Author Topic: Plaquinil causing Heart issues?  (Read 1035 times)

Supergranny

  • Newbie
  • *
  • Posts: 44
Plaquinil causing Heart issues?
« on: May 23, 2020, 10:55:47 AM »
I?ve been on plaquinil for 24 years and it has helped me a lot. However, I was never told once about it possibly causing severe heart issues or even death as I?ve now been hearing constantly on the news since they started looking at plaquinil to be a possible drug to fight covid19. At first I just ignored it, thinking they are just exaggerating about the dangers of this drug. But these dire reports are now everywhere I look so now I?m getting worried.

When I was first put on plaquinil back in 1996 at the age of 41, I was only told by my rheumatologist about the slight risk of possible blindness and how to stay on top of that so it doesn?t happen. 

Through my life I?ve dealt with painless heart palpitations. So I did have them even before being put on plaquinil but they were pretty mild and few and far between. But since being on Plaquinil they were much more persistent and noticeable. They would range from just being a mild annoyance to being unnerving enough for me to go to see my doctor.  Every time I?d go see my doctor the palpitations would of course not be present. But then finally at one visit in 2003 my doctor detected them and also checked my thyroid. My numbers were high so she sent me to an endocrinologist and also put me on atenolol to help with the palpitations. During these many visits she never mentioned that plaquinil was dangerous for the heart.

The endocrinologist diagnosed me with graves and said the heart palpitations were probably from my over active thyroid. Nothing about the plaquinil. So after he treated me and my thyroid was functioning normal again, I still had occasional mild heart palpitations. So I was told to just stay on atenolol. 

More years of this went by then in 2015 at age 60 my heart palpitations were almost constant and at times it felt like my heart was flip flopping all over my chest. But every time I went to the doctor for this, the palpitations would not be happening. But just to make sure my heart was okay she sent me to a heart clinic where they did a stress test after injecting dye and looked at my heart. Tests showed nothing wrong. Then they followed that up by having me wear a 30 day heart monitor. But of course during that 30 days I only felt a few mild heart palpitations when previously they had been continuous.   And the heart monitor only picked up a couple. So of course they said my heart was fine. And once again, not a word to me that plaquinil is dangerous and can cause heart problems.

I still have these heart palpitations. Usually only at night when I lay down. My doctor told me that?s probably my heart going out of rhythm when I lay down too quickly and is trying to regulate again. So I was told to lay down in bed at night in stages and not just quickly lay down as to prevent this from happening. It sometimes works.

So anyways, during these past 24 years of being on plaquinil and seeing several different family doctors, my rheumatologist, an endocrinologist and a heart specialist, not one word did I ever hear about plaquinil perhaps being the cause because it can cause severe heart issues.  If plaquinil is as dangerous as they are saying on the news, I?m thinking I want to stop taking it.

If anyone has any thoughts on this issue, I?d love to hear them.

Thanks!
Diane
65-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd, IBS, neuropathy
Meds-200mg plaquinil, Prilosec, Biotin, atenolol, Gabapentin, magnesium
Gluten and dairy sensitivity.

Deb 27

  • Hero Member
  • *****
  • Posts: 795
Re: Plaquinil causing Heart issues?
« Reply #1 on: May 23, 2020, 02:46:13 PM »
Supergranny, I never heard or read about it causing heart problems either. Maybe others with more experience will chime in here. All they warned me about was potential but rare retina damage.

I think Graves disease could certainly cause heart palpitations. Do you have A fib??? Might be time to talk to your doctor to see if the plaquenil has anything to do with it.  I hope you get some answers from your provider. It can't be fun to have your heart pounding. DO they have the Graves under control??
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Supergranny

  • Newbie
  • *
  • Posts: 44
Re: Plaquinil causing Heart issues?
« Reply #2 on: May 23, 2020, 03:01:18 PM »
Hi deb, thanks for responding. Yes my graves is under control. They always check my tsh numbers when I go in and they are always normal. After all the doctors I?ve seen about my heart palpitations I?ve never been diagnosed with A fib. But I should check that out.
And yea, like I said, I?ve never heard about any heart issues from using plaquinil from any doctor I?ve seen, or even on this site. I?ve only recently heard about all the negative heart issues now in the news since their thinking of using it for covid19. And my family and friends are hearing it too on the news and are worrying about me being on it So I was just wondering if this has been common knowledge all along and I was just in the dark about it.
So I thought I?d ask here to see what you guys thought because I don?t really trust everything I hear on the news.

