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mtlieb
02-12-2003, 12:29 PM
Hi,

My cardiologist started me on Toprol-XL 50mg this week, and would like to get me to 100 mg if i do well on it. These were free samples so aside from being told to take one every morning i didn't get any other info. I've downloaded all the technical data i could find from pharmacy websites (thank god for the internet), and i've reviewed many of the previous posts here regarding beta-blockers. The side-effects sound a bit scary to me, and some of the scariest ones i probably shouldn't talk about here :shock:

Since most of you have had experience with beta-blockers, what sort of side-effects should i reasonably expect even if i do tolerate it well? How should i expect to feel on a daily basis? Is it going to take some time to build up in my system? This is the first long-term medication i've ever been prescribed, so some real-world advice would be helpful. Up until now the only meds i've ever taken are the ones that they give you to kill something, and ten days later you're all done, so this is very new territory for me.

Thanks a bunch,

Jim

Lisa Salberg
02-12-2003, 01:11 PM
The first few weeks you may be a bit tired but after that you should adjust and feel rather "normal". I have "vivid dreaming" which means I remember all my dreams and they are as clear as watching a movie. This is a side effect from the meds. Honestly - I do not mind...it is cheap entertainment! :lol: :lol:
People think I dream alot but the truth is we all have an average of 7 dreams per nigh but most people only recall bits and pieces of one or two.
If you read the "side effects" for any drug it is enough to make you want to live on water..until you read the report of what is in the water!
Do not be overwhelmed with all the data you looked at...real life is what matters and I have lived on beta blockers for 15+ years just fine :wink:
Lisa

Reenie
02-12-2003, 01:12 PM
Hi there. Well, I've never taken that particular drug, but I can tell you a little about beta blockers in general. Some people find that beta blockers wipe them out. Some have very vivid dreams and/or nightmares. Some have asthma like symptoms, especially if the already have asthma. Those are the most common sede effects I've heard of. I have taken at least 2 other beta blockers and never had any trouble with any of them. My husband takes atenolol and has no trouble either. You know the rule of thumb here... we're all different. Good luck.

Reenie

Oh yeah, almost forgot. It does take a few days or so to build up in your system.

Sarah
02-12-2003, 02:10 PM
Dear Jim,

I've been on one "flavor" of beta-blocker or another for the last 21 years, including Toprol and Toprol XL.

The only side effects I've ever had are weird dreams, fatigue, and the occaisional fuzzy-headed feeling when I've taken too much.

Everyone is a little different. For me personally, I found that nadolol (corgard) gave me fewer weird dreams than metoprolol (toprol), but that may not be true for you.

As for that one side effect you didn't mention, my brother has been on a betablocker for just as long as I have and he doesn't have that problem. ; )

PLEASE, keep in mind that medication side effects include everything someone experienced while taking that drug --even if it really wasn't necessarily caused by it, also the percentages of people getting the really yucky stuff is very, very low.

However, if after a few months you don't feel right, talk to your doctor about trying a different beta-blocker. There is a lot of trial and error in this.

take care,

S

PATSUB
02-14-2003, 07:41 PM
HI JIM,

I HAVE TAKEN TOPRAL XL FOR THE PAST TWO YEARS. INITIALLY, I WAS QUITE FATIGUED, BUT AFTER MY BODY ADJUSTED, I HAVE HAD NO SIDE EFFECTS.

GOOD LUCK!

PATSUB

mtlieb
02-14-2003, 11:27 PM
Hi All,

Thanks for sharing your experiences with the drug. I've been taking my pulse several times a day just to keep tabs on things, and it's been in the mid-nineties (resting) consistently, which is down quite a bit from 114. I still feel it pounding when i'm trying to sleep though, and since we were aiming for closer to 60 i'm sure my doctor's going to up my dose.

Side-effects haven't been bad so far, i've been pretty tired, with some occasional nausea, and although it's not listed on my sheet as a potential side-effect, i've had some strange episodes of blurred vision. All in all not bad though :)

Jim

Sarah
02-15-2003, 09:12 AM
Dear Jim,

Please let doctor know about blurred vision. Vision is something you don't mess around with --could be other things, but always important to check. Also, some vision disturbances are an early sign of stroke (not that you had a stroke, just giving you info here).

Anyway, try taking it after you eat by about 30 minutes and also try taking before bed.

Keep us posted,

S

Pat
02-15-2003, 12:02 PM
Dear Jim,

I was on Toprol XL for over three years. The dosage was gradually increased in an effort to deal with my symptoms of shortness of breath, chest tightness, and dizziness. The problem here is that the side effects cannot easily be separated from the symptoms of HCM. When we upped my dosage from 150 mg to 200 mg daily, I noticed what I call a shimmering (like a kaleidoscope) in my vision, especially when I exerted myself or the weather was hot. I asked both my cardiologist & my internist about it; neither had any idea what was causing it. The cardiologist was certain it was not the Toprol. The internist thought it was a visual aura for migraines--a concept I've seen others talk about here. (I've also heard from two or three others who got this visual shimmering on beta-blockers.)

When we stopped the Toprol (because I really felt yechy & wanted to try verapamil for a change), the visual symptoms stopped immediately! I'm now on nadalol (the verapamil didn't control my symptoms) at a comparably lower dose and the visual symptoms have not recurred, my resting pulse is in the 60s, and my blood pressure manages to stay over 100.

