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Side effects to Lofepramine/Lomont

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Posted 3/15/2009 2:19 PM (GMT 0)
Anyone ever had Lofepramine (AKA Gamanil; Feprapax; Lomont) and had any side effects to it, such as worsening depression, extra nausea, feeling as if your heart is about to burst out of your chest at the slight bit of exertion or having a bath? Loss of memory and big loss of concentration.

Im still trying to find an answer to my most recent symptoms, and I feel like I'm getting worse each day.

I've been on Lofepramine for over about a month and a half now. My Cystic Fibrosis team, who are the main team involved in my care, have told me to stop blaiming the new med, as I had symptoms of nausea before starting the Lofepramine and have done for years. Only now it's getting worse since starting the Lofepramine. Without anti sickness tablets I can't eat even a quater of a meal, and can only manage now half of one of my high cal shakes, and that's throughout the day-not all at once. With the antisick tablets I'm eating a lot more-but any little bit of extra stress is having my stomach churning and unable to eat anything. The only think that worked as a full on proper antisickness that means I can eat anything, is alcohol mixed with redbull. But obviously that's not a very good solution with my liver cirrohsis.

I'm sure it's the Lofepramine, and I'm kind of worried if it is-especially with the heart thing, that's just scarey and I noticed it before I even read the leaflet to the Lofepramine. I purposely held off reading the leaflet for nearly 2 weeks, because that way any new thing would be a new thing and not just my head over reacting at being on a new tablet. So the heart thing is definately there, not a mental over reaction.

For the first couple of weeks on it aswell, I couldn't cry. I could feel it all building up inside like I needed too cry, but nothing would come out. A hospital appointment cleared that up-just by talking to my doctor. They're good at making me cry. But nobody had an explanation for me.

I don't see my psychiatrist until 1st April, I've not heard from her like she promised. She said she'd keep in touch with me starting on a new med and having removed my Mirtazapine, which wasn't working as well as it had been, but was keeping me more stable than I am now. I've tried to get my appointment moved forward. I can't go on feeling this depressed, it's not healthy for me, and it's definately not healthy to Paul who is getting stressed out at my new attitude to everything.

I feel like switching back to my Mirtazapine, as it usually kicks in quite quickly for me. But, I know I can't do that without guidance-so I'm a bit stuck. It would just be better to have the little bit of stability, than what I have now which is nothing.

I know, my only real option is to wait it out. But in the meantime I'm still scared stiff. I have a bad history with allergies and side effects. I give in trying to call my psych to explain this to her, as it gets me nowhere except her secretary saying 'she'll call you back later' and later never comes.

I've told my new counceslor, but he knows nothing about meds. I've told my CF nurse, but she's on holiday so can't really do much from Brunei, except email me back and telling me I'll be ok.

Am I being silly just blaming the new med? It doesn't feel like it to me. This doesn't feel normal, and all this has multiplied since starting the Lofepramine and stopping the Mirtazapine.

Posted 3/15/2009 3:48 PM (GMT 0)

Ah Gems,

The dang meds are a pain are they not?

Lofepramine is used for treating Depression. Lofepramine works by preventing this re-absorption of noradrenaline and serotonin back into the nerve cells. Therefore, it helps prolong the mood-lightening effect of any released noradrenaline and serotonin. This helps relieve depression. It is a trycyclic med so it is not one of the new generations.

According to the literature nausea is a common side effect. This may improve after a few days of treatment. Obviously it has not so I am with you, if you feel worse on the medicine and you have been on it this long I would speak up and ask to go back to your previous med.

I know it is so easy for others to tell you to just "stop blaming the new med" but as they are not the one taking it and having the nasty side effects remind them that you do have patient's rights.

I have the same issues with meds.  A therapist does not deal in meds and my psychiatrist does not deal in therapy, my PCP only deals in bodily issues and not psych so no one understand when I try to explain how I feel............

I should have been a Doctor.  LOL.

Hugs to you my sweet Gems and remember we are all here and we care.  Keep talking to us.

Luvs ya sweetie,

Kitt

Posted 3/15/2009 4:02 PM (GMT 0)
Hi Gems,

I think that we know our own bodies better than anybody. So if this doesn't feel right to you, I would keep trying to contact the pdoc. It can be so frustrating when something isn't working or is causeing so many side effects. Plus not being able to get ahold of your pdoc has to be so frustrating.

Keep us posted on how this is going.

Hugs my dear friend, Karen
Posted 3/16/2009 3:11 PM (GMT 0)
I phoned my psychs secretary again. I got to college and I just couldn't stop crying. I had to run off to the toilets, I was just pouring. I feel so sad today, even more than all week. It's like my heart is shattering over and over. I told the secretary this, and that I think it's the Lofepramine, and I need my psych to know right now. So she said she'd speak to her and get back to me, so she did-saying that they're gonna try and sort me out another outpatients appointment, then get back to me again. So far she hasn't. College was awful, soon as I tried to stop listening to music my brain kicked back in, so I've had it blaring all lesson. I can get away with it today, but not tomorrow.

