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Dr. Bob is Robert Hsiung, MD,
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Posted by stargazer2 on June 2, 2007, at 21:18:29
In reply to Re: Nardil, new side effect; swollen ankles » stargazer2, posted by lymom3 on June 2, 2007, at 20:51:38
Lisa, Did you give up on all meds or what did you try next? Unfortunately,Emsam did not work anywhere as well as Nardil so I'm really bummed by this. I never had this SE before, so why now. I took Nardil 20 years ago and didn't have it. Probably Pfizer's messing with the formula. Why can't these drug companies leave well enough alone? Roche stopped making Marplan in 1994 and I was on it and was left high and dry to try every SSRI's over the next 10 years.
The big drug companies are always messing with things and disregard how they tamper with our lives. They don't see things like this of course, their only concern is will it sell and how much money will be made from it. Greed and profits should not determine what drugs are produced, but it does, so don't get too confortable on any meds since they might be discontinued without any warning. It happened to me twice with Nardil and Marplan, the only two drugs that really were effective for me.
It sucks to be depressed and dependent on meds that might work, work for an indefinate period of time, or never work. Life has been one runaround since 1987, the year I first tried a med for depression. Twenty years of uncertainty is no way to live, but what is the alternative, give up. I want to live but only wihtout depression. This has been a long, frustrating course and now with one side effect I feel another chance may be taken away from me, that is too much to go through again.
Stargazer
Posted by Phillipa on June 2, 2007, at 21:33:12
In reply to Re: Nardil, new side effect; swollen ankles/Philli, posted by stargazer2 on June 2, 2007, at 20:59:49
Stargazer when I was younger I had an OB-GYN who gave me B6 for PMS it reduced the bloat so maybe B6? Can't hurt water soluble b vitamin? Love Jan
Posted by lymom3 on June 2, 2007, at 22:04:03
In reply to Re: Nardil, new side effect; swollen ankles/Lymom3, posted by stargazer2 on June 2, 2007, at 21:18:29
After the Emsam they tried me on just mood stabilizers then some anti psychotics some anti seizure medications. Then the bottom fell out. I found out that my middle son is a drug addict. He went to rehab and I went nuts. I've never been suicidal ever before. I had been on Lexapro before and it had worked for me twice before. I have tried Paxil, Zoloft, Effexor XR, Wellbutrin, Cymbalta, Remeron, Tofranil, Pamelor and Serzone.
Those are the ones that fall into the anti depressant category. Won't even continue the list of the others. So it is so hard for me to think about mixing stuff up again. I just need so badly to feel peppy, perky, alive...whatever you want to call it. I would really like to care that my house is a mess or that I need to color my hair. Maybe that sounds silly. I go to work, get my work done, feed my kids, do my laundry...all the stuff that "should" get done.
It would be nice to want to go to dinner or a movie with my husband; take my kids to the zoo, plan a vacation and look forward to it. The stuff that normal people take for granted. I haven't given up trying to find the magic combination but it has eluded me for dozens of years so far...
Posted by gardenergirl on June 3, 2007, at 0:18:52
In reply to Re: Nardil, new side effect; swollen ankles/Philli, posted by stargazer2 on June 2, 2007, at 20:59:49
I've had swelling in my lower extremities with Nardil. It only occurs at 60 mg and higher doses. My GP prescribed Lasix, and I took that occasionally when the swelling was worst, though they never really reached the achy stage. Lasix was somewhat helpful.
For me, anytime I went to 60 mg or higher, I would get urinary retention and edema. It was annoying more than anything. I've been at 60 mg for quite some time now, and I only seem to swell now during my period or if I take an NSAID. I don't know if these side effects just eventually went away or if Lithium has anything to do with it since Lithium can increase urination. I haven't taken a Lasix in over a year. Actually, I don't know that I can anymore with Lithium.
I had the same worry as you about CHF. I'm overweight and out of shape, so I worry about health problems due to weight anyway. But I never had any other cardiac or respiratory symptoms accompany the swelling, so I think it's more of a kidney or urinary problem. But I'm only speculating. I've not had anyone explain the physiology of urinary retention with Nardil to me.