I'm not suggesting your Toprol dose is too high--your body may just be getting accustomed to it--but I'd say if the visual stuff continues for several weeks you ask the doctor to try a different drug. Even though the literature does not describe blurred vision as a side effect or a symptom of overdose, I believe it can be. This process of finding the best drug at the best dosage can be pretty long for all of us!

Good luck,
Pat

mtlieb
02-20-2003, 08:03 PM
Thanks for all your advice, you have been very helpful!

mtlieb
03-31-2003, 08:09 PM
Just following up on my earlier post...

I've been on the Toprol-XL for about six weeks now and although it is still early in my program, it has surprised me that every time my dosage is increased i experience the initial side-effects all over again and more severe. Is this normal? I kinda thought once my body adjusted, that would be it. I'm so naive :?

The biggest side-effects for me are definitely dizziness and fatigue. I really (and i mean really) have to force myself out of bed in the morning. I still get the blurred vision occasionally, but it's really the least troublesome of the side-effects. When i was increased from 100 to 150mg (where i am now), i was shocked that my heartrate and blood pressure actually shot up quite a bit rather than going down.

I've also experienced some things i never had before being medicated. I've had more PVC's than in the past (at least i think they are PVC's, where my heart stops beating for a second then starts back up with a thud). But now after one of these babies my heart spasms for about 4 or 5 seconds afterwards. That's new for me. It feels just like a muscle spasm i would have in my arm, only in my heart. What is the medical name for this? Oh well, i'm sure everything will be better once i get to my final dosage level and my body adjusts for good.

My heartrate is still high (mid-nineties) so i think several more dosage increases are inevitable. Yikes!

Thanks for the advice :)

Jim

kathyn2
03-31-2003, 08:26 PM
Jim, I don't know about your pvc's or heart flutters but just wanted to let you know that whenever I take any beta blockers or heart meds of any type I get ALOT of them. Way more than normal. If you find out what causes this, please let me know. So far everything I have tried to take made me feel worse than the disease. Including many more heart symptoms and exhaustion. I hope you get it straightened out soon. Doesn't sound like that drug is helping you much. Kathy

mtlieb
03-31-2003, 08:58 PM
Thanks Kathy,

I'm just a bit nervous about making the jump from 150-200mg since the one from 100-150mg was so rough, but i'm going to hang in there with the meds for as long as possible. Ablation and myectomy aren't options for me right now, what i really need is a new mitral valve. Given that as my only surgical option, i really (really) want the meds to work for me!

Hope you find your way through the med situation as well, and that you get to feeling better real soon :)

Take care,

Jim

Pat
04-01-2003, 12:52 AM
Jim,

Have you discussed all these effects with your cardiologist in as much detail as you have given us here? You should. And ask him (her?) about trying another beta-blocker. Each is different in its effects on each of us, so the only way to find out what will work for you is to try them.

It seems to me that the effects you're having (increased pulse, blood pressure, dizziness) may indicate this isn't the best drug for you.

And, remember, if others don't work as well for you as Toprol, you could always come back to it!

Pat

dughr
04-01-2003, 07:41 AM
I agree with Pat.

I was on Metoprolol for almost a year. I had horrible side effects that never seemed to go away. What was worse I wasn't even observant enough to link them until one day when it just occured to me that this was probably it. I talked to my doctor and told them I just think this one isn't working. I was on 50 mg. of Metoprolol and since was put on Atenolol. I tolerated the Atenolol so much better. Now I am up to 200 mg. daily and will eventually (in a couple more weeks) be to 300. So far I have not been able to attribute any harsh side effects other than some tingling in my extremities on occasion. Not to say Atenolol would be better for you, it just that I have learned through all this the beta blockers are not all created equal. That is to say one may work for you much better but you have to tell your doctor that these side effects are more than you are willing to bear. Hang in there.

Doug

Rich Miller
04-01-2003, 10:20 AM
whoops

Linda
04-02-2003, 09:54 PM
Jim, I agree with the above posts urging you to talk to your doctor about the side effects - esp the irreg beats. Your post helps to remind that people react differently to meds. There is no one magic potion for everyone. Linda

mtlieb
04-06-2003, 03:35 PM
Hi All,

I spoke to my specialist and he thinks it is too soon to talk about switching to another beta-blocker. I'll be going to 200mg on the Toprol this coming week since my heartrate isn't coming down very fast. As far as the additional heart symptoms i've been having, he says that the medication should not be causing these. Maybe they're just all in my head :roll:

We'll see what happens. I just want to get through the drug experimentation phase of this as quickly as possible. I'm looking for work right now and i couldn't even imagine having to show up for a new job tomorrow morning feeling like i do. Yikes!

Jim

Sarah
04-06-2003, 04:28 PM
Dear Jim,

I don't think your specialist is suggesting that what you are experiencing is in your head. (I've met your doctor a few times and I can't imagine that he thinks that --my two cents).

However, it is true that you need to give the drugs a fair shot. Also understand that even the strongest medication and even surgery is never going to make every symptom and every palpitation go away. There will almost always be a chest pain here and some tachy runs here and there. As long as the meds are keeping your rate down and your gradient down and the side effects aren't too taxing, that may be the most you can hope for.

