Lupus and the heart/lungs

[Ginge1234]

Lupus and the heart/lungs ? What are people’s experiences I’m struggling to walk for more than 20 mins cough breathless etc ? Any advice

[Spanielmadlady]

Hi .that's been me for the last 7 years.lung and heart involvement is quite common in lupus as is pleurisy, pneumonia and pneumonitis.i started with a chest infection which lead to pleurisy that inflamed my heart and put me into heart failure for a year.i now have a chest specialist and various meds for my lungs.

I've done pulmonary rehab and the first thing you learn is breathlessness is ok .I have to pace myself ,i avoid hills where possible and carry as little as possible too.stopping for a few minutes helps also.learn breathing techniques to control your breathing when out of breath.....in through the nose out slowly through persed lips using your diaphragm to breathe rather than just your upper airway.

Weather also affects my breathing hot and cold windy and damp also make me more breathless

If you havent already mention it to your rheumatologist you may need some lung function tests .best wishes x

[Ginge1234 in reply to Spanielmadlady]

Thank you I’m due to have MRI but defo worse with the flare iv had since March - it’s worse in the heat with swelling etc and it’s a bit scary I just can’t do hills or for long so at 47 yrs I think this is certainly a challenge thanks for advice x

[Spanielmadlady in reply to Ginge1234]

I started at 43 and I'm now 50.ive just had another chest ct scan last sunday .I've also had lung function tests and a bronchoscopy.like with other aspects of lupus it's an ongoing changing situation

[Susieliz39]

Hello Ginge1234

I’m currently in the same position as you and am due a consultation tomorrow with my rheumatologist and respiratory consultant 😳

I know that I need treatment as I’ve already had an initial appointment.

My advice would be to get it checked as soon as you can. I’ve bobbed along with Lupus for 10 years and until last year have managed to keep it under control.

Unfortunately due to lockdown, and appointment being postponed I’ve only just had this diagnosed. I can’t help but think I wish I’d done something about it some time ago. If I’m honest, I’ve had symptoms for a few years but just thought I was unfit and the cough down to reflux 🤔

Take care of yourself Ginge1234, let us know how you go on.

Sue x

[Ginge1234 in reply to Susieliz39]

Thanks yes I keep you updated just the waiting game now for appointments xx good luck tomorrow

[Susieliz39 in reply to Ginge1234]

Keep phoning to see where you are up to with your appointment. I did and got there in the end!

Take care x

[Ginge1234 in reply to Susieliz39]

How did your appointment go ?

[Susieliz39 in reply to Ginge1234]

Hi Ginge1234Sorry for the late reply, I’ve only just seen your post 🤪

Well..... I’ve had my 2nd infusion last week and am beginning to feel a little more ‘with it’ today. 👏 The infusions have been delayed due to my bod not playing ball. I’ve had to have my wisdom tooth out and then have been on a few courses of antibiotics for infection.

Hopefully 🤞my next infusion is in 3 weeks time and then I have a consultation with the respiratory consultant. Until then, I don’t know if things are going in the right direction but I am certainly hoping so!

Hope you are ok and that you managed to get an appointment sorted 🤞

Take care

Sue x

[miccika1]

I check lung function each year as im at about 70percent lung function. It's common with MCTD/lupus. I take mycophenolate for that. I have found that excercising (walking briskly as much as you can) help a lot with breathlessness. It just takes time to build. However you probably want to check why are you breathless, is it i flamation and you need more meds or some defficiu or who knows what or sply lack of excercise. Find out the cause and act accordingly

[kingsnorth]

I was diagnosed in 2014 with valve regurgitation and because it was stable l had now treatment or follow up appointments over the last year it has got worse and I’m now due to have an ultrasound of my heart l suspect my valve or valves have become prolapsed and l will need it replaced which really scares me. Lupus can also affect your liver as l also have PBC. Take care

[WinterSwimmer]

I'm sure other people know more about this issue than I do - but I have experience of being very anaemic as a result of active lupus nephritis, which can have a similar affect. I am mentioning this as perhaps it is a little less scary than heart problems. Good luck with finding pout what is causing it.

