Toprol-xl Side Effects

[Domenick]

Re: Toprol-xl Side Effects

Thanks for your responses!

Mary and Rich, your words of wisdom will not fall on deaf ears. Thank you!

I do intend to be my own best advocate and to remain vigilant in my pursuit the best course of treatment.

I don't know why my doctor is taking me through a med trial. I will call the HCMA office and discuss this course of treatment. My instinct is to say no to this trial or find a second opinion if my doctor doesn't budge on his opinion. He has the tendency to do that. Although, he also has a tendency to come up with a "quick fix" solution and when I actually meet with him, his ideas sometimes change and he sets out on a new course. I'm not comfortable with the uncertainties that brings. So whether or not he finally determines the right course is this med trial he's proposing, has yet to be determined in my face to face with him in a couple of weeks.

I have heard great things about NEMC and Boston is like a second home to me. I visit it quite often and wouldn't mind heading there for treatment.

You're right Rich to wonder what's up. I don't have obstruction. I was put on Toprol XL after complaining of constant palpitations - which would last 10 minutes and sometimes longer. They were annoying and I lived with them for a while. Following my first ER trip - which was caused by the near fainting episode coupled with palpitations I detail in my earlier post - the cardiologist simply recommended it and I passed that recommendation along to my internist - via the written recommendation on my discharge sheet. Initially my internist balked, then he decided that a small dose of Toprol may help the palpitations go away and started me on 25 mg. Then I thought it would be good to see a cardiologist after starting Toprol and the palpitations not subsiding - rather than strictly relying on my non-cardiologist internist to manage my cardiology care. The first cardiologist I saw decided what I needed was a cardiac electrophysiologist and not a cardiologist. Ok, I thought, and so I went to see one in NYC. He was great, except after the echo and EKG and discussing my symptoms he had me in line for a series of tests leading up to septal ablation for the HCM and a separate ablation for the palpitations. He moved way too fast and he wasn't an HCM specialist. That's when I saw my current doctor after finding him on the Internet as the only doctor in the tri-state area specializing in HCM. I was very impressed with his echo and lab work - which seemed more in tune with trying to find out what was going on and whether I did indeed have HCM and not anything else. After a few appointments, my doctor upped the Toprol XL to 50 mg. The palpitations went away after the stresses in life, over and above the normal stresses, subsided. The Toprol XL didn't really affect the palpitations. It does, however, cause all those side effects and I really would rather not take it, if I don't have to.

The latest strategy is to block my heart from climbing to a rate that makes me SOB when I exercise - at least that was my doctor's reason for wanting to increase the dose of medicine that may be causing me to have SOB when I climb stairs. It's counterintuitive, but seemingly possible. If the heart has more time to fill, then it's possible that I will have less SOB with climbing stairs. Maybe? I did well on my metabolic stress test. Nothing there indicated deconditioning as the cause of my SOB - hence the "you're obese but not really obese" comment from my doctor. I think he wants to pin the SOB on my weight gain over the past couple of years (15 pounds) and not the Toprol XL, which I find odd since the metabolic stress test ruled that out.

Of course, all these questions will come up and be answered. I'd love to hear from anyone with similar circumstances and anyone else who's found either success or failure with Toprol - all of which will help me build my case for staying on it or coming off it altogether.

Thanks for the continued feedback!

[Cynaburst]

Re: Toprol-xl Side Effects

I have had great success with Toprol XL. Previously for several years I was on atenolol. I also took Norpace for a time because I also had a large outflow tract gradient. I had a myectomy last year, and after I had to increase my atenolol dose due to chest pain and atrial arrythmias after surgery, my doctor suggested that I try Toprol before he too was going to put me on diltiazem in addition to the beta blocker. What a difference! I have felt so so much better on Toprol than I did on atenolol.

I have that same problem that you describe about my heart rate not being able to increase enough and therefore causing SOB. However, it was so so much worse on atenolol than it is now on Toprol. I take more than you...150 mg. a day. My bottom line is that the Toprol takes care of the chest pain and gives me so much more exercise tolerance than I had with the atenolol that it is worth the trade off.

[ssavage69]

Re: Toprol-xl Side Effects

I just started this medicine last night. I had dizzy spells all day today, but i figure i have to adjust to it. good luck.

[BlueDevil]

Re: Toprol-xl Side Effects

I am wondering myself if Toprol is what's made me feel so very crappy for the past several months.

Life has been on a slow downward spiral since May. All in the space of a few months I had a respiratory infection, H1N1, and somehow became anemic enough to require two blood transfusions (one in late June and the other in October). Through all of this I seem to have become more symptomatic with the HCM or something else is going on. I am worried it means degeneration (and a need to revisit the possibility of transplant), damage from the anemia, or reaction to medication. To deal with the anemia, I was taken off warfarin for a month and -- you guessed it -- developed a blood clot in my heart that I'm hoping to **** doesn't break and cause a heart attack like the one I had last year.

Either way, whereas once before I was going to the gym three days a week, I am having days where physical exertion is a real problem. I get SOB easily and even just walking makes my head and neck feel like they're being squeezed in a vice. I had a really obvious pulse in my neck...looked almost like one of those air bladder special effects from bad 80s horror movies.

My doctor seems nonplussed about it, but I am wondering if it's one of the medications. Maron told me any degeneration would be gradual, but this has almost been overnight. I don't think it's a reaction to ramipril or amiodarone, so that leaves Toprol. I will be seeing my cardio in late February, so I guess I'll bring it up then.