If you are having more symptoms on the medication than before you started it or if it makes you feel worse after a few weeks, then it is time to talk about switching. If the beta-blocker is making you super tired, try taking it at night before bed. It can be hard to tell HCM tired from beta-blocker tired.

take care,

S

Toogoofy317
04-06-2003, 08:27 PM
This past year I have been on a ton of medication. The trial and error part is the worst. I started out on Toporol and after a couple of weeks it dropped my bp dramaticaly and I could not function as a human. There was at least 7 more drugs I tried. The second drug they gave me was verapamil at the time it did not help at all so we went on and on. The Cardaziem worked great for a while but I seem to get used to medications after about thirty days so within three months I was at max dosage and was not getting much relief. So they went back to verapamil and doubled the dosage from the first time. It worked for awhile and then it had to be doubled again my bp just would not hold out (80/50). So they started going on the not so conventional approach. In addition to the verapamil I was started on a long acting nitrate Isordil. The headaches were awful but they soon went away. With my last episode and a little CHF that too was doubled and Lasix was added. I still am not feeling good but I'm sure more tweaking of the medication is in order.

I'm not trying to depress anyone but sometimes the tweaking of the medication takes awhile. It feels like a rollercoaster ride and it does get disheartening to be told that a medication that did work so well doesn't anymore :? . Just my two cents worth! :wink:

Oh yeah, remember we are all different and I hope Jim you hit the jackpot the first time and find the right medication. :D Also as a side note thanks so much for your help with my inquires on assistance. I have a lot of numbers to call tomorrow. Hopefully something will come of it!

Mary S.

Amy N.
04-07-2003, 11:56 PM
Wish me luck, I'm to start Toporol XL. I've put it off over a week because last week I couldn't afford to be tired. I'm hoping that I don't notice any difference energy wise once I start the medicine. The doctor did tell me that it would take a couple/few weeks to get my body adjusted to it.

Good Luck to the rest of you finding what medication(s) work best for you.
Amy

mtlieb
04-08-2003, 09:17 AM
Hi Amy,

I'm sure you'll do fine on it. From what i have researched Toprol-XL is a great drug and lots of people do very well on it. I myself have had a few problems but that shouldn't mean anything to you since i am usually the exception to every rule anyway. LOL. Besides, even if it doesn't go as well as you and your doctor had planned, don't worry. There are so many drugs available for this, i think you'd have to be pretty lucky to get the right one and the correct dosage right from the start. My doc started me out at 50mg and is upping it 50mg more every two weeks until we reach a level that controls my HCM symptoms with the least amount of side-effects. That's standard protocol, and i'm sure yours will do something similar.


If you're just starting out on it make sure you take it with food, even if just a few crackers or a pop tart or something. I made the mistake of taking my first pills on an empty stomach and the little buggers didn't stay put for very long :shock:

Good luck,

Jim

mtlieb
04-08-2003, 09:39 AM
P.S.

Amy, don't read this one. LOL.

...even the strongest medication and even surgery is never going to make every symptom and every palpitation go away. There will almost always be a chest pain here and some tachy runs here and there. As long as the meds are keeping your rate down and your gradient down and the side effects aren't too taxing, that may be the most you can hope for...

Sarah, in regard to your post... I've been on the Toprol-XL for almost two months now and if you re-read my previous posts i think you will find that my heartrate is not coming down, my HCM symptoms are actually getting a bit worse, and with each dosage increase the side-effects are getting quite taxing in fact.

So.... given that, at what point do i just say 'enough is enough' and tell my doctor i'm not going to take this med any more?

Jim

dughr
04-08-2003, 09:48 AM
Hi Jim,

I did Metoprolol too. Hated it. I had nasty side effects some of which I can only say I won't even talk about. My doc switched me to Atenolol and has done the exact same thing...50 mg. increase every 2 weeks. I will be to 250 next week. The thing is, I don't have near the side effects with this one, actually almost non-existant, but I am also getting no relief of my high blood pressure or chest pains etc. It is almost like I am taking nothing at all. I would say if the side effects are that bad you call the shots with the doc. He isn't taking them, you are. I am very fortunate to have a doctor who listens very carefully to what I say, they aren't all that way.

My 2 bits worth.
Doug

mtlieb
04-08-2003, 10:02 AM
Hey Doug,

Thanks for your post! I'm really glad you brought up the subject of Atenolol. My sister is on that drug (she doesn't have HCM she takes it for something else) and she has been very free of side-effects right from the beginning. The only thing she says she doesn't like is that it dropped her heartrate a good bit. But hey, in my case that's exactly what i'm looking for! As i understand it Atenolol is also a bit cheaper than Toprol, so when my free samples run out i won't be paying an arm and a leg for the stuff.

If i were to switch, and i know many of you have tried many different drugs... do you have to be 'weaned off' the Toprol slowly then start all over with a low dosage of Atenolol, or do you just swap meds dose for dose? I know there's risks involved with stopping beta-blockers abruptly, but i wasn't sure what the protocol was if you were just changing to a different one.

Thanks!

Jim

dughr
04-08-2003, 10:10 AM
Hi Jim,

In my case they just swapped out the drug. No weaning off. As for the cost I am deeply fortunate to be employed with good health care. I spent 17 months unemployed and got my diagnosis while unemplolyed as well. So I am keenly aware of how it can affect you. So in my case I pay only a co-pay so I don't know the price. And like you, I had only samples from the docs to work with before.

