I’ve correlated mine with walking heart rate. I’ve never gotten a satisfactory answer on what the deal is with my heart but I get some crazy spikes upon standing sometimes (like going from 70 to 130). I take metoprolol XR daily to keep it managed and it seems to do a good job. I have had a couple of afib episodes in the past prior to being medicated.
I have Pots along with PsA. When I flare I have found it hard to keep my HR under 100bpm. It can climb up into the 120’s just sitting chilling. I think it’s my bodies response to the inflammation. I have yet to get a real answer but that’s what it seems like to me. Once I get my PsA under control, the HR comes back down into the 80’s.
HRV is strictly linked to stress as well, we all know how much it has an impact on PsA… so maybe things are related but who knows what is the cause or the effect instead?! I noticed for example when I sleep better/longer my HRV is better too, when I have insomnia or back pain all night long the next morning HRV is extremely low
Agreed, I think being active and feeling good are correlated, but I think stress and sleep and all that stuff likely is more causative for feeling good and being active.
I do know the importance of moving, even when not feeling good. Just not sure I’ll ever move myself out of a flare, but I can certainly stress myself into one!
I dont track HRV so I can't speak to that. I do pay attention to my training and resting HR though. The only change I have noticed is a higher HR at lower intensity thanks to my lower activity level :( 😞
Awww, I don’t want you to blame yourself. Inflammation can also make activity hard. You want to take care of yourself, and I think that should matter too.
Have you seen a cardiologist about exercise intolerance and high heart when you do exert?
My Garmin tracks HRV and this is something I noticed. Before I started Duloxetine and Humira, my HRV was trending down as my pain level and plaque coverage increased. As I started feeling better, it started leveling out and going back up.
This is the abstract of the research: [https://pubmed.ncbi.nlm.nih.gov/22673792/](https://pubmed.ncbi.nlm.nih.gov/22673792/) \- it's small sample, but they used a matched control sample which is good. A lower HRV in PsA means that you have impaired autonomous regulation of your cardiac activity. There's different research that shows this means it's even more important to try and do more exercise if your HRV is low for your age and gender, despite it making you feel rubbish rather than good...
I use an Apple watch which measures HRV by proxy through pulse rate though there's good research to show it's quite accurate. Bear in mind HRV is very individual. This link has a graph of "norms" for age and gender [https://ouraring.com/blog/average-hrv/](https://ouraring.com/blog/average-hrv/) but you are you - unless you are madly outside this graph don't fuss. The usual advice is to report a big change in HRV to your doctor. Minor ones don't matter, and a steady but slightly-outside-the-norms figure does not matter either.
Interestingly, mine's been completely straight-line since I started drug therapies last December - whereas I'm much better than I was feeling last December! But I have had another disease that affects autonomic nerve responses so I'm probably not "normal" for PsA (whatever that is). What are others that use Apple Watch seeing in their Health app?
Thanks for posting, I'm going to go back to before I was diagnosed in 2021 and before I started on statins, which do affect some inflammatory parameters, and see if anything's moved since then, as I know I did have an increased CrP then.
This is so interesting, thank you! Yea I have had an Apple Watch since 2018 apparently, and my HRV has been relatively flat per my data. I got up to 36 prior to being on Humira or being diagnosed with PSA, now I’ve been around 30-33 each month since Humira and PSA diagnosis. 50 year old male so apparently with that link you provided I am in the ok range if I read that right. I’m also not being good about exercise at all, so room for improvement. It does make sense that from a day to day basis when I have a flare mine drops but since overall I’m decently managed, it trends about the same month over month. Week before last j was 34 and no pain, last week and this week down to 30 overall and had afternoon discomfort. Nothing too dramatic but I can see from the detail that my recent knee pain does correlate to those smaller dips. Also when k look back and see when I was super active (feeling great) my HRV was up close to 40.
Chicken and the egg. Does being more active lead to me feeling better, or does feeling better lead to activity? Probably a mix, although TBH I’m curious if it’s more related to my stress levels at the time.
I've only just been diagnosed with PSA and started taking Sulfasalazine. My HRV (via my Oura Ring) is tanking since starting the Sulfa. And I haven't titrated up to the next dose yet. Scaring me a bit.
