I would appreciate your thoughts on what is happening to me right now and the best way to get help or do I just plough through.

[Sophiestree]

Back story of LVV and having had a second PET CT at the end of Nov 2022 I have been told I no longer have LVV, albeit I had gone as high as 10mg plus prior to the scan after losing the funding for TCZ.

I found my best place was 8mg, I did really well on 8mg but knew that I would be expected to reduce, and reduce radically. I didn’t but since Nov have got down to 6.5mg

This is my quandary. I get crazy high heart rates, when doing literally nothing, up to 120, which feels incredibly uncomfortable and I spend a lot of time doing very slow breathing to try and get it back down.

On exercise I notice (walking the dog) it only goes up to 90-100 so it’s baffling. This happens a lot and has done so over several months, but not necessarily daily. Could this be anything to do with my LVV originating from my aorta.

Finally, I am getting unpleasant head symptoms, vice-like grips, which were my original issues, that can make me wince out loud on occasion. But again, not all the time, but over the past few months and they are consistent.

I know there is no point going to the Rheumy as they will tell me I no longer have LVV and to get off steroids, hence I repeatedly cancel my appointments and reschedule, stocking up on pred so that I can manage myself.

I also have terrible fatigue in the afternoons but pretty sure that is adrenals. Could the head issues be that too?

Once again, I can’t do short posts, so apologise for that, but appreciate any thoughts on all of this.

Thanks

[PMRpro Ambassador]

You have had a more than 24 hour monitor to examine that tachycardia in detail haven't you? If you have an arrythmia of some sort it needs a cardiologist, correct identification and the right management - and sooner rather than later. Call 999 when it is happening, with a bit of luck you will get an ECG while it is happening - an ECG when it isn't happening is pointless,

[Sophiestree in reply to PMRpro]

I did have a 24 hr monitor prior to my parathyroid glands removal. But if course it wasn't one of those days. It doesn't happen every day and not for hours, more minutes. Maybe I'll ring the doctor and see what they say. Wondering if they do a 48 hr monitor which I might have more success with perhaps.

[PMRpro Ambassador in reply to Sophiestree]

You haven't got a smart watch? Or a friend/family who'd lend you one? The NHS is said to be using them as screening to sort out the patients who need better diagnostic tests. There are monitors that are used for 5 days or so - but they are expensive and there's a queue. But honestly - my GP told me to call 999 (that was in the days when heart/chest pain got a quick response of course) so I would try that now, you might get lucky. I didn't, I wish I had.

[Sophiestree in reply to PMRpro]

Thoughts on a Kardia Mobile that someone suggested to me?

[PMRpro Ambassador in reply to Sophiestree]

In a German comparison test it got a Very Good, there were better ones but I doubt there is much difference once you get to Very Good! It should identify the type of arrythmia and record ECG traces that you can brandish at a sceptical GP/ED.

But I would say you need something sorted asap;

[Sophiestree in reply to PMRpro]

Thanks. I was just thinking I might be in a better position going armed with something. Looking like either Kardia readings or a FitBit subscription

[PMRpro Ambassador in reply to Sophiestree]

Whichever is easier to use unless you have a handy teenager to set you up with it!!

[Kendrew in reply to Sophiestree]

Hi Sophiestree,

When I was experiencing what turned out to be more ectopic beats, I saw a cardiologist privately. He gave me a small heart monitor that adhered to my chest and I wore it for 14dys. If I felt an irregularity, I pressed it and that would highlight that particular moment on the 'readout' so they could see what my heart was doing then! They're not available with NHS treatment though.

ECG monitor

[Sophiestree in reply to Kendrew]

Interesting. Thanks for this .Was this expensive? I've finally stopped working altogether so not in the comfortable position I was once used to.

[Kendrew in reply to Sophiestree]

I'm afraid it was expensive but I had private medical insurance. I think it was about £450-£500... I had to convince AXAPPP that it was part of the diagnostic process before they'd agree to pay for it. That was back in 2021

[Sophiestree in reply to Kendrew]

14 days - how did you wash???