Best of luck

Doug

Rich Miller
04-08-2003, 11:45 AM
Doug ,You need to talk to either your pharmicist or you cardioligist , Atenolol 's mfg insert states "no increse in benifits with dose of over 100mg" . mine doubled mine to 200 and i have had nothing but trouble since .That was in sept ,01 and I am just now getting straightened out . so be careful and check -it out !! now I know we are all different ,but this is the mfg. recomendation. good luck , Rich

Sarah
04-08-2003, 12:13 PM
Two things:

Well, Jim, yes, two months is a long time and if you don't feel better, then you don't. There are other beta-blockers to try, and other drugs.

You CAN switch from beta-blocker to beta-blocker without tapering down and then up again. It is going cold turkey on _all_ beta-blockers that is going to get you into trouble.

take care

S

mtlieb
04-08-2003, 01:45 PM
Thanks Sarah,

It's good to know that i don't have to go through the long process all over again when switching :)

Jim

Lisa Salberg
04-08-2003, 01:58 PM
Jim,
Switching meds is something that you will have to discuss carefully with your docs. There maybe something in that beta blocker that works well for you and that is where you are getting the benefits from.
In my case I was once given a generic (by mistake) although it was to be the "same" my symptoms kicked up BIG time after 4 days on it...I went back to my normal meds and all was fine??
All drugs are not the same and caution must be used when switching from one to another.
Yes, Atenolol is cheaper and works very well for many people...but Toprol has properties that are slightly different also Toprol has a long acting formula... I am not sure which your on but atenolol is not long acting so you may have to take more pills per day (that will add to the cost).

Just more to think about (I know you love to think...and research :wink: )

Be well,
Lisa

dughr
04-08-2003, 03:03 PM
I can't find that in the literature of Atenolol that over 100 mg. there is no benefit. Thing is my cardiologist is one of the top in this field. I see the group at Tufts NEMC. I find it hard to believe they would prescribe over 100 if it was a no benefit thing.


Doug

Pat
04-09-2003, 12:21 AM
Jim--and all,

I've stayed out of this for awhile, but I've just GOT to jump in now! :D

It took me quite a while--over two years in fact--to decide I had to take a lead role in discussing my own drug therapy with my cardiologist. By that I mean I have now learned to list the desired effects (reduced blood pressure, reduced angina, slower pulse rate, minimal dizziness, minimal shortness of breath) and the side effects I'm experiencing (with different drugs I've had diarrhea, strange visual symptoms, much worse heat intolerance, worse angina, nightmares, and more). I keep track of those signs & symptoms and now present them matter-of-factly in my discussions with the physician. In January--with Lisa's & Dr. Shah's encouragement--I even suggested a different drug by name (nadolol). The physician agreed to try it and it's been the best by far for me. I remind myself that the doctors are the experts in these drugs in general--and WE are the experts in how they affect our own bodies.

Atenelol, Toprol-XL, and nadolol are all listed in the pharmaceutical literature as having a duration of 24 hours. So, theoretically, one could take any of them once-daily and get good coverage. For myself, I prefer dividing the dose and taking it morning and evening; I think I have less peaks and valleys in drug effects.

Jim, I started on increasing dosages of Toprol over a period of two years. In retrospect I now know neither I nor the physician recognized the point where I stopped experiencing symptoms of HCM which might be relieved by increasing the dosage and started experiencing drug side effects which would be relieved only by decreasing the dosage or changing to another drug. The symptoms are that similar! I felt worse and worse as the dosage increased and thought it was the HCM.

I think you should have had substantial relief by now if the Toprol were going to help. I encourage you to take your list of signs & symptoms to the doctor, tell the doc you've seen these other drugs mentioned by other HCMers and ask for a trial with another drug. (Nadolol is also a generic formulation and is not very expensive. Atenelol is even less expensive.)

Another thing for all of us to keep in mind is the role and influence of the drug company "detail men." These are the salesmen and women who drop all those free samples at the physicians' offices to keep the drugs at the forefront of the docs' thinking. So when the doctors reach for the prescription pad, they will think of those drugs. Drug detail men don't market the generic drugs or those which are past patent protection as they make relatively little money for the drug company. It is no surprise that so many of us start with Toprol-XL; it's still within patent and our physicians get free samples. Not to say it's not a good drug--I'm sure it is VERY good. But there are others equally good which might work better for some of us and their names may not pop as readily into our doctors' minds.

Good luck, Jim! Keep us posted!
Pat

Sarah
04-09-2003, 12:50 AM
Dear Pat,

You make some excellent points. It is important to listen to your body and to communication clearly with your doctor what you are experiencing regarding symptoms and side effects.

It is often hard to tell the difference between a side effect and the HCM, especially with things like fatique and dizziness. Changing (with doctor's permission) when and/or how you take your meds can sometimes shake those kinds of things out or narrow down the culprit.

There are many different beta-blockers out there and sometimes just switching from one to the other makes a big difference.

The prescription medication industry certainly has some issues, however, doctors don't prescribe based on patent-rights. I've seen the statistics on Toprol XL and because it is time-released, you don't have to split your dose as you described b/c you get a steady-state release of the medication. Drugs that work better get prescribed more often.