I hope you find some relief. Putting your legs up whenever you can and definitely a least once a day for 20-30 minutes or more is helpful. I would lie down with my butt up to the wall and my legs up against the wall to really really elevate them. Retrograde massage is also helpful (long strokes moving from the foot, up the leg towards the heart only, not back down). There are certain essential oils which are reported to increase circulation and "detox", and using a massage oil or lotion with them mixed in is another trick I've tried with some success. Epsom salt baths help. When you are sitting, doing ankle pumps is pretty easy (flexing the foot forward and back).
Hope this helps,
gg
Posted by stargazer2 on June 3, 2007, at 6:15:59
In reply to Re: Nardil, new side effect; swollen ankles/Philli » stargazer2, posted by Phillipa on June 2, 2007, at 21:33:12
Thanks Phillipa, I'll try the B vitamins.
Posted by stargazer2 on June 3, 2007, at 6:26:00
In reply to Re: Nardil, new side effect; swollen ankles/Lymom3 » stargazer2, posted by lymom3 on June 2, 2007, at 22:04:03
Lisa, I know what you mean by just wanting to do "normal" things like everyone else. I went out the other night with casual "friend" and I was so tired, she kept making comments about it. And this is someone that travels for work, has kids, lots of extra responsibilities and she says to me "you look flat", this my life on Nardil every afternoon. I was so pissed off for her to say that. Why can't super type-A achievers just understand some of us don't function in that high drive mode like them. She's someone I've told about my depression and wish I hadn't. Now I find she is always looking at me to determine what is going on with me. And I really felt judged and since she's not a good friend, I'm sorry I ever said anything to her in a moment of weakness. Being judged is a terrible thing especially with depression since you're never sure if your up or down and lots of times just "faking" it is the status quo. I want to have days where I forget i have this illness and just enjoy life.
I hope Nardil really is working, I can put up with the swollen ankles unless they get really bad and affect my walking or if I have pain. I'm going to look into vitamins and other natural approaches before more medication.
Thanks for your respponse. WE are allin this together, so it's a help.
Stargazer
Posted by stargazer2 on June 3, 2007, at 6:37:23
In reply to Re: Nardil, new side effect; swollen ankles/Philli » stargazer2, posted by gardenergirl on June 3, 2007, at 0:18:52
GG, are you taking Lithium and Nardil now? Why was Lithium added?
I'm on 45 mg so I got the ankle swelling before the 60 mg you had it at. I'm going to try some natural rememdies like vitamins and other suggestions I hear of. The ankle exercises I've been doing. Last night my abdomen also looked swollen and I hadn't weighed myself so I don't know how much, if any, weight I've gained since I started Nardil. I guess weighing oneself before starting any medication is the only way(weigh) to know it's affect on weight. No AD's have given me this side effect beforeandwhen I saw my ankles, or lack thereof, I said, Oh no, here we go again, so it was quite a surprise. I have no other medical issues that lead me to believe it's anything more than a water imbalence and I need to figure out how to reduce it in the most natural way, like vitamins, herbs or something to that effect. I'll let you know if I find anything to help me. I have to be careful with diuresis as I also have hypotension and with Nardil's reduction on BP, any additional reduction due to increased urination could be problematic.
Thanks for all your advice......Stargazer
Posted by gardenergirl on June 3, 2007, at 16:07:40
In reply to Re: Nardil, new side effect; swollen ankles/GG, posted by stargazer2 on June 3, 2007, at 6:37:23
My new pdoc added lithium to augment. Nardil just wasn't getting all the depression, but going higher than 67.5 mg was intolerable for me as it gave me severe insomnia and akathisia. It's been a godsend. I've finally hit the depression-free mark, though I've had a couple brief episodes that were manageable.
I think you're wise to go with natural remedies first. I was actually surprised my GP gave me Lasix, and I usually didn't take it more than a time or two a month. That prescription lasted forever, and I don't know that it was really worth it. And given your hypotension, you're right, it would be more risk than probably benefit.
So you're not getting urinary retention?
Take care,
gg
Posted by stargazer2 on June 3, 2007, at 17:52:49
In reply to Re: Nardil, new side effect; swollen ankles/GG » stargazer2, posted by gardenergirl on June 3, 2007, at 16:07:40
GG, No urinary retention as far as I can tell, just puffy ankles, which are not very attractive but I think I can live with that if I can manage it with some concervative measure which I'm looking into.
