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mando621

Possible cardiac effect from taking hydroxychloroquine

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Hi,

 

I have been dealing with UCTD for 13 years now. I have been on hydroxychloroquine since 2011. I have arrhythmia pretty much all the time. It began to get worse a few months ago and my blood pressure has been slightly elevated for me, still in the ok range.

 

I went to my primary care doctor and they did an EKG. Found a delay in my left ventricle and now schedule for ECHO.

 

I wrote to my rheumatologist to let him know, figured he should know about this. He wrote back to discontinue they hydroxychloroquine because it has rare instances of cardiac side effects. He said to let him know when the ECHO is done so he can look it up, they don't automatically send him the info.

 

I looked up cardiac involvement with hydroxychloroquine and it is scary. Has anyone else ever had issues like this?

 

Mando

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Hi Mando,

 

This is very interesting to me. I've been on hydroxychloroquine since 1999. I have often had irregular heart rate, mostly tachycardia, which has lead to numerous cardiac work ups, but everything ends up being normal. I think I'll do further research on this. Please let us know what your ECHO shows and if your rheumatologist decides to keep you off the meds. 

 

I went off them once and within days could not function, I was in so much pain etc. Please let us know how you are getting along.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Mando,

 

I'm very sorry to hear that you're experiencing cardiac problems with hydroxychloroquine.

 

I've never taken hydroxychloroquine, so thankfully, have no personal experience of the trouble you're describing.

 

Please do let us know the results of your ECHO and also what your rheumatologist advises.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Mando,

 

I'm sorry that you are having heart problems, and that they might be caused by plaquenil.  Have you received any results yet?

 

:hug-group:


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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Hey Mando, this is the first time I have heard of cardiotoxicity from hydroxycloroquine and you're right, the articles are scarey...sudden death, biventricular cardiomyopathy...oh my!

 

Of course it's serious, I get that. For different reasons, I had my own stomach dropping moment back in 2010 when the damage had been done by the time it was found and I was looking at 2yrs without successful treatment.

 

Where you are now is all uncertainty and fear but you're doing what you can for yourself by ensuring your medical team is on the ball. Until the ECHO results you won't know where you stand or what your options really are.

 

When I researched my ailment, myocardial fibrosis, one site talked treatment and another shouted it's TERMINAL! That was 6 years ago...

 

Let us know what happens as we're all rooting for you.

 

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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Well, finally results from the ECHO. My injection fraction is down. And I have the common malformation of a hole between the chambers. So I've been referred to a cardiologist for a second opinion and possible treatment. It has been stressful waiting for the results.

I'm having a ton more fatigue than normal it seems. Don't know if that is because of this issue or stopping the plaquenil. I haven't heard from the rheumotologist yet so I don't know what his take on this will be, but I'm sure he would agree seeing the cardiologist is good.

Thanks for the support.

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Hi Mando,

 

Sorry to hear that you have developed cardiac problems, but at least you have been referred to a cardiologist, so hopefully they can decide on the best treatment for you.

 

Please keep us updated with the results of the appointments with the rheumatologist and cardiologist when you have them.

 

Best wishes,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Mando,

 

I sometimes find it hard to figure out what is causing increasing fatigue. Sometimes it is due to going off a medication that reduced fatigue, or then to issues surrounding why the medication had to be stopped, or to other yet unidentified issues.

 

For myself, I always assume that if there is any stress around, that it will worsen any/every symptom and especially fatigue. So I try to tackle stress in every way I can, which always pays its own benefits. I simply pull out all the stops for things that make me feel happy or relaxed or refreshed. Health stresses and worries can hijack our brain in a split second, and disrupt our sleep and relaxation very quickly, even when we are otherwise quite resilient.

 

Developing and expanding your resilience will be your best ally right now. That, and seeing a cardiologist who can give you some straight answers and reliable guidance, going forward. Keep us posted on how things progress. We are always here for you!

 

:hug-group:


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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Hi Mando,

 

Truly sorry to hear of your cardiac problems, but really happy you are following up on it! Will be patiently waiting for more info. :)

 

Shelley, you are always such an inspiration to me and others. Great advice my dear friend. xo


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Mando,

You say your Echo has identified a septal defect.   I don't know much about these things but I always thought a septal defect (hole in the heart) was more or less there from birth, maybe not.   Anyway quite early on in my Sclero diagnosed journey an Echo identified a Mitral Valve Stenosis which I was assured was a result of childhood Rheumatic Fever.