I'm sure that Jim and his doctor will find something that works better for him.

Personally, I've been on three different beta-blockers myself and found each to have its own quirks.

S

mtlieb
04-09-2003, 02:53 AM
Pat, Sarah, and all,

I promised myself i wouldn't post anymore for at least a couple days. LOL. I've just been yammering on and on today. Yikes! But i can't let you guys take the time to write such good detailed posts and not respond :)

I know what you mean about symptoms vs. side-effects and i think i have a pretty good grip on what's HCM-related and what's drug-related. Mostly because, after all these years of walking around with untreated HCM, i don't think my symptoms just coincidentally got so much worse now that i am on the meds. And of course the blurry vision (it's very sporadic guys, please don't think i'm going blind here) and persistent nausea are totally new. So i think i have a handle on all that.

BUT... even I am willing to admit (don't fall off your chairs here folks) that it's going to take a lot of fine-tuning to get me straightened out on meds alone. Surgery is not an option for me. Perhaps as my heartrate drops, it's going to flip out on me for a while while it adjusts, and perhaps with a couple more weeks the other side-effects will go away as well.

OR... maybe tomorrow when i bump myself up to the next dosage level (200mg) and i spend the day puking and falling down, i'll have my answer :shock:

I'm going to give it two more weeks (max), then call my doctor for a new med.

JIm

mtlieb
04-24-2003, 03:28 PM
Hi All,

Haven't gotten back here to the meds section in a while. I bumped myself up to 200mg after my last post on the 9th, and after about three days the side-effects started getting a little better each day. I'm at 250mg now and the side-effects are even less, although i still sometimes feel like i could sleep 24 hours a day if i let myself. Yikes!

I have no idea why the 150mg dosage made my heart flip out so much, but increasing the dosage above that certainly seemed to help. 100mg... no problem. 200mg... no problem. It was the magical number 150 that made my heart do a tap dance in my chest. Odd huh? Right now i would say my hcm symptoms are about what they were before i was medicated. But at least i don't have to puke all the time now :)

So... no progress yet, but with the side-effects diminished we can continue playing with it until we (hopefully) get to an effective level. I'm getting ready to jump to 300mg tomorrow as soon as the doc gives me the okay.

Jim

Reenie
04-24-2003, 03:45 PM
Good luck, Jim.
Oh, and no puking. http://www.clickchicks.us/forums/html/emoticons/puke.gif

Lisa Salberg
04-24-2003, 04:10 PM
Jim,
Looks like your on the right path...I hope all goes well...let us know.

Lisa

Linda
04-24-2003, 04:33 PM
Jim, good luck with the next increase - Linda

mtlieb
05-11-2003, 12:54 PM
Goodbye Toprol!

Well i finally told my doctor i simply can't take this darned med anymore, and i'm sorry i waited three months to do it. I've had my share of ups and downs on the stuff, but let me tell you, when i reached 300mg i just plain went wacky in the head for a couple of days... severe depression, i coudn't function properly, i couldn't even bring myself to leave the house. But it's when i laid awake one night (all night) having some pretty dark thoughts about why life really isn't worth living anymore that i knew there was a BIG problem. Yikes! That's not me at all!

I'm on atenolol now, 100mg, and already i'm feeling better than i ever did on any dosage level of Toprol. My heartrate is down, and except for when i really push myself, i can't even feel my heart beating unless i look for it. That was actually kinda scary (and funny) the first time i noticed it. (Why can't i feel my heart beating anymore? Am i dead?)

At any rate, i'm sorry i wasted almost four months with the Toprol when i knew all along in my heart (pun intended) that it just wasn't working. I've been on the atenolol for less than a week and what a difference! Lesson learned. Listen to your body... even if it sometimes means your doctor is wrong. I trust my own body a heck of a lot more than my doctor.

Thanks for the support!

Jim

Lisa Salberg
05-11-2003, 01:10 PM
Some beta blockers work like a charm for some and dont work worth a darn for others.. frustrating yet very true!
I hope this one works out better for you.

Be well,
Lisa

Reenie
05-11-2003, 01:44 PM
Jim, just popping in to say that I'm glad you're feeling better.

Reenie

Pat
05-11-2003, 01:58 PM
Jim,

I, too, am glad you're now feeling better! And isn't it great that there are some options in drug therapy for us when one drug or another doesn't work out?

And, Jim, thanks for letting us know what's happened with you. I often find myself thinking of some thread or another here and wondering what happened for that person. It's nice to know.

Pat

shirleymahoney
05-13-2003, 06:59 PM
i'm on 200mg of toprolxl, has anyone ever gotten nausea from taking this, i've been on this for a month now. i tried to cut grass yesterday,it was cool lower 70s , got maybe 8 rows had to quit SOB, and coughing, got chest pains last night and woke up this morning with nausea and had it all day. Never had nausea, before taking this med, i have hocm, was diagnoised in March Thank You shirley

kathyn2
05-13-2003, 07:16 PM
I got nauseous from it. Very nauseous. But the, I get nauseous from just about ever beta blocker and or calcium channel blocker they tried on me so I probably am not a good example. I have felt worse (heart wise) on all the heart meds tried on me than better so I am not taking anything at this time.