It's good to know that Lithium can be added to Nardil for augmentation if Nardil needs a boost. What is the dose of lithium and know Lithium can have effects on the kidneys so you have to be careful with watching the renal functions (BUN, creatinine). Has this been recommended for you at baseline or at intervals while you are on Li?
I knew several people who suffered kidney damage as a result of being on lithium, although I'm not sure what dose they were on.
Stargazer
Posted by gardenergirl on June 3, 2007, at 21:34:47
In reply to Re: Nardil, new side effect; swollen ankles/GG, posted by stargazer2 on June 3, 2007, at 17:52:49
I take an average of 450 mg lithium. I was prescribed 600 mg (2 300 mg capsules), but at that dose I would get this internal shaking sensation that was intolerable. It felt somewhat like low blood sugar shakes. I think it might be related in some way to dehydration or electrolyte problems. So now I take two capsules one night (600 mg) and one the next (300 mg) alternating. That is odd I know, but it seems to do it.
I don't know that I've had kidney labs done. I tend to get the basics every year, including liver function. I think maybe that BUN and creatin are included. I'm due again late summer, so I'll keep an eye on that. I also have had lithium levels drawn once. Since I'm on a pretty low dose, my pdoc doesn't think I need to have them all that often, probably every six months.
gg
Posted by Phillipa on June 3, 2007, at 21:52:00
In reply to Re: Nardil, new side effect; swollen ankles/GG » stargazer2, posted by gardenergirl on June 3, 2007, at 21:34:47
GG Bun and creatinine are included in the standard electrolyte test so I'm sure you getting them checked. Love Phillipa
Posted by gardenergirl on June 4, 2007, at 1:51:53
In reply to Re: Nardil, new side effect; swollen ankles/GG » gardenergirl, posted by Phillipa on June 3, 2007, at 21:52:00
Posted by Owsley on June 4, 2007, at 7:45:40
In reply to Nardil, new side effect; swollen ankles, posted by stargazer2 on June 2, 2007, at 16:48:05
Hi all, first post :)
I have been on and off Nardil and Parnate a number of times due to side-effects. I am presently on Parnate because, for me at the right dose, it is the best medication I have tried. Regarding your side-effects, I have had them too. The most irritating were the distention of the abdomen and the swelling of my ankles (especially the left).
I had two diagnoses for the swelling. One was Edema and the other Erythema Nodosum - an allergic reaction. I would always get the swelling from Parnate when I was just starting it. It would always go away within a few weeks unless I was on my feet most of the day (work) , then it would last a lot longer. What I did is got a doctor's note stating that my physical duties should be light due to a temporary physical condition. That helped a lot. Also, wearing a shoe that was large and loosely tied did seem to help - especially with the pain lol.This is my opinion, but I am convinced that the swelling is an allergic reaction to the MAOI. I had the swelling on both Nardil and Parnate and it both cases it went away eventually. Right now I am on 90mg of Parnate and feeling better than "blah". I hope this post helps you relax a little and you to be kind to your body by giving it a chance to adapt to the MAOI. MAOIs are one strange class of drugs :)
> Today I woke up with a new side effect of Nardil: swollen ankles. It is quite pronounced on both my external and internal malleolus (ankles). This was not present in the first few weeks of Nardil, so it is a later effect but obviously I'm concerned because it is quite obvious and I'm wondering if it is caused by a touch of CHF (congestive heart failure) Anyone else with this side effect and if so, what was done to relieve the swelling other than telling you to elevate your legs as much as possible. Was Lasix ever prescribed for this or another diuretic? Perhaps a natural diuretic since I tend to have low BP and a diuretic may cause my BP to drop further...
> My ankles were never thin to begin with, so now they really are prominent and they ache.
>
> Stargazer
Posted by stargazer2 on June 4, 2007, at 15:04:20
In reply to Re: Nardil, new side effect; swollen ankles » stargazer2, posted by Owsley on June 4, 2007, at 7:45:40
Owsley, Thanks for your input,the swelling seems a bit better the last 2 days and has shifted to the external ankles and not so much internal.