[Susieliz39]

Hi Ginge 1234

Thank you for asking about my appointment yesterday. The upshot is that I have to start treatment of cyclophosphamide (Chemo drug users to treat Lupus, vasculitis and others) ASAP but will be delayed as I have an infected tooth and need to have it taken out first and then wait for the gum to heal 🙄

This treatment may take 8 to 12 months so won’t know if it’s started to work for at least 6 months. If this treatment is successful for me, I’ll then go on to Mycophenolate which I know a lot of people on this forum take.

I’ve also been referred back to gastroenterology which I’m sure is playing a part in the inflammation. I’ve been seen before but diagnosed with gastric reflux.

Until now, I’ve not had much advice to offer as my main symptoms have been fatigue, joint, muscle aches and pains and of course ‘the cough’ but if I can offer some to anyone now in a similar position....act on your symptoms straight away. I’m reproaching myself now for not doing anything sooner. Hindsight is a wonderful thing.

Let me know how you go on too.

Sx

[Deiniol in reply to Susieliz39]

Can you explain what kind of cough it is please? I've had a dry cough for for years now and always put it down to my blood pressure tablets. I'm very breathless walking uphill and sometime the stairs but not always. I also have pain in my upper chest sometimes. I suffered quite a lot of chest pain in my younger years frim lupus but they never knew why, either inflamation of intercostal muscles or lining of lung they said. It was like throbbing that was excruciating, I darent breathe or lie down, and it lasted for hours reducing me to tears. I used to take co-proxamol, then co-dydramol but still took ages to get better. Not had it like that for years. Thanks.

[Susieliz39 in reply to Deiniol]

Hi Deiniol The cough that I have still has a question mark over what is causing it. It was initially diagnosed as reflux but I have since had a further investigation and the gastroenterologist doesn’t seem to think it is. Until I have my lung issue under control, I don’t think I will have a definitive answer. It could be linked to the inflammation in my lungs.

I suffer with the cough, particularly in a morning at the minute, probably an hour after I get up. It’s been described as a wet cough.

If I were you, I would get it checked out, better to know and then deal with it than not. And if everything is fine then that’s great! I so wish that I’d followed the same advice, but I didn’t. Hindsight is a wonderful thing. I hope you get sorted, take care. Sue x

[Susieliz39 in reply to Susieliz39]

Hi Ginge1234It’s official..... I’m losing the plot!! I can blame it on the treatment 🤦‍♀️😂I did reply, just not in the right place!! X

[Ginge1234 in reply to Susieliz39]

Haaa don’t worry I don’t even know what day of the week it is .. 😆

[Ginge1234]

Just an update ! I went for my mri lungs clear then mri die stress test on heart ended up having to be admitted through the crash team for what appeared to be anapqhaleptic shock ? Still only got 70% pictures . So unable to clearly suggest cause ? Although heart beat is too quick ? So awaiting lung capacity tests can’t do due to covid ! Did at home not reaching past 300 ? What ever that means. Symptoms still the same dry cough that leaves fluid in the mornings I have to clear worsens with movement n in line with my flare . So respiratory ref made apt end June and anothe lupus apt next week ! I just need some respite from sitting on my sofa .. I have a business to run .. 😩 1year in a flare only 3 weeks respite after steroid injections 🥲

[Susieliz39 in reply to Ginge1234]

Oh that’s not good to hear Ginge1234, that must have been such a shock for you. I really hope that you can move forward a little after your lupus appointment next week and that the respiratory appointment offers you some answers too. The wait to access the consultants is so long due to covid, I had to wait 8 months last year but there isn’t much we can do about that really. I do wonder if my current symptoms are as a result of contracting Covid. I was so poorly in Dec 2019 and was breathless and treated for a chest infection but antibiotics weren’t effective. Whatever the cause though, the outcome is still the same! Take care of yourself Ginge

Sue x