Lisa Salberg
05-13-2003, 07:54 PM
Please discuss your symptoms with your doctor. You may need to adjust your meds, or it may be unrelated to your heart/meds...therefore it is wise to check it out. This is not a common side effect we hear about although it has come up from time to time.

Be well,
Lisa

mtlieb
05-14-2003, 11:18 AM
Shirley,

I had a lot of nausea from the Toprol as well. It seemed to help quite a bit if i took it with food. I'm sure you already new that but it never hurts to suggest it anyway. I actually took mine while i was eating. Kinda snuck it down into my gut along with a mouthful of food. LOL. I hope the Toprol works well for you!

Jim

Clive
05-14-2003, 02:47 PM
I've recently been diagnosed with HCM. They started me on 50mg metaprolol twice a day and 10mg of a calcium channel blocker (amlodiapine) that I was taking already for mild hypertension, plus clopidogrel 75mg (this is a platelet reducer, like aspirin).

The combination gave me a BP sub-100 and a pulse of 40. So I reduced the metaprolol to 25mg, was still too much so I eliminated the amlodiapine completely. My BP is now usually over 100 but my pulse rate is still only about 45 - 50, which I regard as very slow.

I was interested to note one comment regarding the shimmering in the vision, like a kaleidoscope. I have had this for years, and always assumed it was caused by all the acid I took in the 70's. Maybe not . . . and since i started metoprolol I noticed in the last week, tingling in my little finger, left hand, I am now wondering if this is a drug effect?

Best wishes
Clive

Lisa Salberg
05-18-2003, 10:54 AM
Clive - Welcome to the site. Re the vision issues - I tend to doubt it is due to the "acid in the 70's" as I too and many others have similar symptoms, while I can not speak for them I myself never "did" any acid 8-) in the 70's-80's or otherwise.
Your heart rate being so low may be caused by a degree of heart block - rather common in HCM and if it becomes a problem a pacemaker can be used to get the rate up or ensure the rate is maintained.
For those with very low heart rates beta blockers can be hard to tolorate - other meds may be used such as calcium channel blockers.
Be well!
Lisa

mtlieb
06-15-2003, 10:54 PM
Hi All,

I'm quite happy to report that the atenolol is still working very well as compared to the Toprol-XL and the only thing i've needed to adjust is that i am now splitting my dosage to get a little better round the clock coverage. I do wish they would make the darn pills a little bigger though. Rather than being able to cut a 100mg pill in half, i've had to get 50mg tablets which are about the same price so i'm paying twice as much as i was. Oh well! I'll consider myself lucky if that's the biggest problem i have to deal with from now on :)

One thing i did want to ask about is that i am getting a little more dizziness and nausea now than when i was taking the one full dose every day. I would have thought splitting the dose rather than taking it all at once would have decreased side-effects rather than increase them. Anyone have a similar experience?

BTW: In regard to Clive's post, i too get the vision problems from time to time. I've had my vision checked, still better than 20/20 and nobody has ever been able to find anything wrong in that department. Has this ever been documented as a bona fide HCM symptom, or just something a lot of us seem to get for no good reason?

Thanks much,

Jim

Lisa Salberg
06-16-2003, 07:35 AM
Many with HCM report occational vision problems. This has not been reported well in the medical liturature but we hear it a great deal at the HCMA. This seems to go hand in hand with head aches ...why...not really sure it appears to maybe be a blood flow issue???
When we know more so will you :wink:
Lisa

john m. jordan
06-18-2003, 05:56 PM
can someone distinguish between metoprolol toprol and toprol xl and lopressor, cant seeem to distinguish all this in the posts. thanx, john

Sarah
06-18-2003, 06:05 PM
Lopressor and Toprol are just different company's brand names for metropolol. Toprol XL is a long-acting formulation of metropolol.

john m. jordan
06-18-2003, 06:08 PM
sarah, thanx, for the speedy response. john

sheryl
06-24-2003, 12:19 PM
I have been on Toprol XL 50mg qd for approx 6 months. I do not have the palpatations like I did prior to the Toprol XL BUT the fatigue is awful!! I realize I am on a low dose but I have a low tolerance for medications, thank goodness for small blessings. I am discussing with my doctor about trying a different medication. Also, I am having head aches with blurred vision. I thought it was just me until reading this post & finding out many of you are having the same problem.

This website has been extremely helpful to me. Thanks, Sheryl

mtlieb
06-24-2003, 01:06 PM
Sheryl,

Fatigue was one of my biggest problems too, and at one point when i was at 300mg of Toprol i could barely make it out of bed. LOL. But that doesn't mean it's a bad drug, it was just a bad drug for me :shock:

Hope all works out well for you!

Jim

Lisa Salberg
06-26-2003, 06:15 PM
Jim,
good point... Years ago I went on Verapimil...and felt really bad!... Then went back to corgard (beta blocker).... THEN I started feeling bad on the corgard... and it was suggested that I add in some verapimil. Needless to say I was not thrilled...but I figured "why not ... I'll try ANYTHING to feel better!"
Well Surprise Surprise! The combination of the two has been working very well for me!
Some drugs are not for "everyone" However...sometimes it may help to revisit those we once did not like...
Food for thought...
Lisa

Chris Brown
06-27-2003, 05:04 PM
I was hoping I could add a page 5 to this reply. Is this a new record for so many replies to a message?
I am currently taking 400 mg a day of metroprolol. 150 morning, 150 afternoon and 100 evening. My card said he had a patient on 600 mgs. Does this sound right, is their anyone on these high dosages that can reply? My medication seems to be working, my only problem is getting tired in the afternoon.
Thanks
Chris

mtlieb
06-27-2003, 07:22 PM
Chris,

I only got as far as 300mg on the Toprol-XL, but i'm sure there's someone here who has experience with the higher dosage you're speaking of. I do remember being told by my specialist that there are people out there as high as 600mg. I hope you have great luck with it and that your fatigue goes away in time. Seems to be a pretty common side-effect.