Obviously, its better in the morning after they have been elevated at night, so mornings, they are the least swollen. I also tried to take the majority of the dose later in the day to see the effect and that may have helped.I just paniced as initial swelling was quite prominent and came after no swelling or unmanageable sideeffects for about 3 weeks. I thought, here we go again. It's always something with living with depression.
Also, my mood initially seemed less depressed and now after a few weeks, the effect has lessened and the effect is harder to discern. I hope it is still working or I'll be very disappointed as the initial response seemed clearly effective. Perhaps another dose increase will be forthcomin. I'm currently on 45 mg and now sleeping better than a few weeks ago.
Mood is harder to guage and daily mood variations are normal anyway so you can't judge anything by a day or two. At least that is what I think.
I just hope the Nardil continues towork for me else I'm at a real loss as to what to do next. Its been exhaustng to continue this fightfor so many years. Life shouldn't be this difficult all the time...Stargazer
Posted by FredPotter on June 4, 2007, at 18:06:17
In reply to Re: I never had a GOAL of losing weight » FredPotter, posted by UgottaHaveHope on June 1, 2007, at 2:37:53
I must repeat that in my case I gained weight without changing my eating habits, so something metabolic is going on. I seem to suffer from dizziness and orthostatic hypotension, as separate things. I have to concentrate when I'm moving about as I sometimes stagger and people think I'm drunk (now why would they think that?) and there's the sleepiness in the day, although I sleep fairly well at night.
The other day I was playing in a band and closed my eyes to concentrate. This is jazz you understand and the idea is you bliss out, but I fell asleep for an instant and when I came to I had to remember what we were playing. Laugh!
Has anyone followed the recommendation to lower the dose when low MAO has been achieved? I can see this would work if MAOI was all it was but Nardil has a GABA effect, hence the anxiolytic effect. But perhaps I can gain that with Xanax
Fred
Posted by gardenergirl on June 4, 2007, at 18:44:41
In reply to Re: I never had a GOAL of losing weight » UgottaHaveHope, posted by FredPotter on June 4, 2007, at 18:06:17
> I have to concentrate when I'm moving about as I sometimes stagger and people think I'm drunk (now why would they think that?)
That passed rather quickly for me. But I know what you mean about how folks think you're drunk. It's disconcerting.
>
> The other day I was playing in a band and closed my eyes to concentrate. This is jazz you understand and the idea is you bliss out, but I fell asleep for an instant and when I came to I had to remember what we were playing. Laugh!I do that here at my desk. Not that I'm blissing out at my desk, but sometimes I just close them for a moment to get a break from visual stimuli and I find I've gone out like a light for a sec.
>
> Has anyone followed the recommendation to lower the dose when low MAO has been achieved?Whenever I lower beyond 60 mg I get depressed again. :(
gg
Posted by stargazer2 on June 5, 2007, at 20:31:05
In reply to Edema better today/owsley, posted by stargazer2 on June 4, 2007, at 15:04:20
I started Nardil on 5/15 and quickly felt better and knew this medication was doing something many others had failed to do. That effect lasted perhaps two weeks. The last few days I am feeling bored, purposeless and unmotivated which are some of my typical symptoms of depression.
Do you think I am due for a increase in dosage because of these symptoms? I'm due to see my pdoc next Friday after I see the research pdoc who I saw prior to starting Nardil. I was feeling so good initially I felt like my appt with him would be unnecessary and here I am having more symptoms again. I think I'll give my pdoc a call tomoroow to ask him if I should go up to 60 mg and see what this does.
I hope it will keep working since I am at a loss as to what to do anymore...Nardil was my last hope and I want it to work so badly.
What other meds can be added to Nardil to enhance purpose and motivation? GG, I know you tke Lithium, what effects did it enhance with Nardil?
Stargazer
Posted by Owsley on June 5, 2007, at 22:05:13
In reply to Edema better today/owsley, posted by stargazer2 on June 4, 2007, at 15:04:20
Hi Stargazer.
Interesting that you should write that the swelling has shifted outward. That is where I had all of the swelling when I first got it from Parnate. I still have a scar where they took a tissue sample approximately 2 inches above my outer ankle, left foot. Maybe it has something to do with the pressure of walking? I don't know...
