Newly diagnosed - Hydroxychloroquine question

[EG74]

Hi all, new here in this site. I'm also newly diagnosed with lupus. I have a question regarding the medication that I have to start taking (hydroxychloroquine). I have low pulse or bradycardia, resting time usually in their 50s but during sleeping reaches 43-45 few times during the night, sometimes even reaches to 37-39. Could this medication make my heart rate to fall even more? I'm just worried about sleeping times. I'm not overweight but I have since teenage times apnea during sleeping. Many thanks for any reply.

[Spanielmadlady]

Welcome.i have heart issues and still take hydroxy.i think though this is something you should ask your Rheumatologist about. I recently rang my Rheumatologists secretary after the MHRA released a safety update about hydroxy ,azithromycin and heart issues. I got advice and reassurance from my consultant 2 days later by phone.Don't forget your eye tests ....they are a must before you start taking it and every year.specsavers do the OCT test . X

[EG74 in reply to Spanielmadlady]

Thank you Spanielmadlady. I just made appointment with my optician for next Thursday. I’m waiting for my rheumatologist to call me back regarding my bradycardia question. When I had my appointment with my rheumatologist in Edinburgh, I think I told her I have bradycardia but when the nurse took my blood pressure and pulse was normal so I guess they didn’t take into account I said I have bradycardia (I usually check my heart rate with one of those Apple watches)

[Spanielmadlady in reply to EG74]

Pleased you are getting a call back and have sorted your eye test ...i sometimes think you have to keep asking as they don't always take everything in .Hope the hydroxy helps you.it takes several weeks to start to work so be patient.xx

[svfarmer]

Hi EG74 just wanted to welcome you to the site, we’re a very friendly bunch so don’t be afraid to ask any questions you need answering as there will always be someone who can help xx

[RosieA]

It is all so tricky isn't it but am glad that you have the ball rolling in getting some advice. Can I ask how you know your resting heart beat at night - do you have devise such as a Fitbit etc? Am only interested as before going on steroids recently (my disease is active) my resting heart rate was in decline at 53 (I felt dreadful and had to drag myself around the house to try and raise it) and at times I can feel a strange heart rhythm. Am thinking of investing in one of the new Fitbits to try and put my mind at rest (hopefully!) x

[EG74 in reply to RosieA]

Hi Rosie, I always had problems with fatigue and when I was travelling my friend had this Apple Watch and check my heart and it was since then I knew my heart rate was slow. He gave me his mum’s old iPhone and I sleep since then with the watch so it measures your heart rate meanwhile you sleep and it gives me warnings when it goes below 45. You can also check your ECG but not during sleeping as you need to put your finger in the side of the watch. It’s really good, it can check your pulse 24 hours.

[RosieA]

Ah, thank you for this. Might be worth the investment.

[StriatedCaracara]

I have just started HCQ. Rheumy asked me about my heart when he prescribed.I think it is important to tell the Rheumy everything you know about your heart and how heart rate can vary.

If someone does an ECGthey can look for long QT in different lying positions. I think if lie down and move from right side to left side, get up, lie down again ECG can sometimes change too. There is a tilt table test - sorry though I don't know much about this.

Maybe mention to GP and see if you can use a heart monitor for a few days whilst on HCQ.

[EG74 in reply to StriatedCaracara]

Thank you StriatedCaracara. I had an ECG done for less than 5 minutes last year on December and all was normal. I’ll request to get monitor for 24-48 as it’s when I sleep that my heart rate is very low. Thanks for your answer.

[Tiras]

As for me, I have been taking Hydroxychloroquine for about 10 years. I have not had any bad side effects.

[MusicalFurbaby]

Hi EG74, I am not medically trained but my rheumy tells me hydroxy is generally very well tolerated by most people with minimal side effects. I have not noticed any side effects with the hydroxy I am on (400mg daily). I also experience heart issues but the opposite to you, I have episodic tachycardia, and I don’t think the hydroxy has affected that at all. But I’ve also only been on hydroxy full dose for about 3 months. So feel free to take my comments with a grain of salt. As always, when in doubt, ask your doctor/specialist!

[EG74 in reply to MusicalFurbaby]

Thank you 🙏

[WinterSwimmer]

I have bradycardia with a resting heart rate in the 50s and dropping below during the night. Been taking Hydroxychloroquine (400mg) for more than 10 years.

[EG74 in reply to WinterSwimmer]

Thank you WinterSwimmer, this sounds reassuring. I’ll start taking HCQ from tonight as my optician just checked my eyes and are ok. In six weeks time I have a call from my rheumatologist to see how I respond to the medication. Thank you all for your comments. Erika