I also phoned my CF unit about sickness, as after 2 days without antisickness tablets I'm back to really struggling to eat again. I need my GP to give me some, but they won't give them without a letter from the hospital.
The doctor I have just spoke to, spoke to me properly. He's a nice doctor who I've been determined I don't want to actually get to know, as he's leaving again in 5 months. But, he's just said he thinks it's the Lofepramine to, and to ignore everyone who's telling me to stop blaming the new tablet, as this time it makes sense. He also just talked me down from crying some more, and was very patient with me. He asked me if I needed an earlier appointment with them too-I said they can if they want, but there probably isn't much point. There's only 15 days until my next appointment, and it's going to be pointless seeing them before I see my psych if it is the Lofepramine causing problems.

I'm just waiting on 2 more phone calls now, from my GP and Psych. In the meantime I'm gonna try sleep, as I didn't sleep a wink all night. Maybe this will stop me crying even temporarely.

Kitt-my counselor is just a counselor. My psych however is a consultant, specialises in cognitive behavoural therapy and also eating disorders. She has background knowledge on CF and CF medications. You'd think I'd be an easy patient for her, but nope-I'm just too confusing for everyone I think. She's miles away from me though, as we have no psychiatrists in our town, only psychologist nurses and counselors. It's too hard to get to see her though, as she's just gone part-time with the same amount of patients. I'd agree to go to someone else if I could. But noone has CF knowledge like her, and I have been with her for about 4-5 years now. So she has a kind of better understanding about my muscle problem too.

You'd think though, even though she is busy-she'd still stick to her promises, especially as a psychiatrist, it should be known how important that is:(.

Posted 3/24/2009 3:05 PM (GMT 0)
My psych moved my appointment forward a whole 2 days. Impressive huh?

Anyway, due to all the side effects I'm still having, I got in touch with my CF nurse, she's back off holiday now. She thinks the pounding heart that keeps jumping and skipping thing is most likely Lofepramine and that it's not dangerous for me, just very uncomfortable.
She also agrees about the sickness. Not to sure about the memory and more depressed thing-she thinks maybe I could have got to this stage anyway being on no meds. Maybe it's just the Lofepramine is doing nothing rather than actually making me worse.

Due to my psych completely ignoring when I rang and asked for help because I was feeling worse, and because of some of the things I admitted of how I'm feeling to my nurse, my nurse has rang my psych. Told her everything, so she can at least think to prepare a solution for next weeks appointment. My nurse might walk over to my appointment with me, not asked her yet, but it's a busy clinic day so I may be out of luck, meaning I'll have to face this alone. But I do have a CF clinic appointment straight away after, so if nothing is sorted and I'm not happy, I might be able to get my nurse to help me out again.

In the meantime I'm still allowed to email my nurse with anything, which is handy because my head is totally overloaded, and I need to be completely honest with someone without fear of breaking any rules and boundaries, and with knowledge that if it gets too bad someone will be there to know everything should I go completely blank again.

I'm still sure psychs and antidpressants are meant to make you feel better not worse? I'm just lucky I got my nurse I guess to help me fight my corner, as I'm not doing too good on my own.

What other types of antid's are there? I've tried a tricylic (Lofepramine), a tetracyclic (Remeron) and a SSRI (Sertraline).
The only one that's been anywhere near helpful was Remeron.
Do you think a new tetracyclic would maybe give me the same help that Remeron used too, or now that Remeron doesn't work anymore do you think that another tetracyclic wouldn't either.

I just want some info so I know what my psych is talking about if she mentions different meds to me.
If one tricyclic or SSRI hasn't worked, does that mean others won't either?

I want to make this next appointment worth something, or my trust levels are gonna shoot even lower.
Posted 3/24/2009 3:37 PM (GMT 0)

Good Morning Gems, My Sweet Lady,

I am so glad you come here and let it all out, that is a good thing.

Your question: "If one tricyclic or SSRI hasn't worked, does that mean others won't either?"

No that does not mean another won't  work for you.  I did the best on Nortriptyline. Nortriptyline is a tricyclic antidepressant and is used to treat symptoms of depression. It worked well for me for over 20 years..........then it just quit. I have not found another med that has worked as well but then it maybe that I have changed over the years and my depression is harder to keep under control.

There are many to try but the tough part is the 4-6 week wait and going through the side effects while getting onto the meds that I always have trouble with.

Remeron I was told was the strongest by my Pdoc and she would save it in my arsenal as a last choice..........however she has also accused me of being very  insistent about what I will and will not try........I am just trying to advocate for me. smhair

Wow a whole 2 days huh?  I am impressed............LOL my sweet Gems.