My last experience with Nardil was about 7 months ago. The gastro-intestinal side-effects motivated me to ask my Pdoc to go on something else. With me, I was at 60mg. If I went above that, the side-effects became markedly worse. I was about 91 Kg in weight.
I have gotten an initial euphoric effect from MAOIs so maybe that is what you are experiencing? I would get a good amount of energy and then the response would flatten out. The medication would still work, just not at the same level. If I felt it was no good I would either increase my dose, stop to go on another medication, or augment the medication with something else. For example, right now I have to augment Parnate or else I get really tired in the middle of the day.
Take care!
> Owsley, Thanks for your input,the swelling seems a bit better the last 2 days and has shifted to the external ankles and not so much internal.
> Obviously, its better in the morning after they have been elevated at night, so mornings, they are the least swollen. I also tried to take the majority of the dose later in the day to see the effect and that may have helped.
>
> I just paniced as initial swelling was quite prominent and came after no swelling or unmanageable sideeffects for about 3 weeks. I thought, here we go again. It's always something with living with depression.
>
> Also, my mood initially seemed less depressed and now after a few weeks, the effect has lessened and the effect is harder to discern. I hope it is still working or I'll be very disappointed as the initial response seemed clearly effective. Perhaps another dose increase will be forthcomin. I'm currently on 45 mg and now sleeping better than a few weeks ago.
>
> Mood is harder to guage and daily mood variations are normal anyway so you can't judge anything by a day or two. At least that is what I think.
>
> I just hope the Nardil continues towork for me else I'm at a real loss as to what to do next. Its been exhaustng to continue this fightfor so many years. Life shouldn't be this difficult all the time...Stargazer
>
>
Posted by stargazer2 on June 7, 2007, at 6:26:02
In reply to Nardil effects waning at 45 mg, posted by stargazer2 on June 5, 2007, at 20:31:05
For those of you on 60 mg, how do you take the pills, 4 spread out over the day or 2 in the morning and 2 at night? Since they tend to make me groggy, I think taking 2 together is a better way to take them but I'm not sure if this is the prescribed way or if it even matters. Interested in finding out what others do at this dosage or above.
Stargazer
Posted by gardenergirl on June 7, 2007, at 14:26:59
In reply to Nardil effects waning at 45 mg, posted by stargazer2 on June 5, 2007, at 20:31:05
Lithium seemed to be the "missing ingredient" to get me all the way over the depression hump. It's hard to characterize exactly what it did. I guess it was more uplifting or mood enhancing, maybe? Before I was always hovering between sort of depressed and sort of not depressed, but I never really felt like myself or felt good. Once lithium kicked in, I felt happy, though not euphoric. But generally cheerful, goofy/silly, which is my normal personality, and less fatigued and sluggish.
Before that I'd added Lamictal, which helped some, though I wonder if it's doing enough to warrant continuing it now that I've started Lithium. And Provigil to combat the afternoon fatigue and to help regulate my sleep/wake cycle. My new pdoc doesn't seem to agree that I need Provigil, but he doesn't object enough to suggest DC'ing it. Every visit, though, he asks, "What are you taking that for again?" It helps a teensy bit with inattentive ADHD symptoms, too, but not as much as I'd like.
Oh, and I read below you're going to 60 mg. I used to take that in four spread out doses. I now take 2 in the a.m., one around 2 p.m., and the last one sometime between 8 and 10 p.m. I try not to take that last one too late, because I suspect it plays a role in the nighttime eating I often do, to my detriment. In the past, I took one in the a.m., two at 2:00, and one at night. I don't know that there's much difference, but that might have increased the afternoon sleepiness. Not sure. Occasionally if I get up really late, I take two when I get up and two in the evening. That doesn't seem to hurt anything, but it's hard to sort out because sleeping really late is not good for me in general.