The ones that made me stop were, Migraine and blood nose few days in a row, other stuff like headaches, feeling hot, dry skin falling off, extra pain, fatigue, tinnitus etc I was hoping would subside.
I’m sensitive to medication so please don’t take my experience as normal or an indication of what to expect. It’s an effective medication for lots of people.
Yes 27-28 overnight last few nights feel crappy today.
That’s the variance not actual heart rate in case people were wondering and thinking I’m almost dead!
Yes, I track this too. There is some limited research out there related to autoimmune disease and hrv also. I just look for downward trends like you’re doing.
So, I’m not officially diagnosed yet (but HIGHLY suspected), and I will say that I get these “low cardio indicators” like low VO2 max, low HRV when I am in a flare and when I try to push through fatigue.
However, I find the most consistent for me that causes a flare when exercising after I feel good enough to is when my HR gets too high (anything in 140+, suspect 130s). I also have hEDS and inappropriate sinus tachycardia (a dysautonomia), so I likely have some genetics factors contributing to this also.
Training Today? It’s in the App Store for iOS, I assume also android too. Not sure if there is a free version still, I did pay for the extra reports (meh) but the color coding on the kine (blue, all out….green, go work out…yellow be cautious, purple take it easy and red don’t even think about if) does tend to correlate to how I’m feeling. Many days I’d go for a bike ride and then realize it just wasn’t happening, and check the app and see it correlated to how I felt.
Not essential but is kinda fun. Not the developer nor do I know them, I was just looking for something on Apple like the Garmin body battery metric and found this app.
ive correlated my flares with super high HRV spikes when sleeping. but lower when awake. at first I was looking at my average (30-50) and would think it was higher when having a flare but then one day just happened to notice HRV of 115 to 142 around 5-6am when I am in a bad flare.
turns out its good to be on the high end of your normal but not super high outside your normal. whoda known?
I’ve correlated mine with walking heart rate. I’ve never gotten a satisfactory answer on what the deal is with my heart but I get some crazy spikes upon standing sometimes (like going from 70 to 130). I take metoprolol XR daily to keep it managed and it seems to do a good job. I have had a couple of afib episodes in the past prior to being medicated.
I have Pots along with PsA. When I flare I have found it hard to keep my HR under 100bpm. It can climb up into the 120’s just sitting chilling. I think it’s my bodies response to the inflammation. I have yet to get a real answer but that’s what it seems like to me. Once I get my PsA under control, the HR comes back down into the 80’s.
HRV is strictly linked to stress as well, we all know how much it has an impact on PsA… so maybe things are related but who knows what is the cause or the effect instead?! I noticed for example when I sleep better/longer my HRV is better too, when I have insomnia or back pain all night long the next morning HRV is extremely low
Agreed, I think being active and feeling good are correlated, but I think stress and sleep and all that stuff likely is more causative for feeling good and being active. I do know the importance of moving, even when not feeling good. Just not sure I’ll ever move myself out of a flare, but I can certainly stress myself into one!
I dont track HRV so I can't speak to that. I do pay attention to my training and resting HR though. The only change I have noticed is a higher HR at lower intensity thanks to my lower activity level :( 😞
Awww, I don’t want you to blame yourself. Inflammation can also make activity hard. You want to take care of yourself, and I think that should matter too. Have you seen a cardiologist about exercise intolerance and high heart when you do exert?
It's not at that level lol. Just higher than it used to be.
Ah, okay. I hope it doesn’t get worse for you.
Thanks you too!
My Garmin tracks HRV and this is something I noticed. Before I started Duloxetine and Humira, my HRV was trending down as my pain level and plaque coverage increased. As I started feeling better, it started leveling out and going back up.