« Last Edit: May 23, 2020, 03:17:44 PM by Supergranny »
65-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd, IBS, neuropathy
Meds-200mg plaquinil, Prilosec, Biotin, atenolol, Gabapentin, magnesium
Gluten and dairy sensitivity.

felpeyu2

  • Newbie
  • *
  • Posts: 27
Re: Plaquinil causing Heart issues?
« Reply #3 on: May 23, 2020, 11:13:38 PM »
Hi, I have been taken hydroxychloroquine for several years and I have read about this heart issue too. I think the dose is very important, I suspect that this problem with the heart is with high doses of hydroxychloroquine and not with the regular doses that we take for Sjogren, but i do not know for sure.

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 5131
Re: Plaquinil causing Heart issues?
« Reply #4 on: May 24, 2020, 04:51:51 AM »
There are so many factors in play here. Plaquenil has always had the potential to produce heart rate changes and "fluttering" at toxic levels, (the warning on the information handout states if any of these occur as new onset after starting the medication, inform your ordering doctor), and the level of toxicity varies from person to person. Generally speaking , the maximum daily dose for rheumatological diseases is 400 MG, which falls very short of potential toxic dosage.

Many of the deaths attributed recently to Plaquenil seem to involve people with very severe cases of COVID 19, and the doses being given, with no established double-blind, science based proof of positive effect, aren't regulated and can be very high.

There is also a concern of taking it prophetically with unregulated dosing, and in that way reaching people who haven't been properly screened for possible allergy or sensitivity based on previous reaction to cross allergens.

Please don't demonize Plaquenil, based on news headlines. Like any medication, it can have adverse effects, sometimes very serious ones, but I'd hate to see the same thing happen that occurred years ago with NSAIDS, and have it taken off the market. Yes, NSAIDS can contribute to heart failure, but to deny the relief they afforded to millions of people suffering from pain because thousands experienced side effects, in my opinion, wasn't necessary. Monitoring and discontinuing the drug in susceptible people could have helped.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Supergranny

  • Newbie
  • *
  • Posts: 44
Re: Plaquinil causing Heart issues?
« Reply #5 on: May 24, 2020, 10:15:41 AM »
Thanks Felpeyu2 & Linda for all the information! It?s given me a sense of relief. :) I?m on a pretty low dose. 200mg a day.  I?ve done well on plaquinil for 24 years and will continue to take it.

Thanks!
Diane
65-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd, IBS, neuropathy
Meds-200mg plaquinil, Prilosec, Biotin, atenolol, Gabapentin, magnesium
Gluten and dairy sensitivity.

Kathy57

  • Hero Member
  • *****
  • Posts: 737
  • Primum non nocere - "First do no Harm"
Re: Plaquinil causing Heart issues?
« Reply #6 on: May 25, 2020, 02:38:22 PM »
Super granny,

I believe Blue Gardenia in Italy had such bad heart palpitations that she could not take Plaquinil.
I remember reading her story.  Not sure how prevalent this is.  I would speak to your Dr. about it.

Good luck,

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Deb 27

  • Hero Member
  • *****
  • Posts: 795
Re: Plaquinil causing Heart issues?
« Reply #7 on: May 25, 2020, 08:18:10 PM »
https://www.news4jax.com/news/2019/11/11/watch-live-news4jax-broadcast/

This was on our local news. It featured a lady with Sjogrens and some difficulties she's having getting her usual supply of plaquenil.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Supergranny

  • Newbie
  • *
  • Posts: 44
Re: Plaquinil causing Heart issues?
« Reply #8 on: May 25, 2020, 11:13:26 PM »
Thanks Kathy for that information. I definitely will be talking to my dr at my up coming physical in July.

Diane
65-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd, IBS, neuropathy
Meds-200mg plaquinil, Prilosec, Biotin, atenolol, Gabapentin, magnesium
Gluten and dairy sensitivity.

Confused

  • Full Member
  • ***
  • Posts: 145
Re: Plaquinil causing Heart issues?
« Reply #9 on: May 26, 2020, 07:14:11 PM »
Actually I was glad to see the doctors take on plaquinil.  Not that I think it should be taken or shouldn't be.  That should be between your and your doc.
However, I am a do not take this medication and tend to try to stay clear of the question as I find I will be slammed as so and so thinks I should take it.
What I really would like to see is more accurate information on all the medications people are given and if there is a problem what do you look for.  I have been told 5 years is the max for plaquenil. 
I literally had a reaction to a med in a doctors office and the tech witnessed it and the lovely side effects and the doc I saw was going to send me out for major testing.  I was fairly sure this was a drug reaction and so lucky the tech had had the same med with the same reaction so I was able to talk the doc into letting me wait a week but was scheduled back in and so of course when I quit the med the problems disappeared.  The rather sad thing was when I told the doc (different one) about the med he said that med couldn't do that because it didn't say so in some book he had on side effects.  This doc should have known.  Of course as the drug became more used the side effects, including mine, showed along with a ton more.  You need to research and sometimes coming off a drug long term has to be done carefully.  You need a smart doc you can trust and of course a second opinion is always good as is becoming friends with a pharmacist.
If there is an accurate book out it would be nice to know what it is.  Another drug can sometimes cause trouble because the two should not be taken together. 
I am getting to old for trying to figure out things!



