Starting Sotolol

[Pam Alexson]

I will be going inpatient for a few days after May8th to get started on Sotolol and to see if it will help with keeping my a-fib at bay.

How long average 1-3 days?

What issues did anyone have then , have now ?

Any advise helpful. Dr M mentioned another one ... starts with a D. Dolfet...??? He says they have used that one with HCM ers also with success.

Thanks for all your help..

I have been dreading this next step and addition for some months now but realize that a-fib is taking its toll on me. As Dr. Maron describes it, it is likely because of my very stiff left ventricle ( severe diastolic dysfunction ) that I am losing ground and positive progress with regards to my functioning. The a-fib severely/negatively impacts my heart each time I have it and it is likely visiting more times then it is being captured on my recorder. These negative effects from it and all that I go through each time no matter how short are causing a cumulative effect. So here we go...

Pam

[MaryO]

Re: Starting Sotolol

Pam... I have no advice, as I have no experience with this... but I just wanted to let you know I will be keeping you in my prayers, that this will go well for you. I'm sorry it's been rough going. I hope this will help you. Many blessings, love and light.... Mary

[Largehearted]

Re: Starting Sotolol

Pam.

My experience with Sotolol was not that difficult. I was in the hospital in 2003 due to A-fib and they thought I needed something stronger than Atenalol. They started me out on a fairly high dose and have increased it a couple of times since so that now I am up to 320 mgs a day (one morning and evening). Like the Dr. said once, “You have a device, so we know it won’t kill you.” There is a danger for elongated Q-T waves.

Positive effects:

• Most of the time I have far fewer, noticeable PVCs than I used to have.
• A-fib has been well controlled with only a few breakthrough episodes since July 2003.

Negative effects:

• Sleep disturbances! I rarely sleep more than 3-4 hours soundly, and then I doze in and out the remaining hours of the night.
• Sometimes my dreams get pretty dark, and they are often quite vivid.
• I am not convinced that the beta-blocking properties of Sotolol are everything I need as someone with HCM.
• The dosing instructions say that you need to take the meds at 12 hour intervals and one hour prior to eating or two hours after eating. Trying to keep all of that straight is a pain at times. Since I wake up 4-5 times a night I usually get awake sometime near 4 a.m. and start my day by chugging Sotolol first thing. Then I make sure I don’t eat anything after 2 p.m. so I am good to go for the afternoon chugging around 4 p.m. (at least one hour before dinner).

So this is my experience with Sotolol. Hope it is helpful.

Peace,

Leon

[Reenie]

Re: Starting Sotolol

Pam, I hope this works for you. Please keep us posted.

Reenie

[mtlieb]

Re: Starting Sotolol

Hey Pam,

Hope the Sotolol does the trick for ya. If I may ask (because I have always wondered about this myself) why is it that folks are put in the hospital when they start Sotolol? What are the possible side-effects that warrant such observation?

Jim

[Pam Alexson]

Re: Starting Sotolol

Thanks everyone for your kind words and Leon great list for me to have ...very helpful.

Jim,

here is the list and I would wager it is the abnormal heart rhythm that tops the list for requiring hospital admit. Dr M says," well you have a defibrillator so you are covered there." Yeah I can only imagine if something weird happens and my device fires... now that is something I do not desire in my repetoire of HCM experiences.... And if I get the facial muscle drooping / wasting I will be fully blood hound material except that I don't have a tail to wag...LOL

Pam



Common side effects of Sotalol hydrochloride:

Shortness of breath
Fatigue
Dizziness and light-headedness
Headache
Fever
Excessively slow heart rate
Low blood pressure and faints
Abnormal heart rhythms
Chest pain
Palpitations
Fluid retention
Rash
Diarrhoea
Nausea and vomiting
Flatulence
Indigestion
Abdominal pain
Fever
Weakness
Vertigo
Sleep disturbances
Depression, mood changes and anxiety
Loss of sensation
Eye irritation
Blurred vision
Taste abnormalities
Hearing disturbances
Abnormal sexual dysfunction

Uncommon side effects of Sotalol hydrochloride:

Heart failure
Skin thickening
Itching
Unusual dreams
Wasting of facial muscles

[Shelly]

Re: Starting Sotolol

I am so happy to have found this question. I was just given a prescription for sotolol last week. I'm not too excited about taking it. I have been having trouble with a few syncope episodes. My ICD is pacing me out of some arrhythmias, luckily. My earlier episodes were recorded at 1:00 in the morning a couple times. I got to sleep right through those. Any advice about the medicines or next step.

[viola]

Re: Starting Sotolol

my husband is on sotolol and hes taking 320mgs a day. he also has pretty dark dreams and sleep disturbances but its helping with his a-fib. he has a pacemaker, 2 years now. he was put on sotolol after he had his pacemaker. hes doing well thank God. i hope this helps.