 

As the years went by my fatigue and breathlessness increased and poor lung function was ruled out in favour of the effects of the Mitral Valve incompetence.   Had minor surgery to try to relieve it in 2010 but then in 2015 it was decided to do open heart surgery and deal with the valve properly.  Of course that episode was not the simple 4 day event that is expected for most people.   I managed to contract aspirated pneumonia, probably when they had me flat on my back in ICU the first day, and I ended up being there in hospital nearly 3 weeks.   However in spite of that set back I am hugely better than I was and am thankful I got the opportunity to have that surgery.

 

You may find a similar path appears for you and from my experience I would suggest that it could make all the difference to you.

 

Best wishes

Judyt

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Saw cardiologist today. He said I have  Left Branch Bundle block (LBBB). I am going to be adding an ACE inhibitor to a Beta Blocker, daily aspirin to prevent clots. I'm wearing a Holter monitor. I have PVC's as well as LBBB atypical. 

 

Reading up on conductivity issues, it looks like this could be the result of my autoimmune issues. The cardiologist didn't think it was of major significance and didn't want to speculate as to cause. He was focused on treatment. 

 

My ejection fraction is 50% which is just slightly low. 

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It is hard talking to the doctor and hearing heart failure. When I called to find out what the Rheumatologist might have to say now that the cardiologist has seen me, the nurse kept saying "heart failure".

 

I want to know what caused this, is it going to get worse? Lots more questions flooding my mind. I've been depressed for quite a while, other things in work and marriage. This isn't really helping my state of mind.

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Hi Mando,

 

I'm very sorry to hear of your complications with scleroderma heart involvement.  You can read lots more about it at that link. As you'll see, left ventricular diastolic dysfunction is highly prevalent in scleroderma. Heart problems are often one of the first symptoms of scleroderma, and nearly everyone with systemic scleroderma develops some heart issues, whether minor or manageable or major.

 

You might also be interested in our Patient and Caregiver Stories about heart involvement. You might also take heart from Janey Willis' ISN Profile Page. Janey went through all of that, and was then able to return to work full time!  She is nearing full retirement now and is planning on rejoining us all here at the ISN. Oh happy day! 

 

It sounds like you now have an accurate assessment of the involvement, and that will lead to treatments and learning how to deal with this in your daily life. Keep in mind that all illnesses can seem even worse, or more depressing, over the holidays. But the inflammation that accompanies illness can also affect the brain and either contribute to or cause depression, which of course, as I'm sure you've noticed, can trash the quality of life far more than scleroderma!

 

So please, take especially good care of yourself. Make a point of pampering yourself a bit every day. Chronic illness is very hard on our loved ones, too, so it helps for everyone to seek all the counseling and support they can.

 

May you hold a candle of hope in your heart this holiday season. Scleroderma is a roller coaster, and when we are are the down side of it, it means that we will soon be heading up again. So hold on tight for the ride! 

 

And remember, we are always here for you.

 

:hug-group:


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 Mando

 

I had LVBBB too...do I still have one...I dunno! Anyways, you're right it can be caused by connective tissue issues.

 

I began with LVBBB in 2009, at that time my ejection fraction was 50%. Come 2010 and I also had myocardial fibrosis, ejection fraction of 32%, global disfunction (both sides of the heart affected) and serious heart failure with a 2 year life expectancy.

 

Well lookit that...it's 2017! I had a bi ventricular ICD implanted and here I am today.

 

I did the heart monitor and it was a waste of time for me, the right & left heart catheterisation and heart MRI were the diagnostic tests that did the trick, having a said that things had gone way beyond the LVBBB.

 

If you're being investigated they will hopefully find the problem quickly and be able to treat it quickly. I know that when the heart is affected it can be quite daunting.

 

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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Hi Mando 

 

Sorry to hear of your heart issues which sound very scary but you sound to be well looked after by your medical team and hopefully they'll come up with a treatment package for you.

 

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