Jim

Lisa Salberg
06-27-2003, 08:05 PM
600 is a very high dose and I think we must keep body mass in mind when looking at such numbers. Those larger folks may need the extra dose due to size... if you are of average weight and height - that is a REALLY high dose...if your larger it may only be 'real high' :wink:
Lisa

Julie E
07-20-2003, 01:04 PM
Ok I guess I'm still confused on your description of Toprol and metoprolol. A few posts back it looks like you are saying they are the same drug just different names..am I understanding that correctly?

I ask because I was on 50mg of ToprolXL for about 3 years. Back in April starting having hundreds of skipped beats. After a holter my EP said some people do better with metoprolol so I switched to that 1 month ago. Did well for about 2 weeks then had a bad 2 weeks of palpitations but doing better the last few days fingers crossed (although I am wearing an event moniter because I have had 3 tach episodes recently)Anyway now these posts have me confused as to the difference of these drugs???

Thanks!
Julie

Pat
07-20-2003, 01:36 PM
Julie,

Metoprolol is the generic name for the drug. Well-known trade names for metoprolol include Lopressor and Toprol XL. There can be slight chemical differences among the trade-named varieties in the inactive ingredients, but the active ingredient is still metoprolol. The primary difference which you and I would notice between generic metoprolol and Toprol XL is that Toprol XL has a much longer length of action. Toprol can be taken once-daily whereas to get 24-hour coverage, the metoprolol usually has to be taken more than once daily.

That said, there are individual differences among us and it is possible that you would tolerate the metoprolol better than Toprol. I'd think it is unlikely, though, so would recommend you discuss your symptoms with your doctor. A totally different drug (beta-blocker or not) might work better for you.

Check your drug inserts from the pharmacy or manufacturer. Also Medline has good info at http://www.nim.nih.gov/medlineplus/druginfo/betaadrenergicblockingagentssy202087.html

For most of us--after enough trial & error--we find a drug which works better for us, relieving the symptoms with less side effects! Good luck!

Pat

mtlieb
07-20-2003, 03:13 PM
Julie,

Pat is correct, Toprol-XL is metoprolol (that is where they derived the brand name from... me-Toprol-ol). There are actually several forms of metoprolol being discussed on this thread, so it can be confusing, but they are all basically the same drug.

Lopressor and Toprol are common brand names for plain old metoprolol. They've been around a long time, so they are also available in generic form, which is usually called Metoprolol Tartrate. That is what you are now taking. The only drawback to these older drugs, or their generic version, is that you have to take them more often throughout the day to maintain coverage.

Toprol-XL is a newer, long-acting form of metoprolol that you only have to take once a day. It seems to be the beta-blocker of choice right now among heart docs, and the drug company that makes it is throwing out lots of samples to the docs to help promote it. It's a good drug, but since it is newer than the rest, it is still under patent protection which means it won't be available in generic form for some time. Subsequently, it can be quite expensive.

I guess what i don't understand is... if you were having problems with the long-acting Toprol-XL... why does your doctor feel you would do better on generic metoprolol, which you have to take more often?

Jim

Cynaburst
07-20-2003, 04:14 PM
"Blocadren, Corgard, Lopressor, Sectral, Tenormin, and Visken are all brand names for plain old metoprolol."

Just a point of clarification.....Corgard is the brand name for nadolol, a different beta blocker, and Tenormin is the brand name for atenolol, yet another one.

I don't know about the others, but they are all different drugs, all beta blockers, and in the same class, but with different chemical makeups.

Sarah
07-20-2003, 06:25 PM
Blocadren, Corgard, Lopressor, Sectral, Tenormin, and Visken are all brand names for plain old metoprolol.

This is not true. The list of drugs named are all in the FAMILY of drugs called beta-blockers, however, they are all different drugs with their own generic name. They are chemical variations of each other. Think of them as siblings.

Some are more specific to the heart/brain system and some act on the whole body and other small variations of how they work -but in essense they all do the same thing: prevent adrenelin from increasing your heart rate and prevent your heart from beating too hard. THey also lower your blood pressure.

Please see: http://www.tmc.edu/thi/betameds.html for a discussion of betablockers and a list of brand names. Go here: http://www.4hcm.org/phpBB2/viewtopic.php?t=2059&highlight= for a list of links that are "tried and true."

Brand/Generic break-out: Blocadren= timolol; Sectral=acebutolol; Corgard=nadolol; Tenormin=atenolol; Visken =pindolol.

However, Lopresssor IS metroprolol, too, as is Toprol and Toprol XL. (XL being a long-acting formula). It is unusual to have several brand names in the same country for the same drug, but there it is.

