Cardiac problems.

[lupylupus]

Since starting on Mycophenolate over a year ago I developed masses of palpitations. I have had lots of investigations including a cardiac MRI and they still don't seem to know what is causing it.

The consultant is talking about putting in a insertable cardiac defibrillator!!! HELP!!!

I have my own theory: I think my immune system is so compromised with all the medication that I must be picking up infections all the time and that is probebly what is causing it. However, I go back for the final decision from the consultant in January. Fingers crossed!!!

I was wondering if anyone else had any similar experiences?

Its so nice to belong to this site. I have only discovered it a couple of weeks ago.

I hope you all have a lovely 'lupus free' day today. x x x

[MandieR]

good morning x

Have just read your message, and altho it is not exactly the same i have experienced a few cardiac problems myself

I had to have a camera inserted behind my heart and it revealed a hole in my heart that I had apparently had since childhood....... I was then put on various mediacations which added to my tiredness and i became chronically fatigued 24/7

i have since been told that I have suffered several strokes as i then had to have 4 MRi scans of my brain showing the scarring due to the strokes, again I was put on other medications. NOW however, I have been told that my ''palpitations'' are nothing to do with my heart, even tho i do literally feel my heart doing summersaults

i have no had some of my meds stopped and have learnt to live with the wierd feelings in my heart.

not sure if this message will actually give you any help but i think it all goes under the immense umbrella that is LUPUS

have a good day huni......Mandie

[lupylupus in reply to MandieR]

Thank you Mandie!

It's strange that you were told that your palpitations are not to do with your heart?? Thats what palpitations are. They are irregular heart beats!

I am grateful to you for your comments and I do hope you are doing ok.

You are the first person I have ever interacted with that has lupus.

Nice to hear from you Mandie.

Margaret x

[Binkey]

You poor thing.It is so alarming for you.Like all of us,medication seems to be the only alternative and the effects of medication vary for different people.I am very bad at taking medication and I am sure I am a nightmare for my Doctor's.I know it will not help you much but,hopefully the Doctor's will be able to make you feel better.I wish you well.

[lupylupus in reply to Binkey]

Hi Binkey!

Thank you for your kind comments.

It is very nice to have your support and good wishes.

keep taking your medication!!! LOL!

Margaret x

[MandieR]

hey Lupylupus

thank you for you lovely message, you too are the first person that i have spoken to directly too

and as sad as this sounds i am happy to have a fellow sufferer on board.

I think it is imperitive to stay strong and positive and when you do know someone who has to face tghe same things then that gives you strength xxx

keep in touch xxx

Mandie

[lupylupus in reply to MandieR]

Happy Mew Year Mandie!

I hope you are keeping well and not afected by our unwanted friend Lupus! x

[MandieR in reply to lupylupus]

HAPPY NEW YEAR to you too my friend

so far it is an ok start to the year, altho that is because nothing new has raised its head so i am happy bout that

hope that you have had a wonderful chrsitmas and a very happy new year xxx

[lupylupus]

Hi Mandie!

It's me again! you must think I am never off this laptop!

I am delighted to know you! We can have a little moan now and again and know for sure that someone understands.

I will keep in touch.

Margaret x

[ALOMA]

Hi there - I also suffer terribly with terrible palpitations and a very tight chest with difficulty breathing.............the doctors just seem to ignore it every time I complain about it...................as with all other ailments that we suffer from...........its all just so frustrating!!xx

[lupylupus in reply to ALOMA]

Hi Aloma!

Sorry to take ages getting back to you. I only jusy noticed your post.

Palpitations and a tight chest should always be investigated, especially if you have difficulty breathing.

Try to take your pulse rate when it is happening and make a note of if it is irregular. Then you will have some information to give to your doctor and I think he/she will hpefully get it investigated.

I wish you well.

Margaret x

[ALOMA in reply to lupylupus]

Hi Margaret and Happy New Year - and hope its a Healthy one!!

Thanks for your reply - will do that - I must say I should have done that and don't know why I have not ......my palpitations are really chronic and I have them daily............will keep in touch and please do so too - thanks so much - wishing you well tooxx

[lupylupus]

Hiya!

Just to let you know that I have had the results of my MRI and the cadiac problems I have are unrelated to Lupus.

So not everything is caused by our friend Lupus :O)

However, you must definitely keep records of your symptoms. (Dates and times and what happened.)

Good luck with it all.

Margaret x