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summer

Heart Problems

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I haven't posted for some time, I have been diagnosed with Limited/Crest Scleroderma since 2007. I have no skin issues as yet, but have lots of things internally. I am currently seeing a Cardiologist as I have Tachycardia (fast heart rate), and most recently have been suffering with palpitations several times a day and fluttering and/or skipped heart beats. I have had a holter monitor last week, and also blood tests. I won't know what the results are for a week or so.

 

Could someone please tell me, whether Scleroderma can cause palpitations or arrythmias, or is this a separate issue?

 

And, for the people on this forum who are also experiencing this, can you please tell, what your treatment plan is?

 

Kind regards

Summer :thank-you:

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Hi Summer,

 

You are asking about irregular heart beats and such, and whether Sclero can cause them. Well, since I am not medically trained I can't say one way or the other, but I do suffer from an irregular heart beat.

 

Sometimes it is worse than other times, but the main opinion is that it is not dangerous unless it becomes atrial. That is irregular contractions of the Atria as opposed to the Ventricles. I have what they call level one heart block which sounds scary but isn't necessarily until it gets to level 3 or 4 as far as I know.

 

Ventricular extra systoles is what they call the ones I have and my 'treatment plan' as you call it is not very complicated. I have been told to avoid all stimulants in food - i.e. caffeine and alcohol. I drink decaffeinated coffee and only real coffee, NO INSTANT stuff! I avoid chocolate, except that very occasionally I will sneak a bit if nobody is looking! I haven't had a glass of wine for maybe 30 years and no spirits for the past 5 years at least. In spite of all this abstinence the irregularities continued to worsen and now I am on 240mg of diltiazem daily. Diltiazem is a calcium channel blocker and does make a difference, but at the same time it will also reduce blood pressure (BP) so it won't suit people with low blood pressure. One of the effects of Sclero for me is raised BP so this medication just takes the place of part of one of the other drugs I was on previously.

 

Although I do believe that it is not dangerous per se, it is still very unsettling and exhausting to feel all this hiccuping and fluttering going on all day and night, so I am happy to forgo the wine and chocolates and take my pills regularly just for a peaceful life.

 

I hope this helps and that you can make life more peaceful for yourself.

 

Warm hugs from NZ,

 

Judy T

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Hi Judyt,

 

I have Ventricular extra systoles (VES) and nobody pays attention to that. All doctors say its nothing, and that it would be more serious if more VES were connected one after another. I feel more of these in the time when hazel, birch or ragweed pollen is in the air (allergy). I do not take any medicine for that.

 

Regards,

 

Erika

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Hi Summer,

 

I'm sorry you are experiencing some heart issues. You may want to read our section on Cardiac (Heart) Involvement in Systemic Sclerosis on our main site.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Summer

 

I have heart involvement and have just had the holter monitor test the results of which were a waste of time, the recommendation was to have a 12 lead ECG...because of what the ECG showed I had the holter test! Will be discussing further this month when I see the rheumatologist.

 

I have had palpitations and fast heart beat on and off for some time and assume it's because of the bundle branch block and/or diastolic dysfunction (both caused by sclero) but again will discuss further when I see the rheumatologist because I don't know for sure.

 

When I find out anymore I'll let you know.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Summer,

 

I'm sorry that you have been diagnosed with tachycardia. Being as I am not a doctor, I can't personally say that sclero can cause heart problems, but both my rheumatologists and cardiologists attribute my heart problems to sclero. Also, Maureen Mayes book The Scleroderma Book has a short section on scleroderma and heart involvement. In fact, it was her book that allowed me to recognize my symptoms in January of 2005 as complete heart block. Three doctors couldn't figure out what was going on and after reading her book, I went back to my rheumatologist and asked for an EKG. He sent me downstairs to the cardiologist and the next day I was getting a pacemaker. About a year later I developed atrial fibrillations which have since become chronic. I take an anti-arrhythmia drug (propafenone) to help with that and it does help. I also have to take coumadin (anti-coagulant) to keep clots from forming in the right atrium.

 

As you can see my cardiac involvement is quite extensive but since things were caught early, we do have it under control and it doesn't prevent me from exercising, traveling, or having a nice life. Since they have identified your tachycardia early, you are in a good position to keep it from becoming serious. Please have a good discussion with you cardiologist on lifestyle and medication. Let us know what you find out because that will help us all. Look forward to hearing what you learn.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thank you all for sharing your advice, it is great to be able to come to a place, with like minded people :emoticons-yes: .

 

I have finally reached a decision about what blood pressure monitor, that I will buy. I will go and get it today. I am also, waiting for a call from my Cardiologist, from the results from my blood work and holter monitor.

 

Janey, if you don't mind me asking, did you start off with tachycardia at first, with your heart problems?.

 

Thank you all

 

Summer :thank-you:

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Summer,

No - I skipped over all heart complications and went straight to complete heart block. :blink: But then again,it's hard to say what was going on before because we hadn't tested the heart in any way so something could have been going on and we didn't know it. It was 1.5 years after diagnosis and we were concentrating on getting the diseases (sclero and poly) under control.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks Janey,

 

I finally got the blood pressure (BP) monitor, mine can detect arrythmias. I have just done a few BP readings, when I have been relaxed. It keeps coming up that I do have arrythmias. The blood pressure is normal though.

 

I am still waiting for my cardiologist to ring me for the results of all my tests I had done. Hopefully I will know soon.

 

Take care

Summer

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Well, my Cardiologist finally called me. He couldn't see anything was wrong with my heart, with me having the holter monitor test.

And, doesn't seem to fussed with me having arrythmias. See him in 6 months, only to get more meds for my Tachycardia.

 

Take care

Summer

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