Please note that brand names for generics will be different in other countries --these are all US brand names we are talking about.

Clear as mud? Good!

:D :shock: :roll:

S

mtlieb
07-20-2003, 06:35 PM
My apologies,

I got that list from drugstore.com under the heading of metoprolol. As it turns out, they had listed common brand names for all beta blockers and not just metoprolol. I edited my post to take care of the inaccurate data, and thanks for the clarification! I believe my post is accurate :)

Jim

Sarah
07-20-2003, 06:37 PM
Dear Jim,

We were writing at the same time. I'm going to leave my post as-is, just in case others find that their pharmacy is innacurate as well. It is also very confusing unless you are used to it.

take care,

S

Julie E
07-21-2003, 02:12 PM
Thanks Pat!

I guess I was confused because when Toprol XL was no longer effective, you would have thought I would have been put on something different, not the generic of the same drug?? Although the pharmacy I go to told me Toprol XL does not have a generic but that the two drugs do have the same active ingredient.
Anyway, he does not want to change anything until I am done with my 30 day event moniter so for now I wait. Actually the last three days have been really good as far as palpitations, I just get that mid morning DRAG.....so we shall see.

Thanks for the info.

Julie

Julie E
07-21-2003, 02:24 PM
Jim,

Your thoughts are my thoughtss. When they switched me 6 weeks ago the nurse told me my Ep sometimes sees that patients do better with the metoprolol. At the time I thought they were totatlly different, but have since learned otherwise. I actually was cutting my Toprol XL in half beacuse awhile back I was getting fast heart rates and got shocked a few times(have an ICD) so they were trying to even the dosage out more. It has only been since April I started getting lots and lots of palpitations and they switched me from the Toprol XL. Anyway, I'll give it a try and see how it goes.

Thanks for the help.
Julie
PS. I work for a doc who specializes in pain management and I see first hand what the drug reps do. We have more pens etc. then we know what to do with and we eat quite well there if you know what I mean.

kthanki
07-21-2003, 06:37 PM
You probably already know this, but just want to make sure that cutting Toprol XL does not work. All extended release drugs are designed with a coating for slow release through out the day.
Once you cut, chew or break the tablet, the coating is gone and it is not longer an extended release drug, and the effect may wear off in few hours and the symptoms will be back.

mtlieb
07-21-2003, 07:59 PM
Hi,

I'm pretty sure you can cut a Toprol-XL tablet in half without losing any effect. The pills are scored for that purpose, and the documentation states that you can cut the pills in half. You are correct however that the individual halves should not be chewed or broken. The documentation states that as well.

But as far as cutting the pills in half, there's probably more people here doing that than not, since there is so much experimentation going on with different dosages.

Thanks,

Jim

Clive
07-21-2003, 09:16 PM
Does anyone know if there are lower dosages than 100 mg available? The lowest dose I can find locally is 100 mg. I only take 25mg and as you can imagine, cutting a tiny pill into four is rather hit-or-miss to say the least.

bryan
07-21-2003, 09:52 PM
Clive,
Toprol XL does come in 50mg Tabs.

mtlieb
07-21-2003, 10:00 PM
Clive,

Toprol-XL is offered in 25mg, 50mg, 100mg, and 200mg.

Jim

Clive
07-21-2003, 10:10 PM
I was after ordinary metoprolol . . . forgot the topic . . .

bryan
07-21-2003, 10:30 PM
Clive,
Metoprolol comes in 50mg also.

Cappy
08-12-2003, 10:10 AM
I was just moved from 100mg BID to 75mg BID. I think its a real PITA to split the 50's in half, but insurance dictates that I can only have the 50's. :roll:

Reenie
08-12-2003, 10:40 AM
Cappy, do you have one of those pill splitters? Those pills can be too small to break easily. Good luck.

Reenie

Cappy
08-12-2003, 11:04 AM
Nope, but I think I may invest in one. Thanks for the tip

shirleymahoney
08-12-2003, 04:51 PM
does anyone know how long toprol xl stays in your system, i for got to take mine lastnight, i'm on 200mg a day
thanks shirley

shirleymahoney
08-12-2003, 04:51 PM
does anyone know how long toprol xl stays in your system, i for got to take mine lastnight, i'm on 200mg a day
thanks shirley

Lisa Salberg
08-12-2003, 05:18 PM
I am not sure what the span is...take your meds as soon as you remember...and call your doc if you have any questions.

Be well,
Lisa

Cappy
08-12-2003, 06:37 PM
Here is the Toprol XL website. It should answer most of your questions

http://www.toprol-xl.com/patients.asp

shirleymahoney
08-13-2003, 08:43 AM
Lisa thank you

Cappy I'll look that web site up Thank you
Shirley

mtlieb
08-13-2003, 02:45 PM
I have a six-week supply of Toprol-XL 200 mg tablets left over from when i was taking it. I suppose that technically i'm not allowed to just give them away, but i sure hate to throw out such expensive medicine, especially when there are folks without prescription coverage who are paying for it out of their pockets. The bottles are still sealed, and the tablets are scored, so anyone taking 100mg daily could cut them in half and have a 12-week supply. Any ideas folks?

Linda
08-13-2003, 03:04 PM
It's such a shame to waste these expensive meds, but dispensing meds requires a license. A private message for personal dealings would be best. Linda