Update to previous post: I saw the GP yesterday for... - PMRGCAuk

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Update to previous post

Janann25 profile image
16 Replies

I saw the GP yesterday for a follow-up to my on-going problems. The 24 hour blood pressure monitor showed blood pressure ok but she’s still not had the results of the 7-day ECG monitor. In the meantime, I still have a heart beat which is still running between 90 and 100bpm. The GP could offer no explanation of this fast heart beat, just said to dial 999 if it ran at 120 to 230bpm for more than “a short time”. Not very helpful and she really didn’t seem to be able to offer any help, other than suggesting again than I started an antidepressant.

I asked whether an Endocrinologist would be able to help - kindly suggested by Sheffield Jane - but she looked blank and did t know of one locally, not even privately. She then very casually said that it was possible that this could be caused by Prednisolone. I didn’t quite know how to react because I wasn’t expecting this so just asked whether this would be permanent but she didn’t know. So, please does anyone have any more information? I honestly don’t know how I would cope if I had to live with this constant “banging” in my chest b

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Janann25 profile image
Janann25
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16 Replies
PMRpro profile image
PMRproAmbassador

Lots of people do find their heart rate goes up when on pred - it is the excess corticosteroid causing the "fight or flight" reaction.

Strange isn't it - I often have episodes of atrial fibrillation that include tachycardias in the upper 120s and 130s. I don't LIKE them and I do feel a bit wabbit while they are happening and tired the next day but I did check with the cardiologist about what stage I should worry and call the emergency services. She just shrugged and seemed to think (as I do) that 130 for a few hours was fine. I did call them when it was 190 one Sunday morning!

You will get more used to it - my husband had a fairly constant pulse of 90-ish with a,fib and didn't really notice. The verdict was I notice mine because it comes and goes.

Janann25 profile image
Janann25 in reply toPMRpro

Well, I’m gently reducing from 6 to 6.5 so it will be interesting to see if things improve.

PMRpro profile image
PMRproAmbassador in reply toJanann25

Mine is worse when I flare - more pred helps then!

SheffieldJane profile image
SheffieldJane

They have kind of dismissed you with the antidepressant haven’t they? I hate this attitude, I had to side step it before I got my first PMR diagnosis. It’s like being gaslighted! Is having a private consultation an option? I would want another opinion, either PMR/GCA knowledgeable Rheumatologist or an Endocrinologist in your region. The last time I had sustained fast heart beats, in the 80’s it turned out to be Thyrotoxicosis caused by Graves disease. It used to make the bed shake, I lost loads of weight and I felt extremely anxious. Eventually I was treated with Propanol ( beta blocker ) and Carbimazole. Have they at least tested you for a thyroid disorder, I can’t recall? I certainly had lots of little bumps and short spells of tachycardia with Pred but not all the time, every day. The trouble is, once they believe your heart to be ok they kind of stop looking.

Janann25 profile image
Janann25 in reply toSheffieldJane

The doctor looked to see if there was one at our local private hospital but just said, I don’t know who he/she is - and just changed the subject. Yes, I’ve had my thyroid levels checked and they’re ok. In fact, while I was last in hospital, I had several lots of bloods tested and I overheard the doctor say “her bloods are very good for her age” and seeing as I’m 81, I took that to be a positive!!I had a consultation with my private rheumatologist after I came out of hospital three months ago (when I’d had a suspected heart attack) and he just said to try to continue reducing. I really can’t afford to keep going back to private consultants and still not get the problem solved.

I’ve got a feeling I’ll have to try the antidepressant route because there doesn’t seem anything else to do. I just seem to be stuck between a rock and a hard place.

PMRpro profile image
PMRproAmbassador in reply toJanann25

"her bloods are very good for her age” - maybe HOW you got to be that age ...

Though OH's bloods always looked fine - but he wasn't.

Janann25 profile image
Janann25 in reply toPMRpro

Well, your comment about your OH has just knocked out any positivity I previously felt about my future 🙁

PMRpro profile image
PMRproAmbassador in reply toJanann25

Wasn't meant that way - I have no idea how his bloods looked so good, but this was a VERY longstanding problem and it did make it difficult to get the docs to listen when I said he wasn't right. But you don't have his history - I can guarantee that!

SheffieldJane profile image
SheffieldJane in reply toJanann25

Do you think you are depressed Janann? Or just fed up of not being understood? They could arrange for a Synacthen Test for your Adrenal function surely?

Janann25 profile image
Janann25 in reply toSheffieldJane

I’m sure I’m not depressed in the sense that I need medication but I’m definitely fed-up! At the moment I have no strength left to continue asking questions. I’m just trying to accept that my body isn’t working as well as it should and trying to get through days as best I can. Having said all that, it’s more than likely that before long I’ll be so exhausted I’ll be begging for antidepressants!!

123-go profile image
123-go

healthunlocked.com/user/tan...

Hi Janann.

Your GP is being dismissive and less than reassuring to say the least. If she doesn't know of any endocrinologist in the area she could easily carry out a bit of research on your behalf unless she can give you a good reason why you don't need to see one. Have you ever discussed a referral to Rheumatology? You've had PMR for some time and maybe it's time to be re-assessed by a specialist.

Recommending anti- depressants is, in my opinion, a diversionary tactic unless you have been medically diagnosed with depression.

The link above contains some suggestions on what to say to your GP during an appointment and can be adapted to suit your needs.

Please don't be downhearted. Have you a friend or relative who would support you? It can be hard to be your own advocate but don't be brow-beaten by your GP: it's your body and your health and you have a right to duty of care. x

Janann25 profile image
Janann25 in reply to123-go

Thank you for your reply. I was referred to NHS rheumatologist who was less than helpful. So I saw a private rheumatologist who is very knowledgeable about PMR but who doesn’t seem to see a connection to Cardiac issues. Next week I’ll start chasing up the results of the 7-day monitor and hope that those help.

PMRpro profile image
PMRproAmbassador in reply toJanann25

Bear in mind that all private rheumies are NHS rheumies - just you are paying to see them! Usually through the nose in the UK ...

And few of them are very good at cardiology!!!!!

Janann25 profile image
Janann25 in reply toPMRpro

My private rheumatologist from Chertsey has been very helpful in the past but I agree, not always very knowledgeable about Cardiac issues.

PMRpro profile image
PMRproAmbassador in reply toJanann25

Never asked Rod about his cardiology background! But I know Christian Dejaco, a world name in PMR and GCA, is pretty clueless!!!!

123-go profile image
123-go in reply toJanann25

I hope so. So stressful!

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