My wife has made remarkable progress since being diagnosed with SLE last year and suffering many years undiagnosed before this. This is thanks to a few expert doctors, a great GP and the brilliant pointers and help received on this forum.
But we have one stubborn and serious issue that wont go away.
Anytime my wife gets below 3 prednisolone per day she struggles to breath, her 02 sats drop, her blood pressure rises and heart rate increases to dangerous levels. She has had around 4 ct scans all clear and loads of lung function tests all clear as well. It is like someone restricting the lungs with pain at the bottom of the right lung going around the back.
Connective tissue disorder that doesnt show up on CT
Blood disorder ???
Grateful for thoughts and experiences of something similar to give some pointers of where to look next please.
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jimbo1605
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If they can't find a definite cause - why not simply stick at 4mg pred if that is OK? Below 7mg you are on a dose of corticosteroid that is lower than the body needs to function so the adrenal glands have to start to produce their own version, cortisol, to top up the natural stuff. So you don't get to a lower amount of corticosteroid anyway and the side effects and risks are minimal.
Yes - that is a very different situation. Whatever it is - it appears to involve inflammation somewhere though - but it is not always reflected in the ESR/CRP. The range they quote for "normal" is not necessarily a range seen in patients. The quoted range is 1-20 or even 30 in some places. Mine hovered around 16-18 for weeks so no-one took any notice - my personal normal is low single figures so it was high for me. And in some people who normally would have a raised ESR/CRP in response to inflammation, there can be inflammation but while they are on pred at any dose they do not mount this response as the pred stops the liver making the proteins.
Have you had any input from a cardiologist or specialist cariology investigations like an echocardiogram? A couple of heart conditions are more common in autoimmunity - I think pulmonary arterial hypertension may be one. My own experience is only incidental - I am listed for regular echocardiograms and have had several other investigations (like stress ECG) - but with no clear outcome. So I'm just floating an idea x
Whisperit, Thank for for your reply and I think your thoughts are spot on. We have a Jobs worth respiratory consultant who rigidly sticks to the structural issues in the lungs and is also very good a barking up the wrong tree (we have been up about 20) and repeating barking up up the wrong tree (we are currently in that phase now).
I think this is looking more like a pulmonary issue and I am now going to see if our docs can test our heart. Thanks once again.
Hi have a look at POTS as well and orthostatic hypotension just to rule it out although they don't cause pain. Costachondritis can cause rib cage pain.
shaunalouise26 thanks for the post. I looked these conditions up last night and it could very well be either. We are going to mention to our GP when we see him next week. Great suggestions many thanks.
You can try to test this at home if you have a heart rate ,blood pressure monitor. Check your wife's blood pressure lying down for about 5 mins then get her to stand up and try it again. For POTS heart rate rises about 30 bpm. Orthostatic hypotension the blood pressure would drop. My daughter just diagnosed with POTS this week and I have been diagnosed with orthostatic hypotension confirmed by a tilt table test after years of similar symptoms. They also sent me to an endocrinologist to rule out a thyroid or pheochromacytoma first. Good luck I hope you get some answers and a positive outcome x
I had the same symptoms until the cardiologist tested me for pulmonary hypertension. This was indeed the issue and is now controlled by medicine thanks to The Golden Jubilee in Clydebank.
Can I ask how they tested for pulmonary hypertension? I have similar persistent pain & I'm in an at risk group. I had an echocardiograph which I understand can give an indication, but is not conclusive.
The whole thing started with a suspected heart attack and a very prompt visit by a paramedic. They did 2 ecg's and had me admitted to the hospital and the cardiologist suspected a pulmonary embolism.
The echocardiograph did show what I was explained as historic damage but a faint noise like a quiet third heartbeat ( which is called backwash) and a higher than normal pressure reading ( I think ultrasound and then an MRI scan was used) was enough for Dr Francis to refer me to SPVU unit in Glasgow where they inserted a probe from a vein in my neck to my heart. This showed a severe high pressure ( the ultrasound and mri) is not as accurate for this test) which is being treated fairly successfully by 2 drugs.
This in turn eventually led to the diagnosis of Lupus which unfortunately had been damaging my liver and kidneys.
It's such a pity this was diagnosed so late ( in 2013 when I was 51).
Although I had been seeing my GP more and more with so many different maladies it's such a difficult thing to diagnose!
This fits with my understanding that it is actually difficult (& invasive) to measure the blood pressure around the heart ( particularly the Right side).
Really sorry you had to experience a heart attack before it was found. I am also just starting to move towards diagnosis, but I have also accrued some damage (lung, bladder & ?Liver). They think I have MCTD ( overlap of Sle, polymyosoitis, & scleroderma) with scleroderma dominant. Its this that has a high risk for PAH.
You seem to be the same as me. I believe I have MCTD. Lupus symptoms and lots of autoantibodies for scleroderma and polymyositis. Think I also have sjrogrens in there as well x
Yes, definitive diagnosis is invasive as it requires catheterisation - but using a technique that is done daily and for many patients with cardiac problems of all sorts.
I had difficulty breathing ( terrible pain in the chest) and found coughing helped. I was coughing up some white phlegm too.
I forgot to mention that I was put in isolation as there was a bird flu scare at the time!
Cardiologist says there is a good chance this was caused by lupus but cannot say 100%. He is also now unsure if I had a pulmonary embolism but my venteicle was dilated because oif the high pressure (pap 78mmHg)During the suspected heart attack I was sweating profusely and only later realised I had not peed for two days. It was this information that led the doctor to check bloods which were well off kilter and my kidneys had packed up. Antibiotic drip helped calm things down but now I know what I know I personally think this was a bad flare which caught me when my system was in poor shape.
I thank my lucky stars for Dr Francis diagnosing pulmonary hypertension and the referal to rheumatologist who referred me to nephrologists and gastroenterologist!
I have to say I am so happy with NHS in Fife and know I am lucky to be here today.
Best wishes for a diagnosis leading to corrective medicine
Bill, The more i have looked at this today the more this all makes sense. She has lived with this for 5+ years now with two hospital admissions but no explanation. Thank you for sharing your experiences and I hope you are more stable and comfortable now.
I think that sometimes scans and PFT's don't show anything until some time after symptoms start. My symptoms started in 2011 but 2 CT scans showed minimal change in 2011 & 2013 whilst PFT's showed nothing. Now, however, my PFT's show marked bronchiolitis. I also get respiratory weakness when flaring and this only shows on particular specialised tests such as SNIFF pressure and PI and PE max. I hope you get to the bottom of it soon xx
Sarahsch Its great that Bill's response has also helped you as well so hijack away please. Well done to Bill for helping at least 2 people by his post.
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