[LindaSo]

Re: Toprol-xl Side Effects

I can't speak to the Toporol specifically, but are you still anemic? Reason that I ask is that I recently had some extensive surgery and lost enough blood to become very symptomatic but not enough to meet transfusion criteria. They gave it time, but my endurance was down the toilet. I was transfused and walking the halls in no time with no symptoms. Just a thought. Can you move your Feb appt up? Wouldn't hurt.

[BlueDevil]

Re: Toprol-xl Side Effects

The last time I had my hemoglobin checked was about a month ago, and it was at 12.6. They are reluctant to transfuse unless it's 9 or below, but the last time I had this done the ER doctor felt that the threshold ought to be higher for me so he ordered it; I think it was in the 10s at that point. I did feel WONDERFUL after the first transfusion but I didn't feel as good the second time. Lisa saw me here in MN in between transfusions, and even she noticed how pale I looked.

We are still trying to figure out how I lost so much blood. All we know is that it was gradual, and it is likely from the upper respiratory tract. It's been scoped twice, I've had my upper GI tract scoped, and had my sinuses checked, but nothing's come up. It has not completely stopped, but it's not like what it was before. They're talking about injecting me with irradiated blood cells so they can track them and see where they're ending up.

Stranger still is that I've had echos through all of this, and my EF and heart function are pretty much unchanged (35%), but I was in some kind of heart failure with an elevated BNP (1200+) and fluid backup (via CT scan).

[LindaSo]

Re: Toprol-xl Side Effects

At 12.6 you should be feeling better. Hmmmmmmm

[Cynaburst]

Re: Toprol-xl Side Effects

Tim - Sorry your not feeling well. By the way, my BNP is often 1200 or more and it doesn't seem to correlate with symptoms at all.

[BlueDevil]

Re: Toprol-xl Side Effects

Hi Cynthia:

My doctor gets all freaked out about a high BNP, but historically mine stays in the 300 range. It's been high before, and I try not to get too worked up about it.

I just want the life back I had before May. I've been forced to become so sedentary that I've virtually undone almost all of the progress I made from exercising. I'm tired all the time and sleep way too much.

[Cynaburst]

Re: Toprol-xl Side Effects

My local doc also used to get worked up about the BNP number, but like I said, it doesn't seem to correlate with symptoms, as I have had times where I felt worse when my BNP was in the 300s. My Mayo cardiologist tests BNP but always says that they really don't know what BNP means with regard to those with HCM, so he doesn't really pay that much attention to it. So, I have learned to follow my symptoms.

That being said, I truly understand your concern for how you are feeling and I surely hope that they can get you patched up.

I have taken Toprol for the last 3 years in doses up to 200 mg. and I have not found that it made me feel bad...though I have now backed down to 100 mg. as it was causing me memory problems at high doses. The problems are less at lower doses. In fact, I have found that Toprol was better for me than atenolol or short acting Metoprolol.

[HOCMark]

Re: Toprol-xl Side Effects

I can't speak to your other symptoms, but I can speak to mood. As I have posted on a couple of other threads, I suffered symptoms of depression on Toprol XL and had to stop taking it. For me it was a gradual change in my mood over more than a year that left me moderately depressed. Interestingly, WebMD says depression is an "infrequent side effect" of Toprol XL, but a "severe" one. I recently experienced similar symptoms on Atenolol. FYI, I did not have any symptoms of depression on Bystolic while taking it for almost a year prior to my myectomy.

Only you and you family can accurately assess how your mood may or may not have changed since you started Toprol XL. While Toprol XL may not be a factor in your recent medical challenges, it might be playing a role in how you are responding to them. Here's hoping your situation improves sooner than later.

[Pam Alexson]

Re: Toprol-xl Side Effects

Several things come to mind while reading your post and I do not now if they will be relevant or not.
You mention fluid back-up via CT scan.. is this in your lungs or systemically? Higher volume of fluid will give one a lower hematocrit and hemoglobin level and make them appear anemic.

Your description of your neck and head.. have you had your thyroid gland checked to be sure it is not enlarged or diseased from the amiodorone. I was only ever on amio for 3 months in 2003-04 and had a very enlarged thyroid removed in 2009. It has resulted in many issues before and since.

Have you had your urine checked to be sure there are no stones. Is your uric acid level elevated. You could have a little problem that is not visible to the eye when looking at your urine. I did and it became a big problem when I got on coumadin for awhile.

I can imagine you may be quite nervous having a clot and I am thinking of you and sending my positive hope that all will right for you.

Pam

[mark720]

Re: Toprol-xl Side Effects

been on that for almost 10years now and have almost all the same problems but they all say its the best for your condition so who knows anymore

[BlueDevil]

Re: Toprol-xl Side Effects

I finally had my follow-up and things haven't really improved.

My BNP has shot up to 1800, and it seems I am in congestive heart failure. I've been taking 40mg of Lasix once a day, and for about a week I felt much better. Not quite 100% "normal" but certainly better than I've felt in months. Thyroid function was checked, and it was OK. The clot isn't completely gone, but it's smaller. My ejection fraction was pretty much unchanged (30-35%). There's been no mention (yet) of adjusting any of my medications.

I fear this is the signal that I need to consider going back on the transplant list. He himself said it's moved a little forward from the back of his mind, but it's a bit soon to be having that conversation just yet.

*sigh*