to keep going with 1/2 dose for the time being.

I have by now serious issues with work as I have to miss a lot of days (whenever I get depressed), I told this to my neuro on the phone- and he said absolutely nothing to that. I would have thought he could have at least offered to give me something written for work??

If anyone here has any experience with Rebif and depression as a side effect, I'd be really grateful for any advice or information.

Also, is it normal to be left alone with that as I have described- or am I just expecting too much?

Thanks a lot in advance,

all the best, Rike

[rothexl]

Probably kind of lucky your Rebif-welts came before depression..! Are you taking Copaxone now?
Sounds great that therapy and acupuncture keep you well. Unfortunately, I really have to be on an antidepressant continually (have been for many many years now)- I'm so glad it works for me.

I'll give Rebif a last try with the advice I got just now- but if I get depressed AGAIN I will have had more than enough and will definitely move on to Copaxone. Surely I can get used to the daily injection- and that's absolutely nothing compared to depression.

Thanks and take care

Rike

[Guitar_grrrl]

I took Rebif for 4+ months, and was afraid of the depression side effect.  It never got that far because I got hives from it instead.  Oh well.

I keep my depression in check with talk therapy and acupuncture.  I'm not on any antidepressants.

Good luck, and maybe try Copaxone.  Rebif will possibly make depression rear it's ugly head again.
Cheers,
Guitar_grrrl

[rothexl]

thank you too for your support, it helps so incredibly much.

-Been to see the psychiatrist as my neuro suggested- and he told me exactly what I could already have told my neuro one week ago on the phone: that I am on the maximum dose of my antidepressant and that there is nothing else he can do in that respect. He wrote a referral letter to another ms specialist for me and his receptionist even called there for me and made it urgent and faxed the referral- but still the first available appointment is on 13th of may- totally useless. but if i'm lucky, someone suddenly cancels, of course.

but i did actually reach another ms specialist I had an appointment with two weeks ago and who was really nice and gave me his personal contact. I just described my current situation to him and he pretty much immediately wrote back and gave me the advice to stay off Rebif for a week until the depression is gone again, then start on 11 mcg 2x per week for two weeks, then 11 mcg 3x per week for two weeks and finally go on 22 mcg 3x per week. He also thinks this is definitely a very efficient dose and as he has seen me personally he added that he thinks in my case (=lightweight) he doesn't even think a higher dose would have any additional benefit.

That was exactly what I needed, just some concrete good advice I can then follow. He sounds like he has a lot of experience with treating MS and I will try this now. If that also fails, which I don't hope, I will of course ask my neuro to prescribe me Copaxone instead.

I'll let you know how it goes- and thank you all so much for being there for me

Rike

[essdipity]

Injectionable??? Kept trying to figure out what's the right word, and that sure isn't it! Guess I meant injectable, but can't even spell today. Dim bulb brain.

Hope none of our injectables are objectable!

ess

[essdipity]

Your fear is so understandable, a very human reaction. No injectionable med is easy, but loads of people can and do get used to Copaxone. Lulu is one of our chief Copaxone supporters, and we have many others for whom it also has become just part of the daily routine.

Please try not to borrow trouble. It finds us on its own, yet it misses us even more. You can cross that bridge when and if....

I really don't think you should ever be on an interferon. It's just not in your best interests, and is one of those situations where the negatives truly outweigh the positives. Safe oral meds are in the pipeline, and we all are hoping for them, for us and for you.

Meanwhile you'll get so much support here. Please keep letting us know how things go.

ess

[rothexl]

Hi Quix,

your post again shows me that I REALLY need to find another neuro- working on that!

I'm just scared to start the Copaxone because then there is no other option left- and of course daily injections are something I'd really have to come to terms with. Scared that I could get bad injection site reactions and would have to stop -and then have the interferon-issue again. I absolutely want to take a DMD- do at least as much as I can.

Thanks for your input,
Rike

[Quixotic1]

Just a quicdk thought here.  If depression occurs on one Interferon it would be expected to occur on all Interferons at the same dose or higher.  Avonex is the lowest does and my reading on this problem says that the same side effect would be expected - and possibly worse - on a higher dose.  So, I don't understand the switch from Avonex to Rebif AT ALL.  In order of increasing Interferon dose it goes Avonex-> Rebif -> Betaseron.

When I developed unacceptable depression on Avonex my neuro, and Avonex researcher, stated unequivocably the ALL the Interferons were now "out".  the only ohter possibility is Copaxone.  Depression is not a side effect of Copaxone.

Quix

[rothexl]

Hi Lulu,

yes there are definitely MS specialists in Australia- but mine seems to be mainly specialised for epilepsy- but is also seeing MS patients.

I'm currently asking for a referral to a dedicated MS specialist by my boss' colleague who had already helped me back when I received the shock news of my abnormal research scans.

And, among all this cr.. something overwhelmingly positive: I think I did mention work trouble (with my two female colleagues, who decided it was the right time to NOW complain about my performance in one of the areas my position covers)-
Today my boss was finally back and simply showed me he still fully believes in my ability to do a good job- when I'm feeling normal- and told me to take the next 6 weeks off to sort the medication issue out and get well again. He wants to employ someone casually whilst I'm gone and I will be back to my job on 1st of May- and I know I can fully trust him. Then he even defended me in front of my colleagues (who were furious) and made it very clear that he does NOT question my ability nor does he want to get rid of me.

I'm totally overwhelmed of this amazing support- I am so incredibly lucky to have this person as my boss.

Thought I'd say something positive for a change :)

So now I'll do everything to get to see an MS specialist asap -and will also call the Rebif nurse now. So glad that at least I don't have to worry about work on top of all of this anymore now.

Thank you so much for your input and support, will keep you posted!

