One mess after another

[polymy]

After a flare of PMR after 3 months off pred; I was back on 20mg and feeling fine. Until this past couple of weeks that is. I have cardiomyopathy and a pacemaker/defibrillator device in situ. I was Getting a lot of palpitations and on 2 occasions almost fainted. I contacted my cardiology nurse who said it’s being caused by the pred and that the pred “has to go”. I explained that couldn’t happen all at once and that I had wanted to start reducing but my ESR hadn’t reduced enough so GP had said another 2 weeks on 20mg. I have another blood test booked for Monday and GP appointment for a week on Tuesday. I have reduced to 15mg this morning hoping it won’t cause mayhem with my PMR. I am so scared. I sometimes wonder if these health professionals ever think of talking to each other??? Nothing seems joined up anymore.

Liz.

[Hidden]

Hi Liz

I get so cross when Medics simply blame the Pred without any real evidence, my former GP blamed everything on it!

Did your GP tell you to reduce to 15mg, how long were you on 20mg?

You very much have to advocate for yourself l’ve found when being treated across Specialties, l had My Blue Folder with all my Copy Letters & Blood Test Results in!

Your GP sounds good so l’d be inclined to discuss it further with him as a simplistic ‘The Pred Has Got To Go!’ is not the answer when you have more than one Medical Condition.

Keep us informed on how things progress.

MrsN

[polymy in reply to Hidden]

Thank you Mrs N. I have been on 20mg for 6 weeks. My GP left me on it as my ESR was still in the 50s and CRP in the teens. They had gone down and were improving steadily. Poor pred gets blamed immediately. Chances are it could be but may just be the unhealthy state of my heart and need to up the beta blockers. Seeing my own lovely GP is so difficult. I have waited 6 weeks for the appointment a weeks on Tuesday. I could see someone else as an emergency but it would likely be a locum who doesn’t know me or never heard of PMR. Certainly doesn’t feel satisfactory. I need someone who knows my PMR and my add ons. I have reduced my pred myself hoping my arrhythmia will settle. It hasn’t happened for years so just in case it is the longer dose of 20mg. It’s always so hard to know what to do.

[Hidden in reply to polymy]

Perhaps when you see your GP next you could book a future appointment for a month ahead, so you know you always have one. Does your Surgery have telephone appointments? If you have a question the Doctor can ring you back.

I saw a GP in the practice a week last a Wednesday (he just covers Wednesday’s) he ordered Blood Tests & increased my Pred for a week but he rang me on Wednesday to discuss the blood results & give me further advice, so that maybe something they offer in your Surgery?

Take it easy now you’ve dropped to 15mg as you may feel the difference.

Take Care & Post again if you have any more questions.

Kind Regards

MrsN

[polymy in reply to Hidden]

Thanks again for that. My surgery does have telephone appointments but my GP only works Tuesday and Friday so telephone appointments are also difficult to come by. She generally gets the receptionist to ring and convey messages and there is no point in asking them questions. I have asked for GP to ring me and nothing has happened. The cardiology nurse is going to speak to his consultant on Monday and get back to me. He is a very reliable chap and knows all about hearts but apparently nothing about PMR or reducing steroids slowly. I will take it easy Mrs N. I do little else these days.

Liz.

[PMRpro Ambassador in reply to polymy]

Surely the CRP will be raised because of the cardiac problem? And the ESR?

Is it non-ischaemic dilated cardiomyopathy? If so the raised blood markers could well be due to the cardiac problem and nothing to do with the PMR not being under control.

[polymy in reply to PMRpro]

My cardiac problem has been nicely managed for many years and I don’t remember anyone mentioning raised markers until PMR began. Markers were all ok in Nov when I was on zero pred. The reason the assumption has been made is that I heave a pacemaker recorder box at home. It takes data from my pacemaker which is periodically downloaded at the hospital. My cardio nurse got the technicians to do a download for him. The info is very comprehensive even down to counting palpitations. The A/F problems started two weeks into starting again on pred and got progressively more over the next few weeks. That was how rightly or wrongly he came to the conclusion. It’s been more settled today on 15mg. I was never on 20mg for such a long period before so maybe he was right.

[PMRpro Ambassador in reply to polymy]

It is possible of course, most things are possible!! But a lot of people assume it must be the pred - it gets blamed for a lot!!

[polymy in reply to PMRpro]

It’s an easy get out. I agree. I meant to say my heart condition isn’t ischaemic. My arteries are all clear on angiogram. Never had chest pain. I suspect Im a victim of genetics. My Mum had a similar condition and so had my brother. Heart muscle simply not strong enough.

[MhairiP]

Oh dear - sorry to hear you're back on pred and are having problems with palpitations... and the cardio nurse! If the drop from 20mg to 15mg doesn't work (in terms of PMR pains), could you try 17.5mg? It sounds a difficult balancing act trying to keep PMR under control and the cardiomyopathy.

I couldn't agree more about health professionals speaking to each other!

[PMRpro Ambassador]

MY palpitations are associated with the vasculitis and are better on more pred rather than less. I do wish they wouldn't make such assumptions. Not saying it isn't involved for you mind!

However - as a complex patient I think you need more than a GP caring for you. There are option to reduce the pred dose in such cases. I know what you mean though - I'm a tad fed up with transferring info between doctors who work in the same hospital ...

[polymy in reply to PMRpro]

I agree PMRpro but the care has got less. The cardio nurse can no longer see me for 6 monthly appointments as they are using him more on the cardiac wards and have reduced his clinics. I’m stuck with a lovely GP who is mostly inaccessible and works 2 days a week. It’s not good.

[OutdoorsyGal]

One GOOD thing about US medical care is the advent of digital medical records. All of my medical history, test results, immunization records, appointment summaries and medications are logged in MyChart, and I can access my test results as soon as my doctor can. All the doctors and nurses have access to the system, so IF I get referred to a Rheumatologist I won’t have to update him/her on all that stuff.

AND, theres a messaging feature so I can express a concern to my MD and she or her nurse will get back to me, either with a quick answer or with a suggestion to make an appointment for a visit. (I’m trying hard not to abuse this feature, as I note the time stamp on the good doctor’s replies is often after 8pm!)

You can also request appointments, see your bill, and pay your bill online.