Good luck! And as a reassurance, many of the side effects I get at 60 mg or higher have eventually gone away. Some took awhile, but they went away.
gg
Posted by FredPotter on June 7, 2007, at 15:36:36
In reply to Upping my dose to 60 mg...When to take?, posted by stargazer2 on June 7, 2007, at 6:26:02
one when I wake up, one at lunch time and 2 towards bedtime. It works for me but doesn't follow any logic. As far as I can gather the grogginess would be cleared at a stroke by Modafinil but it's too expensive here in New Zealand. The Dr's never heard of it of course. Mind you he hadn't heard of Nardil either, only what he read in his text book while training
Posted by stargazer2 on June 7, 2007, at 19:34:49
In reply to Re: Upping my dose to 60 mg...When to take?, posted by FredPotter on June 7, 2007, at 15:36:36
Today I took 2 in the morning and I was asleep at 3 pm so it definately makes me more tired. I think over time it will be better than taking 1 in the morning an 1 in the afternoon since that really makes me tired, but taking 2 at night is helpful with good sleep promotion. I wish I could take all 4 at night but then I may never wake up, but it may eliminate the daytime grogginess.
Is taking them all at night ever recommended when daytime sleepiness is an issue especially since the formula has changed and the pills dissolve much quicker than they ever did before Pfizer messed with the ingredients? Which leads me to my next question...
Have you ever submitted a formal complaint about the change in the medication since it is a very different pill than the original Nardil and supposedly Pfizer never applied for the formula change with the new ingredients. They considered it the same medication although users noticed a very differnt effect with differnt side effects.
One thing I notice is that the dosage required now is much higher leading me to believe that the coating contributed to a longer lasting effect and a lower dosage than is now required.
Does anyone know what the half-life is now since since the 2003 formula change, has it become shorter with the pill coating being softer? It seems like the effects are more immediate and not as long acting which may mean taking 4 at night is not so ludicrious if the effects are more immediate than in the previous pill composition.
Comments?...Stargazer
Posted by brooke484 on June 7, 2007, at 20:53:59
In reply to Half life of 'new' Nardil, taking 4 at night ?, posted by stargazer2 on June 7, 2007, at 19:34:49
I'm about to up my dose to 30 mgs. I take one when I get up. Do you remember when you took your second dose? My doctor says bedtime but I wanted your opinion.
Also, about the "new" nardil...I'm having major side effects (I hope I can even make it to 30 mgs) so I contacted my compounding pharmacist to see if she could do something with the pills. I'm still waiting for her to call me back but when she does I'll let you know what she says. That is why I have been trying to get in touch with Michael Bell. He used that Plasmin Plus and said it helped, but it's too expensive ($30 for 30 pills or something like that). I think he also used honey, but I wasn't sure how that could help.
brooke
Posted by stargazer2 on June 7, 2007, at 23:56:25
In reply to stargazer2, posted by brooke484 on June 7, 2007, at 20:53:59
Definately take your second dose at bedtime. The pills make me sleepy (don't they you?) so it helps at night to get a really good sleep.
I looked up Plasmin Plus but didn't understand what it is for. What are your side effects?
Mine were the ankle swelling, which is better after a few days and the GI upset, I guess from faster breakdown of the pills from the new formulation which melt in your hands if they get wet so they obviously breakdown alot quicker than the older version.
One other intersting thing I found was that the half life ranged from 1.2 hours to 12 hours but I think the twelve hours was before Pfizer messed with the hard coating on the pill, so I wouldn't be surprised with the shorter half life. I also read something about how once the enzyme is inhibited, then it is not as important to keep the higher dose in your system and a once a day dosing is enough. The rules of half lives and dosing were all over the place ,not consistent at all, so no wonder there are so many opinions on what is best to do, once a day dosing vs. several times a day.
I also read that after a few weeks on a higher dose, you can cut back to 15 or 30 mg and be Ok. Not sure of that either. Pfizer's package insert was no help either, no wonder, they were the ones who messed the original formula up causing chaos for everyone who was stable on it for years. Nice to know the pharmaceutical companies are motivated primarily by greed and profits, not patient care and accountability for consistent products.
Stargazer
Posted by brooke484 on June 8, 2007, at 8:32:39
In reply to Brooke, posted by stargazer2 on June 7, 2007, at 23:56:25
My main side effects are GI. Ugh. As soon as I take the pill I feel sick. I have stomach pains and am nauseous. I can't eat for a log time after I have breakfast. Does this go away? When I took the old Nardil I didn't have any side effects at all!
brooke
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