Hi all, I'm hoping some of you might be able to shed some light on this for me.
I've had shortness of breath since nov 2013 and have been diagnosed with interstitisl lung disease. I also suffer a lot from enthesitis pain, currently diagnosed as psoriatic arthritis.
I've always put chest pain by my sternum and under my left shoulder blade down to enthesitis, but now I'm not so sure. I've been monitoring my heart rate and at rest it can be anywhere between 74-118. Ive also had periods of feeling clammy and faint only to notice my heart racing at 135....this can be just sitting down so I'm not sure what causes it. I've also nearly passed out before when it suddenly dropped to 61.
I'm seeing my rheumatologist on Monday with a list of symptoms as long as my arm. I started keeping a journal of all my minor or intermittent symptoms to help push for a lupus diagnosis. I've stopped waiting to be asked the right questions....I've never been asked about anything but the pain since I was initially diagnosed with RA. Ive had a negative ANA several times, but I still feel that lupus explains so much.
Do any of you have heart issues from lupus similar to what I've described? Should I be discussing this with my rheumy or pushing my GP for a different diagnosis?
Thanks for any advice you can give and sorry about the long post!
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Chempixie
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I would recommend you talk to your GP about the problems you are experiencing with your heart rate. They will be able to do some tests such as an ECG and 24 hour holter to better assess what's going on.
You say that you have been diagnosed with an interstitial lung disease, how was the diagnosis obtained? I have a very rare ILD that started a couple of years ago but these need to be managed by someone who specialises in these conditions because they can be very disabling and need to be regularly monitored. Ever since my lung problems started my heart rate has been erratic due to the extra strain on my heart of it having to pump harder to try and get oxygen to my body. ILD's damage the very delicate air sacs in the lungs that transfer oxygen into the bloodstream and remove the gasses.
I've learnt the hard way that we all need to be more assertive about our health.
I've had 2 ECGs done but both have been normal. I think I need to ask for a 24hour monitor as it's not always present.
I had a HRCT scan and pulmonary function tests to diagnose my ILD. It's early stage as my scans were clear. My PFTs showed reduced gas exchange. I've been on ciclosporin since the diagnosis which has given an 8% improvement to the figures but not much noticeable difference to my quality of life.
Yes I can relate very much to what you are asking Chempixie! I don't have lung disease but I was diagnosed with RA three years ago and all I'm now checked for by my rheumy is RA/ synovial swelling and joint pain. I have negative ANA but low positive RF so am "equivocal". I always have a raised ESR - often high and CRP when it's been tested has been high too. I am terribly intolerant of drugs so a lot of my non RA symptoms such as skin problems get diagnosed as allergies or idiopathic skin reactions as part of broad connective tissue problems.
I did see a specialist for a second opinion six months ago but he towed the line with his colleague or genuinely believed that I have RA, autoimmunity but not Lupus. I still haven't had synovial swelling back for a whole year whereas my ESR is still often pretty high and I feel terrible a lot of the time - am waiting to see a neurologist now for severe peripheral neuropathy. I am fairly sure the neuro will also tow the line and put my problems down to RA too but despite this I think I have a form of Lupus rather than RA. I get nose bleeds, very dry eyes and have mild Raynaud's too.
Regarding the heart trouble - I've had irregular heart beat for over a year now - ever since I was put on a Parkinson's drug a year ago. I spent the night in A&E on a heart monitor but nothing came up so I was discharged and told it was another drug reaction. I complained to my GP that I was getting palpitations about five months ago and went on a holter monitor for a week. All that showed up was frequent spells of ectopic beats - I think this is called PVC - a kind of arrhythmia. My dad had arrhythmia too and both my parents died quite young of heart failure so I do fret. Apparently this is quite common and probably hereditary - it doesn't seem to play up when I'm stressed or anything - just suddenly jumps around madly, often stops me going to sleep. The GP said I'm just sensitized to it now and that's why I notice it.
Hope this helps a little. I would definitely ask for a holter monitor for a week rather than 24 hours.
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