[Midge Rollins]

Re: Starting Sotolol

Pam, I took Sotolol for several years. I really had no problem with it. I do think it helped keep me from worsening for a while. I too was hospitalized while they monitored the dose and the afib. good luck. It will work great.

[Pam Alexson]

Re: Starting Sotolol

Thank you , thank you.. One question more at this time and I know Dr. M will be the official word but,

Do they lower your beta blocker when you start? Just a reminder... I take 100mgs of Atenolol 2 times a day and Diltiazem 360 mgs in am and 180 mgs in pm. I am "overly" beta blocked on purpose( for chest pian control) for the microvascular syndrome component of my HCM.

AND Shelly...I did not know that they can start you on Sotolol without hospitalization! Has anyone got more insight knowledge about this? I would seriously question my doc thoroughly on this. Do you have a defibrillator, actually an AICD?

Pam

[Largehearted]

Re: Starting Sotolol

Pam.

I was on Atenalol and the pulled me cold turkey. I asked them about it, but since they were already starting Sotolol they did not seemed to be worried about it. I was not very happy about that, but it may have had to do with the fact that I already had my ICD too.

Leon

[Janet]

Re: Starting Sotolol

Hello Pam,

I started sotalol nearly two years ago and was not hospitalized by my EP because just days before I was in the ER as my ICD gave me an appropriate shock. He would have put me in otherwise. I am only on 80MG (previously stated incorrectly 90mg on another post) twice a day which my EP states is a very low dose. Between the myectomy, maze, cardiac ablation, ICD pacing my LV and the light dose of sotalol, things are working well.

Yes, I have those lovely nightmares, BP between 90/50 and 100/60, pulse at 60 and a bad case of no energy. One thing sotalol doesn't help me do is lose the 25 pounds I have gained on my big butt since all this started in 2002.

I hope the sotalol works great for you. Be well, Janet

[Shelly]

Re: Starting Sotolol

Pam,

I had and AICD put in Oct 2006. My ICD started beeping at me almost 6 months to the day of being implanted. I went to my EP on Thurs in April and they looked at my device and determined that it was noticing irregular beats, but did not need to due anything. The gentleman from Medtronic hadn't ever had that happen before. However, that night I had a syncope episode and have had another one since. I was wondering if anyone else has had their ICD beep at them. I didn't realize the noise was coming from me until after the 6 th time I heard it. I had my husband (who didn't hear the noise) go all over the house with me to find the noise lol. I had made a complete circle and was at a window before I had my husband lean in and determine the noise was coming from me.

I did talk to Lisa about the sotalol before I filled it. She said you didn't necessarily need to be hospitalized. I had noticed so many others on this board had stated they were in the hospital to start it, so I was a little nervous. It is so great to be able to talk to others about HCM problems. Thanks to you all!

Blessings!

Shelly

[Laura]

Re: Starting Sotolol

My ICD started beeping while i was in the fabric store. Scarred me.
My Batteries were red lining. The second procedure was easier than the first
one. That was a bad experiance.

Good Luck
Laura

[Pam Alexson]

Re: Starting Sotalol

I had my Sotalol load and all went well. Feeling a little dizzy at times and head fog, headachey at times but I am sure it will lift as I get used to it. They took my Atenolol down by 1/2 to 100mgs per day. Left my Diltiazem at 360mgs in AM and 180 mgs in PM. Added Sotalol 80 mgs twice per day and have me on Lasix alternating 20mgs and 40 mgs.

Now... I specifically asked about SOTALOL initiation and no hospital monitoring... This is what I was told:

ABSOLUTELY NOT EVER. This was repeated by several individuals. I do not wish to cause anxiety but you know I see one of the top dogs here on HCM.. When I questioned further I was told:

WE are aware that SOME clinicians do give it out in prescription with out hospital monitoring BUT.. and a very BIG CONCERN for anyone... IT is referred to as AGAINST PRACTICE.

Now the explanation though complex is well documented and warranted for patient safety. The QT interval has to be carefully monitored and kept <520 msec. If the QT interval were to rise above this timed interval, A LETHAL arrythmia "Ventricular tachycardia called Tosades de Pontes," could result. I was told that my defibrillator will protect me but that they just don't jack one up on this class 3 anti-arrythmia med without carefull cardiac monitoring. AND at some time in the future if my dose has to go up it will require additional monitoring for a few days to keep it all safe.

Now I know this will cause a stir but it should, I am very concerned that a doctor would add this med without a short hospitalization for safe cardiac monitoring. In the literature.. they gave me the medical personnel( because I am an RN) and patient advisory information packet. In the medical personnel info it says SOME clinicians will start Sotalol therapy as outpatient basis in a patient without heart disease or bradycardia including specifics to quantitate this choice. BUT CAREFUL EKG monitoring is a must.
I believe having HCM is having heart disease and therefore .. end of discussion.

There was a Rhythm Society Conference in Denver Co. this past weekend so perhaps updated info will come to us via Lisa soon.

PLease question things such as this when you read the literature.

Pam