Pred reduction and heart rate/palpitations

[Rabbit090]

I’m currently tapering and trying to balance it out with my cyclophosphamide infusions. My (and my consultant’s) goal is to get to 5mg by end of June at which point I’m due to try Tocilizumab as my steroid sparer.

I’m currently tapering from 22.5 to 20mg and am experiencing very high heart rates and palpitations randomly. I spike to 134bpm just sitting sometimes. Normally my resting heart rate is about 73.

I’m also getting puffy eyes and a fuzzy head by mid day (I take Pred in the morning and Nefidiprine 3x daily and lisinopril in the evening for HBP).

Does this feeling like a Pred reduction thing? I’m never sure when or if I should be concerned. I’ve gone off over-checking my blood pressure as that tends to raise my blood pressure. 😂

[DorsetLady PMRGCAuk volunteer]

Think you need medical advice on this, either try 111 as it’s the weekend, or speak to GP next week.

Apart from the puffy eyes, the problems you describe seem to be common side effects of nifedipine… is that a new medicine to you?

[Rabbit090 in reply to DorsetLady]

I have an appointment with the Vasculitis/renal team on Tuesday. 134 is unusual but don’t think it’s 111-worthy, personally

I’ve been taking nifedipine for a few weeks now. This seems to be happening primarily in the morning and early afternoon and is better in the evenings (which also coincides with when my claudication eases up), which is why I feel it could be related to the Prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to Rabbit090]

Okay… but keep a note of when it’s happens and if that correlates with anything - like taking the nifedipine - or any other medication.

Hope you get an answer next week.

[Rabbit090 in reply to DorsetLady]

I keep comprehensive spreadsheets. 😂

[DorsetLady PMRGCAuk volunteer in reply to Rabbit090]

Ah, a woman after my own heart… 😊

[Rabbit090 in reply to DorsetLady]

Actually, I just realised the other day that you can record symptoms in Apple Health but it’s a bit fiddly. I haven’t yet tried to export the data either.

I’ve got data exported from my FitBit and MyFitnessPal ready to do an entire research paper on myself. Ha!

[piglette in reply to DorsetLady]

And mine. Health, money, purchases …….

[piglette]

If you are around 20mg now, I think the goal of getting to 5mg by June is probably a no no. It normally takes around two years to get to zero, for some people a lot longer and some reduce to zero in slightly less time.

[Rabbit090 in reply to piglette]

Just to be clear, I don’t have PMR but a large vessel Vasculitis affecting my aorta and its branches. I don’t really want to stay on steroids for two years if they aren’t needed!

[piglette in reply to Rabbit090]

Ah, that is different in that case. Sorry, I assumed you had PMR/GCA.

[Rabbit090 in reply to piglette]

yeah - the Vasculitis forums aren’t very active and my consultant considers what I have as a variation of GCA so I hang out here!

[PMRpro Ambassador]

If you have an arrhythmia of any sort it needs to be checked out. Pred often gets the blame but my atrial fibrillation was caused by the PMR and there is a much higher incidence in patients with PMR.

Not sure I understand why your doctor is waiting for you to get to 5mg to use TCZ - why not use it now?

[Rabbit090 in reply to PMRpro]

sorry - it got tagged arrhythmia for some reason. It’s just a fast heart beat that’s “palpable” which is why I called it palpitations. It’s not an irregular heartbeat

We are waiting for the course of chemotherapy to be completed, at which point we scan again and then move to Tocilizumab to get off the steroids. There’s a sort of dance we’re playing. My brachial and subclavian arteries were severely blocked - in my left arm, completely, so they are trying to get things under control so I don’t lose the arm! Not that I feel that’s imminent but likewise, if they need to do something more drastic surgically, the inflammation needs to be under control and the steroids as low as possible.

[PMRpro Ambassador in reply to Rabbit090]

Tachycardia is also an arrythmia ...

[Rabbit090 in reply to PMRpro]

Got it. Well, I shall see what the consultant says on Tuesday.

[Obscureclouds]

Hello I have LVV and have been advised I will be on Pred 2-3 years

Heart rate surges were very much one of my pre- diagnosed symptoms (and with a previous autoimmune illness ). I could be sitting just reading or something static and get a warning from my watch that my heart rate is over 120 for over 10mins of inactivity. It mainly settled down once on Pred but it started again when I tapered too quickly (30-20mg )until on got back on an even keel I tend not to worry about it these days. But I do have a low dose beta blocker ( previously prescribed) so can take one of those for a few days should it happen several days in a row. I think it’s something that needs Doctors advice in the first place but mine is happy for me to continue with this approach. I don’t think it’s happened since I got down to 12 mg and have used 0.5 mgs to slowly taper down to 10mg.

[Rabbit090 in reply to Obscureclouds]

That’s very interesting! My consultant didn’t really commit to timescales, per se, but I think there are studies that have shown 85% of Takayasu’s Arteritis patients achieved remission after 6 months of tocilizumab. Another one showed 70% of treated patients were in remission at two years while others had sustained remission at 6 months but Takayasu is usually a younger person’s disease depending on how it’s defined. My consultant may simply be taking a politically expedient approach by calling it Takayasu.

I had really non-specific symptoms that I only know now were the result of the inflammation. I only went to see my GP when I had weakness in my left arm due to the stenosis. Mostly a tiny bit of fatigue and night sweats.

The fast heartbeat is gone today after 2 days of 20mg from 22.5mg. In the beginning (at 40-30) I found that my blood pressure was all over the place - alarmingly so - which is when I ended up on Nifedipine as a vasodilator and a doubling of the lisinopril. The consultant did put it down to things needed to “settle” on Pred and now I just wonder if there’s a friction between the artificial cortisol and the adrenals attempting to kick in causing stress hormones to fluctuate. Or maybe a return of inflammation - who knows. Just spitballing really! It’s all been totally fine today!

[Obscureclouds]

Although at my first diagnosis my consultant said I had GCA thereafter he has only referred to LVV. My symptoms were fairly nonspecific as well but extreme fatigue being the main one. The PET scan he showed me highlighted inflammation in my aorta and branches off. I’ve not really had much of an issue with blood pressure - only my heartbeat surges as mentioned before. I would add in both autoimmune illnesses I have had surges above 120 when I have been given antibiotics as well. Glad it seems to be settling down for you. Hope that continues