Anyone having asthma issues get much worse with SLE?

[dorko86]

Anyone had severe asthma exacerbations with SLE? Any correlation? I have always had asthma since a teenager but it has always been well controlled for the most part but this last 5-8 years has seen it get progressively worse and I am currently laying in a hospital bed on my second admission this summer related to a pretty severe exacerbation.

I was just diagnosed with SLE this spring, partially my fault on the delay because I didn’t seek out a diagnosis until I started seeing double, before that I just ignored my pain and symptoms as I was scared of being told lupus but more scared of fibromyalgia etc, you know the story. Anyways I just wondered if anyone has had severe asthma struggles that are worsened by the lupus? Or did I just get blessed with two separate inflammatory conditions as I have been told.

[Jmiller623]

Was diagnosed with reactive airway disease after lupus dx which is like asthma junior. Had one real asthma attack about 5 years ago while playing softball but never carried an inhaler and was never told I was an asthmatic.

Now I use a daily long acting inhaler with both a steroid and a bronchodilator. I think one of the meds I take worsens the gunk in my lungs so that’s something to think about as well. But to answer your question, yes. After lupus dx, I feel allergic to everything and now have some sister to asthma health probs. My oxygen sat drops to 90-92% on my best days. I’ve been scanned 20 times over for embolism. Always told it must be RAD. 🤷‍♀️

[dorko86 in reply to Jmiller623]

Gosh that’s scary, I hate the feeling of not being able to breathe. I hope they get your allergies and breathing under control! Thanks for your reply. I feel there has to be a connection for sure between the two

[Ebaymama]

Hello

Sorry you are in the hospital! So hard to get real rest in there. Since May 2018, have been dealing with Lupus symptoms and taking progressive meds to now being on hydroxychloriquine. It instantly stopped my joint stiffness & some pain:). Started it is March and have had major increases of allergies, congestion at night and breathing/coughing struggles. Frustrating not getting a full breath but not on inhaler yet. Used them previously.

I am curious about your feelings of possibly being diagnosed with Fibromyalgia? Is it because of it being often doubted or fear of the pain that goes with it? I would really like to know for my journey through all of this same pathway.

Wishing you well! Hope you get home soon

[dorko86 in reply to Ebaymama]

Thanks, I feel like somehow there must be a correlation between my lupus and breathing somehow because my breathing has gotten so much worse in last 2 years but I can’t figure it out. Maybe it’s just from extra inflammation, who knows.

My statement about fibromyalgia was just because I imagined I would get brushed off. Seems like in the past if I mentioned anything to my doctor I would be brushed off, my endometriosis was allegedly normal and just PMS, my double vision was “anxiety”, even when I explained that I don’t deal with anxiety when I’m not seeing double lol. So I just assumed if I mentioned joint pain I would be told “oh it’s fibromyalgia, nothing for it.”

[Ebaymama in reply to dorko86]

I hear you:). Fibromyalgia does not actually affect joints ... soft tissues & often muscles. Most physicians need much more education about it ... very complex disorder.

[NeuronerdDoaty]

I never had breathing problems in my life until the flare up that attacked my lungs. Now I’m on a daily asthma pill to help me fill my lungs with air plus breathing exercises. Each flare attacks another system. At 48 I started on asthma meds. I’m sorry you have to go through this.

[Leenie0811]

I had no idea asthma could be linked to lupus/SLE, I have had asthma all my life and never realised my inhalers were changed around the time my joint pain got bad. I used to be on the blue salbutamol inhaler and the brown Qvar inhaler for as long as I could remember. In the last couple of years I was changed over to the Fostair pink inhaler due to my throat and breathing issues. I still have the blue inhaler too but that’s more for the winter times, the cold has always made my asthma worse.

Sorry to hear you’ve been having a hard time, I hope you feel better soon 

Leenie x

[dorko86]

Thanks guys. I will get over this hump for sure. I just hate how bad my breathing has gotten and it seems like it has been a sharp decline in last couple years which makes me question if it is related.

[stiff19]

Yes I know the story I’m living it it’s hell

[ChocLab]

Definitely. I have had allergic asthma for a long time but this summer my breathing has been noticeably and has coincided with an uptick in my other symptoms. I certainly feel it’s linked. Hope you can get it under control, it’s the symptom I hate most about this whole thing x