All the best to you, too,

Rike

[Lulu54]

Rike,
You should always expect the correct information.  Period.  No exceptions to that one.  
I'm unclear as to what the status of neuros in Australia  is - do you have doctors who specialize in MS or is it a mixed bag like your neuro is doing?  

You really do need someone who is current on the treatments of MS and understands the nuances of this MySterious disease.  

From what you describe you could also use someone who is knowledgable about MS patients and depression.  Depression is very common among us, and the reasons can be varied - physical, chemical or situational.  Don't delay in seeking treatment because it is hard to resolve on your own.  I speak from my own personal experiences.  

be well,
Lulu

[rothexl]

Thanks a lot for thinking this all over for me with your experience.

I agree that it's so important to have a neurologist who really cares, and that's why I like mine so much. What I really think is that he may be completely overworked- and also, I think his main emphasis is on epilepsy although he is also seeing MS-patients.

The thing is that he knew that I have a long history of recurring major depression- I'm definitely happy with him starting me on the interferons in spite of that- but knowing about the depression-issue --and therfore risk on an interferon-based DMD, he still only gave me my next appointment in 10 weeks' time.

And he didn't tell me that Rebif should be gradually increased, if I hadn't happened to talk to the Avonex nurse, I wouldn't even have known this was done as I thought I'd just do exactly what he told me. This makes me uncertain now if I can just confidently follow what he suggests I should do or whether he just tends to forget to mention important stuff or maybe hasn't got enough experience with MS patients (although I think he does, that's the weird thing).

I do have a paging number and usually he calls back within the next 1-2 days, but then he'll only have a maximum of  5 minutes- and I forget half of the things I would have wanted to ask him. And the 3 times I've done that by now I felt as if I was completely stressing him out and feel very uncomfortable calling him now.

I'll get a call by the Rebif nurse on Monday and like you suggested, I'll ask her my Rebif-related questions.

I just don't know what I as a patient with MS could or should expect regarding correct information and support. I hate to ask for stuff and try to carry on myself but at the moment my whole life seems to be breaking down, and I'm truly at a stage where I just have to admit that I do need help badly- not because of any severe MS-related symptoms but because of depression which I didn't have before I started on Rebif. Until then I was working full time although I had my second flare starting in early January (still ongoing), so that can't be the reason why.

Thank you so much for caring and taking time to think this over, I'll let you know what's happening.

Rike

[Lulu54]

Hi Rike,
Being on copaxone myself I can't comment on the Rebif  other than I have heard of others taking 1/2 doses and doing fine. Titrating this medicine is standard from what I know and this doctor should have discussed this.   Please talk this all over with your neurologist - the dosage you are on and the need to titrate.

As for dropping this neuro, I don't think I would be so quick at that.  We often assume that these doctors can not only understand how our brain works but also that they can read our thoughts.   If you said to the doctor you need a written note for work because of your absences, do you think he would ignore your request?  I tend to give him the benefit of the doubt here - he wasn't able to read between the lines of what you were saying to him.  

You describe this neuro as being accessible and that counts for a lot.  So many here have problems with getting much more than a brief amount of face time with their doctor.  

Can you take a bit of time and think through a list of items you need support with?  Then see which items can be done by someone other than your neuro, like the nurses, your psychiatrist and/or your GP, an MS support group, and even  this community here at MS.  When you have pared the list down to what you absolutely need from your neuro please discuss those items with him.  If he is as kind as you describe, I am sure he will work through this with you and help develop a plan.


Let us know how it goes ....
Lulu

[rothexl]

Thanks for replying so quickly! That's great to hear it's OK to be on just half the dose and still get a significant therapeutical benefit! I'm also quite tiny, so probably similar to what you described.

Glad to hear you are doing so well on half the dose!

You know, I'm a bit traumatized regarding changing neuros as I have been first referred to an absolute a-hole, I can't describe it any differently, and then in my desperation simply looked up all neurologists here in Melbourne via the internet. I was starting with a flare by then and was terrified by the symptoms- and my current neuro agreed to see me immediately and on the appointments with him he has spent ages to answer all my and my husband's questions (1,5 h at least). And he is really a nice person, so I feel somehow ungrateful to "discard" him, although I can also see that, although I'm sure he doesn't mean to, he isn't giving me the support I'd need righ now.

Can you understand what I mean? It's so silly, and I know I'm going to have to get over it, but I'm terrified to then get to someone even worse again (like my first neuro who performed a lumbar puncture on me, then had me walk under severe pain to fill out forms he had forgotten to have me sign beforehand and then told me he'd be on holidays for the next 5 weeks and didn't even bother to leave me a contact in case I'd have complications- and that just ONE example of his diverse "niceties")

Thanks a lot for your support, I will keep you updated- and all the best for you with everything, too!

[MsmsinFl]

Fire your neuro.  I CanNOT believe he did not give you titration instructions!  Did you have a Rebif nurse visit?  What did he/she say?

I've been on Rebif since 9/09, dx'd in July '09.

I have a history of depression plus thyroid issues and I'm very slender -- and at my own request, I'm taking the 1/2 dose (22mcg).  No problems of any kind.
Have no plans to increase the doseage unless I have a relapse or seriously bad MRI.

My doc and the Rebif nurse & rep all say that many people stay at 22mcg for various reasons & do fine.  If you read the fine print & graph on the Rebif package insert, you'll see that it's only slightly less effective at the half dose.  Plus if you're small, the smaller dose might be better (although the Mfr says the doseage is not weight-dependent)-- no studies have actually ben done based on weight, age, or gender in re to dosage.

You really need a neuro who at least gives you the info about the drug, doseage, etc, and the support you need while on Rebif.

Good luck to you -- let us know what happens with you.