Hugs to you

Kitt

Posted 3/25/2009 2:09 PM (GMT 0)
I agree the 4-6 weeks wait to see if this is the right medication is tough. The anxiety that comes with it, that this is another 4-6 weeks of hell to put up with with a med that might not even work is immense.

I wish that meds didn't have to stop working, that once you'd found the right thing, that would be enough to get you through. But things can never be that easy can they?

Thankyou for the information about the different meds, at least I know I'm not completely stranded now, I was having a major panic that this was going to be the case.
There was a bit desicion to put me on the Lofepramine to begin with due to my allergies to everything. It's going to take a lot of thinking this time like last time, to find something that works and doesn't make me feel worse.

I know I'm just gonna have to ride this out and see what happens as it's the only thing I can do. I just can't stop myself feeling so stressed out about it. I think I'm too used to doctors ignoring my voice completely and just doing what they want-then getting it wrong. I don't agree with docs telling me I should just forget all their past mistakes either. My trust is built on how many times they screw up and how many times they don't. Not just on how many times they haven't screwed up.

Lofepramine will be going out the window though-I give in with it-it works too stupidly with my body. I've already made my decision, now I'm just waiting for it to be challenged again.
Posted 3/25/2009 2:29 PM (GMT 0)

Dear Gems,

I cannot remember how many of these meds I have tried and one caused a severe rash that landed me in the ER, another caused severe Panic and Anxiety and also landed me in the ER and admitted because I took the first dose and took a nap.........woke up in severe panic.

The Doctor had changed me from one med to another and did the same mg dose as I had been on which was a huge difference.............so I was overdosed immensely on the first and last time I ever took this med.  He apologized and I should just trust now.  No way, I want to know what I am taking and the doses etc. and side effects.

Kick the Lofepramine to the curb and believe that there is one out there that will help you.

I wish you peace my superwoman.

Kitt

Posted 3/27/2009 10:33 AM (GMT 0)
I've just spoke to my nice CF registrar doc type dude. He's a nice doc but I still don't wanna get to know him, as we have hime for a whole 4 more months, then we get another new doc.
He says on Monday we will negotiate on meds. This including my Lofepramine, painkillers and also Diazapam. Someone open to negotiation though-that feels relieving.

My psych has this big thing that I'll overdose on the Diazepam, so won't let me have it. I've requested it for maybe just once a week, so once a week I get a full nights sleep, with no nasty thoughts, no nightmares, no crying. Even if it's not every week, I won't use it more often than that. I only want the lowest dose to take.

I've not slept in 3 days again, I can't keep living like this. If it was only the odd ocasional sleepless night it would be fine, but this is happening too often and in too many days in a row, until I finally just collapse in a heap through sheer exhaustion. This has got worse since starting the Lofepramine too. But I'm having all 3 tablets at night like I was told to. I'm looking around online, and it says the dose is normally split into a morning and night time dose.

I feel so pathetic right now-because I can't do anything. The 10 minute walk to my councelor yesterday nearly floored me completely. My heart was going mental, I was achey, I felt sick. It seems so pointless even trying to leave the house right now because it's such a huge effort. When I did get to my counselor he was shocked at how white I was, apparently I looked like a ghost-which is kinda understandable as I didn't feel very alive. It was our 3rd session, and this time I could hardley talk, or think.

I'm sorry, I know I should just be able to chill out about all this, it shouldn't be this big of a deal. I just can't work out where I've gone, my energy has vanished.

I know it's only 3 days now until my appointment with my psych and my cf team. I'm counting down the days because I want it to be over with, I want them to know the answer. But then I'm so nervous and don't want to go, as I know that like usual they will have nothing for me except more stress.
Posted 3/27/2009 3:35 PM (GMT 0)
Hi Gems,

I can see where it would be hard to just 'chill out' right now. You need some sleep. I hope that your pdoc can help you out. I know that you have been waiting a long time to see her. I hope that it goes well for you.

Best wishes to you Gems, I hope that you are having a good day.

Hugs, Karen
Posted 3/30/2009 4:24 PM (GMT 0)
Lofepramine is being stopped as from tonight. So dropping to 140mg tonight, then down to 70mg in a week. Next Tuesday my psych is going to ring again, to say what I'm starting on next. Didn't listen to what the maybe meds were, as then I can't get tempted to go side effect hunting.

Then after that, will apparently be seeing her in 4-6 weeks.

It's been the weirdest appointment ever, because my head didn't want to talk when I actually got in there to see her. Or even to any of the CF team. Handy that I got someone on email, or noone would have realised just how much was wrong.

Anyway, after 4 days of no sleep, I actually slept last night for 16 hours almost straight through. I was awake for an hour between after paul woke me to check I was ok and what time I needed to be up. Longest sleep ever, but then I did have 4 days to catch up on I guess........
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