 

Deb 27

  • Hero Member
  • *****
  • Posts: 795
Re: Plaquinil causing Heart issues?
« Reply #10 on: June 01, 2020, 07:38:59 AM »
Well, another issue with the plaquenil is that it is frequently used with the Z pack antibiotic, so that seems to muddy the picture a bit, if you ask me.  Is the reaction from the plaquenil or the Z pack or the combination of all the meds that the patient is on. I just hope they come up with a better medication for the COVID 19 and a vaccine. Everybody, be safe!!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Supergranny

  • Newbie
  • *
  • Posts: 44
Re: Plaquinil causing Heart issues?
« Reply #11 on: June 02, 2020, 12:01:20 AM »
Thanks deb and confused for all your input on plaquinil. It?s all been very helpful for me.  :)
65-Female-Primary Sjogrens-DX-1996, sleep apnea, Raynauds, Gerd, IBS, neuropathy
Meds-200mg plaquinil, Prilosec, Biotin, atenolol, Gabapentin, magnesium
Gluten and dairy sensitivity.

Peanutbrain

  • Newbie
  • *
  • Posts: 6
Re: Plaquinil causing Heart issues?
« Reply #12 on: July 10, 2020, 09:00:42 AM »
I'm sorry you're experiencing this and can imagine it's frustrating to not be able to capture it. I don't take plaquinil (had an allergic reaction-trunk rash-so had to go off it right away) but have had a bad reaction to a medication that started bouts of heart fluttering (ironically, it was mini birth control pills that I'd been able to take without problem when I was younger).  Anyway, I do have a recommendation. If you can afford it, smart watches (the apple watch, anyway), has an ability to make simple ECG recordings with an irregular rhythm notification. I'm a datanut so I love the ability to have in continuously monitoring my heartrate (I have dysautonomia, better and worse depending on life) that I can match with symptoms; and I get high and low notifications (mostly when I'm asleep, which is concerning but not relevant here). Same with the ECG. You'd be able to simply open up the app and hold the button for 30 seconds whenever you feel like you're experiencing an abnormal episode, and then you'd have it recorded. It downloads to my phone so that I can show it to my doctor.  Best wishes!

meirish

  • Jr. Member
  • **
  • Posts: 84
Re: Plaquinil causing Heart issues?
« Reply #13 on: July 11, 2020, 12:33:39 AM »
There were 2 doctors on TV this morning discussing the hydroxy issue. They were upset. One doc has been using this drug for 30 years on hundreds of patients and has never had any issues. The other doctor related how  the association Dr. Faucey (sp) seems to be associated with (along with other drs involved in blacklisting the hydroxy) has started causing trouble for docs prescribing this drug for their patients. The sort of trouble is like involving maintaining their medical license and other legal issues. It has gotten quite bad and these 2 docs have started an organization to push back on these issues. I still don't understand the whole thing!!!

The one doc with many patients on it said that this drug has a really good safety record and in the 60-70 years it has been on the market has only had 50 deaths attributed to it. Now this sounds terrible but when one sees the very high doses used to treat malaria in relation to the very long doses treating autoimmune and the covids one can see that malaria treatment is probably a more problematic issue.

There are so many issues stirring the pot lately and the people of America must surely get sick of all the drama. Just more info. meirish

Peanutbrain

  • Newbie
  • *
  • Posts: 6
Re: Plaquinil causing Heart issues?
« Reply #14 on: July 11, 2020, 06:29:48 AM »
The one doc with many patients on it said that this drug has a really good safety record and in the 60-70 years it has been on the market has only had 50 deaths attributed to it. Now this sounds terrible but when one sees the very high doses used to treat malaria in relation to the very long doses treating autoimmune and the covids one can see that malaria treatment is probably a more problematic issue.

It's possible to do your own research on this (but maybe that's easy to say as I have a PhD in a medical science field). I think what may be so surprising to people is that it hasn't been mentioned before and yet cardiologists seem to have known about this for a while and that's where I've gotten most of my current understanding from. I think it is strange, from a Sjogrens' patient's point of view, that I was made to get an eye exam from an ophthalmologist before going on plaquenil but I was never told about getting an exam by a cardiologist beforehand and yet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760572/ (but I my have been put on plaquenil before 2013). It's better to be aware and make your own decision so it's good to know now, don't you think? Another thing to consider, as mentioned above, is dosing.  You might find this page helpful, to compare dosing for different conditions:  https://reference.medscape.com/drug/plaquenil-hydroxychloroquine-sulfate-343205  It comes down to personal health vulnerability, dosing, and risk/benefit ratio, which is true for most medications.