Do any of you have any heart problems because of SLE, renal transplant (due to SLE), or possibly due to long term raised blood pressure?

[MandaM]

Hi

I have been experiencing extremely high blood pressure, VERY raised heart beat (sometimes erratic), a solid, tight feeling across my chest, hand tremors, shortness of breath and dizziness when i exert myself. This is not all the time but mostly. Could be climbing stairs, def when i have to go down and back up again quickly, having a dance for a minute or two, digging in the garden, hoovering this type of normal activity. On resting for a few minutes these symptoms go away and everything returns to normal. I have just seen a Cardiac specialist who is firstly referring me for a CT Angiogram. I had an 'at rest' ECG but this showed completly normal results, (which i knew it would!), an ECG Treadmill excercise would've been more useful but the hospital only do these in the mornings, I'm rubbish at doing mornings lol. It would be helpful for me to know if any of you have had this same health problem and what was done for you, what sort of diagnosis/treatments did you get and how are you now?

Regards

MandaM

[Hidden]

What drugs are you taking Manda? Sometimes the drugs can produce these sorts of side effects. Also you don't say if you have had a kidney transplant yourself?

[MandaM in reply to Hidden]

Hi MaggieS, Yes i had live unrelated transplant in March 2006, all going very hunky dory, touch wood! I'm on Tacrolimus, Mycophenalate Mofetil, Prednisolone 5mg daily, Pravastatin Sodium, Irbesartan for the blood pressure which keeps me in the 'normal zone' Singulair for asthma and Citirizine for my itchiness. I use other things like oils and creams for my skin also.

[NatashaW]

Hello MandaM. I suffer from heart problems related to my Lupus. This wasn't detected until January this year when I unfortunately had a heart attack resulting in stents being put in. I havn't told you this to frighten you but to make you aware that these things can happen. If you are now seeing a Cardiologist and having investigations I would try not to think about it anymore until you have a firm diagnosis. I also must say I have had no further problems with my heart although I do still see the Cardiology team obviously and am now on lifelong heart meds. as well as the normal daily load of SLE meds. I definitely rattle when I move! Lol I hope this puts your mind at rest and wish you a very Merry Christmas. xxx

[MandaM in reply to NatashaW]

Hi Natasha, ooo how scary for you having a heart attack. My readings on excertion are alarming and could cause the same thing, but hopefully as readings go to normal when i stop what im doing i wont suffer from a heart attack. I was told at 47 i'm a bit young to be having these heart problems but then that can be SLE for you! Hopefully i wont have a long wait for my CT scan (helps working at the hospital!) and i'll have an answer.

Merry Christmas to you, i'm not bothering with it as i'm getting married on my birthday the 28th, next Friday. I'm hoping that Lupus wont ruin my day. x

[NatashaW in reply to MandaM]

Exactly I'm 42 and wasn't expecting this either! I hope you have a wonderful wedding day and thoroughly enjoy yourself x

[nicky1234]

hi mandam,

yes i have heart problems i ignored the pains in throat. tounge. back.

for well over a year. then cant remember why it came up but told doc

went for ecg it was normal,

then had to go into this machine where they put fluid in you.

that came back as ( cant remember the proper the name only just up )

but have angina have to take tabs for it and they do work.

also found out i have high blood pressure take tabs for that as well.

that was this year i think?

had a heavy year this past one will be glad when 2013 comes in lol.

[MandaM in reply to nicky1234]

Hi Nicky

Sounds the same as im having, a CT Angiogram. The dye is to see if any of the arteries or vessels are blocked to the heart. The blood pressure thing has been going on for years, i've been on meds for this for a long time and i have very well controlled blood pressure, unless i'm excerting myself! Although i don't want to be having a heart problem on top of eveything else, i will be glad to get a diagnosis and hopefully it will be something treatable although i'm guessing not curable. Lupus it's great isn't it not!

Have a good Christmas Nicky and fingers crossed a better year to come healthwise. X

[MandaM]

Hi Nicky123

Yes i've put up with this problem for a few years since my transplant, ive moaned aout it to my renal consultants but nothing was ever done, once a cardiac referral went off to a consultant in Brighton but i never heard a thing back. I finally went to my GP and he referred me to Eastbourne where ive been seen very quickly. Yes the years been eventful for me too but onwards and upwards lets hope for the following year. x

[MandaM]

Thank you so far for the replys x

[Hidden]

Well, the tacrolimus might cause both high blood pressure and cardiac problems, according to its list of side effects, also itching and shortness of breath (lung damage). I don't take that drug but I do take mycophenolate and prednisolone and both of those can also have horrid side effects including (mycophenolate) irregular heartbeat or palpitations, and itching.

I don't know what you use for your skin - but Protopic is also tacrolimus....

My (lovely, sympathetic) GP says that the worst thing about lupus is that the drugs are so awful - they keep us alive but also make us feel bad.... a spiral that leads to more and more drugs....

Take care Manda - it sounds as though you are having a tough time. I don't know how your consultants might respond if you suggest that some of your symptoms might be side effects - mine are very unsympathetic about such things and are always keen to prescribe something extra....

[MandaM]

Yes Maggie, quite and snap to that suggestion of the meds at fault! Falls on deaf ears. I'm not very involved with my GP, most things are managed through my renal consultant including all my meds. Oh well lets hope i can manage a dance or two at my wedding next Friday without my heart trying to escape through my wedding dress lol! Manda x

[roobarb in reply to MandaM]

Very best wishes for your wedding Manda. How lovely to have a winter wedding & on your birthday too! I hope you have a truly magical day, & stay as well as possible for it. Please tell us all about it when you are rested & recuperated, & I hope you get some answers to these heart problems asap. X

[MandaM in reply to roobarb]

Thank you roobarb. It's such a worry in the run up to the day, hoping that my body will be kind to me. I've done one of my wake up with a face rash/fluid bags under eyes thing the other day and now thats almost gone thank goodness! I seem to be not so fatigued this week which is good after a year of this. My tummy is chugging and bubbling like a witches cauldron as it tries to join the winter vomiters and my chest has tried very hard to be fluey but not quite succeeded!

So i'd say it's fingers crossed for the day, i'm not doing Christmas this year, no stress there for me then or unwanted calories lol, (i've been mean and i'm not having any family staying.) I will have as much rest as i can pack in as i will be rushed off my feet on the 27th with all the preps. I will let you know how it all went and eventually what this thing is with my heart. Dad died last December with heart failure so having to see a cardiac consultant brings this all back home sadly.

You have a great Christmas Roobarb, love the name, reminds me of the Roobarb and Custard cartoon! Wishing you all the best for a happy and best as you can, healthy New Year 2013. X

[jayniey]

Recently had echocardiogram with loads of that horrible jelly stuff (1 thing I hate is gak) n they found high pressure on the right side of my heart possibly pulmonary hypertension or lupus or cos my heart has been pushed over to rh side by my left side hemi diaphragm paralysis. I now have a u bend in the bowel bits where they've moved into the space my left lung was.