[readingbooks in reply to Sophiestree]

With the 14 day monitor you can detach the leads to shower once a day.

[Kendrew in reply to Sophiestree]

As you can see from the photo, there were no leads so I could still lay in the bath without it getting wet. I'd wash from the waist up carefully with a sponge being careful to wash around the monitor.

If I wanted a shower I'd take the shower head out of the wall bracket and just direct it away from the monitor onto rest of my body. A sponge or face cloth can be very handy.

It wasn't actually that much of a problem.

[Bcol in reply to Sophiestree]

Hi ST, I'm having similar "problem" with my heart beat ranging from 29bpm to 220bpm at its highest, it generally seems to range from 31bpm to 180bpm. I had a full heart scan a couple weeks ago and a 24 hour heart monitor with the push button that Kendew described. All on the NHS. I'm still awaiting the results but expect to hear something this week. I use a Samsung smart watch which is reputed to be very accurate but as its not the latest version it doesn't do the ECG, thinking about upgrading.

[Sophiestree in reply to Bcol]

You have two very extreme heart rates there. Hope they get to the bottom of that.

[PMRpro Ambassador in reply to Bcol]

Now here you'd be in hospital, medicated to reduce the top and a pacemaker to avoid the low! I wasn't let out until the pacemaker was in!

Those sort of extremes aren;t uncommon when you develop a tachycardia - the bradycardias are a reaction to the tachys.

[Bluey-1 in reply to Sophiestree]

An Apple Watch will do an ECG I understand. You can screenshot the trace. They are expensive though and it’s not a make I’ve used.

[Sophiestree in reply to Bluey-1]

My daughter has a FitBit that you can subscribe to, so wondering if that might be a start 🤷‍♀️

[PMRpro Ambassador in reply to Sophiestree]

Worth borrowing. The cheapest monitor is a pulse oximeter - shows the rate and shape of the pulse wave and what I use to check what I can feel. I know I have episodes I don't even notice and it swings in and out of arrythmia during an episode.

[Ridge in reply to Sophiestree]

I think it might be me. I use a Kardia and I find it invaluable. I was told to get one by the cardiologist I saw after my first experience of Afib. It’s big advantage is it records episodes of any arrhythmia which you can save as a PDF to show to a doctor. It helps them.

[Bluey-1]

It may do. Might be worth googling it to see if it does. Fitbits have developed a lot since the one I was bought years ago which just counted steps.

[Northernnugget]

Hi Whats LVV?

[DorsetLady PMRGCAuk volunteer in reply to Northernnugget]

Large Vessel Vasculitis (sometimes referred to extra cranial GCA as it affects arteries in torso and other parts of body rather than head)

[Sophiestree]

Can I just revisit this issue I have been having. I am now wondering if the high heart rate was a flare as my LVV originates from my Aorta. The reason I ask is because I continued to feel awful, had original symptoms of throat being so sore I couldn't touch my neck etc and so after about 10 days was prescribed antibiotics for throat infection. 7 days of that made not a jot of difference which is when the lightbulb moment happened re a flare and so I added 5 to my dose to make 11mg. It was at this point I realised that I no longer had the high heart rate, yes, the palpitation type feelings, but not particularly high. I took 11mg for two full weeks as I still had some symptoms, albeit mild. Yesterday I reduced and went to 7mg (I was on 6mg when this was happening), but instantly feel awful. Throat, back, head etc.

Happy to plow through and see what happens, but just wanted to check if this was to be expected. Thanks all.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Might be better if you raised new post -only those who have saved original are likely to see this -whereas new would be circulated to all.

But you may have had a better result if you’d stepped down in 2 stages rather than one -say to 9mg for a week, then to 7mg. Not saying it would have made a difference, but it may have.

[Sophiestree in reply to DorsetLady]

Ah thank you, I did wonder re posting. I will do that. and actually, do as you suggest and do 9 this week and 7 next week. It took me ages to find my post, I don't navigate HealthUnlocked very well....

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

The trouble is as there are so many posts on here-it only takes a day or two for yours to disappear off the screen…

To find your own posts go to your profile -and you’ll find all posts and all your replies listed there.