Could this be PMR related?

[Janann25]

Having lived with PMR for almost 5 years, I really felt I understood this illness pretty well but I’m having different issues just now and am having pain around the midrib area, accompanied by Heart beat of around 140bpm and blood pressure of 205/95. This started a couple of months ago and I was taken toA&E and then to the AcuteCardiac Unit where I stayed for 6 days. My angiogram showed very clear arteries, ECG was OK, as was Echo Cardiogram. My blood tests showed low levels of troponin which is indicative of a heart attack but because all else was ok, I was sent home with no follow-up appointment needed. However, since that time, I have had several admissions to A&E with the same unexplained symptoms.

My concern is that I now find that the raised heart rate and BP rate is preventing me from sleeping and I feel really unwell. I’m currently on 6mg Pred and have stopped trying to reduce but really wonder whether the PMR could be causing this. My GP has tried me on sleeping tablets and low dose diazepam and wants me to start an antidepressant. I know that PMR and Pred affect the adrenal glands so before I go down that route, I’m wondering whether could have been the cause of the heart rate/BP issues.

It probably isn’t connected but, knowing the amount of other issues which other PMR sufferers have experienced, I thought I should ask.

I’m really sorry that this post is a bit long- winded but my quality of life has been really adversely affected and so Im trying to find some answers.

Thank you for your patience.

Jan

[SnazzyD]

Has anyone suggested a 24 hour ECG? Not all cardiac events happen at the time of investigation.

[Janann25 in reply to SnazzyD]

Because I was admitted to the Acute Unit, I was linked continuously to a monitor - but nothing untoward happened at that time. Typical!

[123-go]

So sorry you're going through this. I do feel that something more needs to be done for you as it's clear your anxiety levels are high. Has anyone considered costochondritis? There is more information here:

nhs.uk/conditions/costochon...

I don't believe that antidepressants or sleeping tablets are the answer. You may have to steel yourself for a bit of a battle with your doctor and ask him what else can be done to get to the bottom of these symptoms.

[Janann25 in reply to 123-go]

Dr has ruled that out but I’ll definitely try to get them to investigate more things.

[123-go in reply to Janann25]

Good! Remember that it's your body and your health. Please have a look at the following useful link posted by a respected member of this group.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Have you had a 24-hour (or longer) Holter ECG monitor? That was running when you had an episode?

I had similar experiences - though not the frequent A&E visits - but they found nothing, My one and only raised CRP was on a day like that. I complained about these episodes but sine one never appeared on a monitor there was nothing wrong! Eventaully I was admitted for a big flare of PMR/MPS muscle spasm and treated with a 3 prong treatment: high dose NSAIDs and steroid i'v. in the morning, i.v. diazepam in the evening - which triggered a massive atrial fibrillation episode (known adverse effec though apparently they didn't knowt). Once the a/f was diagnosed and managed - the episodes disappeared. It was just they had never seen them.

Some time later I was having different problems - waves of faintness. Also never appeared on an ECG. Until I had a TGA (transient global amnesia) and was taken to hospital where they triggered a/f by giving me i.v. diazepam again as I was agitated. THEN they noticed I was having bradycardic episodes with pauses in heart beat of up to 7 secs - the cause of the faintness. It's a long time without a heart beat! A pacemaker was put in - all is well again.

But what I'm saying is that just because it isn't on a one-off ECG doesn't mean it isn't happening. Oh - and mine is PMR related - the autoimmune part of the PMR almost certainly damaged the cells in the electrical system in the heart leading to an arrythmia of some sort.

[Janann25 in reply to PMRpro]

Yes, I’ve had a 7 day monitor but I don’t experience erratic beats, just very fast - and loud! - heart beats. The doctors say that this is stress related but I don’t feel that that’s right. It’s just as if there’s too much adrenaline rushing through my body which causes the problem. I even find it difficult to sit while it’s happening, I just need to keep moving around. The problem is, the doctors are convinced they’re right and I don’t have any evidence to suggest any alternative.

[SheffieldJane in reply to Janann25]

I wonder if you are right and actually a referral to an Endocrinologist would be appropriate? I was struck by a whole other world of knowledge when I saw mine following a failed Synacthen Test. Just a long shot. You must be so worried.

[Janann25 in reply to SheffieldJane]

Thank you for your reply - and also your comment about an Endocrinologist. I will have to look up what they do because I’ve only “seen” a GP a couple of times since this started - and they both have differing opinions - so I will have to make sure it looks as if I know what I need before I ask for it!

[SheffieldJane in reply to Janann25]

They deal with all things hormonal. I had one with my thyroid disease. Obviously they know loads about the Adrenal system. Mine wants to talk to me again my last (2 years ago ish) Synacthen test showed normal potential for Adrenal recovery. Fascinating man, he would draw diagrams and explain the intricacies of it all. It would be perfectly appropriate for people who have had to take steroids long term to have the advice of an Endocrinologist. Convincing your GP might be tricky. Although alarming symptoms like yours and Cardiology drawing a blank would be a very good reason.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Well you both may be partially correct…too much adrenaline is normally caused by stress…....might be worth noting SheffieldJane recommendation for referral to Endo.