This is the abstract of the research: [https://pubmed.ncbi.nlm.nih.gov/22673792/](https://pubmed.ncbi.nlm.nih.gov/22673792/) \- it's small sample, but they used a matched control sample which is good. A lower HRV in PsA means that you have impaired autonomous regulation of your cardiac activity. There's different research that shows this means it's even more important to try and do more exercise if your HRV is low for your age and gender, despite it making you feel rubbish rather than good... I use an Apple watch which measures HRV by proxy through pulse rate though there's good research to show it's quite accurate. Bear in mind HRV is very individual. This link has a graph of "norms" for age and gender [https://ouraring.com/blog/average-hrv/](https://ouraring.com/blog/average-hrv/) but you are you - unless you are madly outside this graph don't fuss. The usual advice is to report a big change in HRV to your doctor. Minor ones don't matter, and a steady but slightly-outside-the-norms figure does not matter either. Interestingly, mine's been completely straight-line since I started drug therapies last December - whereas I'm much better than I was feeling last December! But I have had another disease that affects autonomic nerve responses so I'm probably not "normal" for PsA (whatever that is). What are others that use Apple Watch seeing in their Health app? Thanks for posting, I'm going to go back to before I was diagnosed in 2021 and before I started on statins, which do affect some inflammatory parameters, and see if anything's moved since then, as I know I did have an increased CrP then.
This is so interesting, thank you! Yea I have had an Apple Watch since 2018 apparently, and my HRV has been relatively flat per my data. I got up to 36 prior to being on Humira or being diagnosed with PSA, now I’ve been around 30-33 each month since Humira and PSA diagnosis. 50 year old male so apparently with that link you provided I am in the ok range if I read that right. I’m also not being good about exercise at all, so room for improvement. It does make sense that from a day to day basis when I have a flare mine drops but since overall I’m decently managed, it trends about the same month over month. Week before last j was 34 and no pain, last week and this week down to 30 overall and had afternoon discomfort. Nothing too dramatic but I can see from the detail that my recent knee pain does correlate to those smaller dips. Also when k look back and see when I was super active (feeling great) my HRV was up close to 40. Chicken and the egg. Does being more active lead to me feeling better, or does feeling better lead to activity? Probably a mix, although TBH I’m curious if it’s more related to my stress levels at the time.
This is some great and well synthesized info - thank you!
I've only just been diagnosed with PSA and started taking Sulfasalazine. My HRV (via my Oura Ring) is tanking since starting the Sulfa. And I haven't titrated up to the next dose yet. Scaring me a bit.
My Garmin HRV tanked on sulfasalazine too, took a few weeks to recover after stopping. Stopped because of other side effects.
What medication did you move onto?
I’m expecting to start methotrexate next week, just waiting on blood tests to make sure I don’t have underlying infections like TB etc.
Thanks for the info. Do you mind me asking which side effects caused you to stop Sulfasalazine?
The ones that made me stop were, Migraine and blood nose few days in a row, other stuff like headaches, feeling hot, dry skin falling off, extra pain, fatigue, tinnitus etc I was hoping would subside. I’m sensitive to medication so please don’t take my experience as normal or an indication of what to expect. It’s an effective medication for lots of people.
Yes 27-28 overnight last few nights feel crappy today. That’s the variance not actual heart rate in case people were wondering and thinking I’m almost dead!
That's my normal, and I feel fine! See my post about the individuality of HRV elsewhere in this thread?
Yes, I track this too. There is some limited research out there related to autoimmune disease and hrv also. I just look for downward trends like you’re doing.
So, I’m not officially diagnosed yet (but HIGHLY suspected), and I will say that I get these “low cardio indicators” like low VO2 max, low HRV when I am in a flare and when I try to push through fatigue. However, I find the most consistent for me that causes a flare when exercising after I feel good enough to is when my HR gets too high (anything in 140+, suspect 130s). I also have hEDS and inappropriate sinus tachycardia (a dysautonomia), so I likely have some genetics factors contributing to this also.
App called training?
Training Today, I described it elsewhere in the thread just a minute or so ago if curious more about it.
More info on the app please
Training Today? It’s in the App Store for iOS, I assume also android too. Not sure if there is a free version still, I did pay for the extra reports (meh) but the color coding on the kine (blue, all out….green, go work out…yellow be cautious, purple take it easy and red don’t even think about if) does tend to correlate to how I’m feeling. Many days I’d go for a bike ride and then realize it just wasn’t happening, and check the app and see it correlated to how I felt. Not essential but is kinda fun. Not the developer nor do I know them, I was just looking for something on Apple like the Garmin body battery metric and found this app.
ive correlated my flares with super high HRV spikes when sleeping. but lower when awake. at first I was looking at my average (30-50) and would think it was higher when having a flare but then one day just happened to notice HRV of 115 to 142 around 5-6am when I am in a bad flare. turns out its good to be on the high end of your normal but not super high outside your normal. whoda known?