[Janann25 in reply to DorsetLady]

I’m going to investigate what an Endocrinologist does and then see what GP says - whenever I can actually get an appointment!

[PMRpro Ambassador in reply to Janann25]

Always a problem! But tachycardia is also an arrythmia - doesn't have to be erratic.

[Janann25 in reply to PMRpro]

That’s interesting - always thought it had to be an erratic heartbeat. Still not had the results from the 7 day monitor so I’ll chase them up.

[PMRpro Ambassador in reply to Janann25]

It is anything that is NOT a normal sinus rhythm with pulse in the normal range. And of course - if YOUR normal pulse is 60 (bottom end of normal) and you suddenly start running at 100 (top end of normal) it needs an explanation!

[Purpleprimate in reply to Janann25]

Have they told you to cut out caffeine, drink 2/3 litres of water a day, & lower your alcohol intake? This was what I was told to do.

[Africschoice in reply to PMRpro]

OMG really......

[Deb_M]

Sorry you're going through this! Simply adds to the stress when we can't solve a scary symptom . I hope you are able to get to the bottom of it soon. This may sound very basic and simple and perhaps you've already looked into it. Or maybe the doctors did when you were in the hospital… But often times they don't even ask the question… Are you taking any teas, vitamins, supplements, herbal remedies or anything similar? Caffeine or herbs hidden in any drinks or special foods? There are a lot of combinations between Supplements and Prednisone and other medication and vitamin/mineral/herbs that go unnoticed or unconsidered that can cause reactions. Just a thought.

[Janann25 in reply to Deb_M]

And thank you very much for your thought! I’ve taken Vit C, Magnesium and lutein for many years but there’s always the chance that something in my system has changed. I’ll investigate.

[Bonnie-ma in reply to Janann25]

I would be careful when taking Magnesium as too much/too little can affect heart rate. Might be significant.

[piglette]

It does seem unlikely that pred would start causing such problems after taking it for five years unless there was something else that had changed that affected it. The fact you are currently on 6mg does point to a possible problem with the adrenal glands having to wake up. In my case I had dizziness, fainting and extreme tiredness, but adrenal problems can cause other symptoms too such as hypertension and tachycardia. Although your symptoms do seem very severe, so could point to something else as well.

[Flutterbies57]

I have been going through mid rib problems too . I was down to one , had a flare , ended up having to go to 10mg , then I had a hospital stay , lots of test done , but no diagnosis . I know that everything isn’t right , but don’t know what is coming next . I thought it was just old age setting in . I am on antidepressants , but in hindsight I wish I had never taken them . Weight went up rapidly and I have had many serious attempts to get it down .

[PMR2011]

Agree with others. It deserves further investigation. I had similar symptoms about 5 years into my PMR journey and it turned out to be hyperthyroid. By the time they diagnosed it was well advanced and they almost hospitalized me. Medication took care of it nicely and it resolved after about 2 years. It was the endocrinologist who best determined the med doses.

[phebamom]

I am having a similar issue. BP will not go down. On high dose Valsartan and still usually 155/ 95. When my BP does get down to nomral, usually the middle of the day, my pulse is racing. Treated for anxiety, with Buspar. Works great for anxiety, but anxiety not the cause of the high BP. I am jittery and nervous all of the time. I am suspecting my thyroid.

[Noosat]

You said you had only seen a GP a couple of times since start of problem. Have you seen a cardiologist?

[Greytree]

A cardiologist would be a good idea. This might not be the same but I have a friend who has had episodes of a heart rate 200 plus (doesn't have PMR, is not on prednisone). She was told after she had the second one that she needs an ablation and a date has been set for one soon. Here is more info on what that is mayoclinic.org/tests-proced...

[Africschoice]

I'm on duloxetine for anxiety and depression but it doesn't stop the anxiety, raised heart rate and raised blood pressure, so I take beta blockers, Proparanol as and when needed. Since dealing with PMR I find I'm taking this tablet nearly everyday. It definately in my mind is related because I think I get a little panicky with the pain as it causes me to shallow breath. Would definately have beta blockers over diazapam any day, the stuff really turned my lights out, no going down that road again. Over the years I've had more "pams" for antidepressants and I'm sure there must be newer drugs by now out there. 🤔

[Creas]

Are you sure you've got PMR? Your drug routine sounds more like you're being prescribed for fibromyalgia?

[Rugger in reply to Creas]

Have you realised you're replying to a post from 2 years ago?

[Creas in reply to Rugger]

No, sorry. I struggle with online stuff - never really in control of where I want to be looking!

[DorsetLady PMRGCAuk volunteer in reply to Creas]

If you go to a post - it says just under the title when it was written from 1 hour to 10 years ago… 😊

[Rugger in reply to Creas]

No apology needed. It's just a waste of your time and energy, if the original poster has moved on. As DL says, you can spot when something was written fairly easily. 🌻