Problems getting my breathe: I am getting very... - LUPUS UK


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Problems getting my breathe

Iona467 profile image

I am getting very short of breathe, I am asthmatic but normally OK, but also have a lot of pleghm, I have a few things happening such as RA, Lupus and Fibro. Could this be a reaction to Methotrexate or am I just coming down with a chest infection?

11 Replies

I'm on methotrexate started in July & I take on Fri by Sunday I'm stuggling with breathing & feels like a ton of bri ks on my chest when i breathe the Dr's don't seem to listen to me so not taking it today to see what happens.hope you feel better soon .x

Hello Iona. I have no advice just sympathy. I have been experiencing the same symptoms. My thorassic consultant listened to my chest and said it sounded ok and he said the noise (like a train coming down the tracks!) Seemed to be coming from my throat@ he sent me for a barium swallow test. Had it last week so no results yet. I have not been diagnosed with lupus yet, but with fybro. I am only on pain meds gabapentin etc. Also i have lots of phlegm and choking fits.

I do hope we can get this sorted.

Hi I'm not on metho, but generally short of breathe. Been tested for chest problems manly clear. But bloods always show low ferritin, fluctuating Hb, I can never get it stable. Don't know if this helps.


We've talked before. I take nothing and woke up this morning with chest congestion. Maybe there is something "going around" that is affecting all of us????

Hi. I really empathise. I have Lupus, Fibro and Asthma and am also on methotrexate. It's so hard to know what's caused by what and I'm not sure the doctors are any wiser! My asthma has always been pretty well under controlled until this year. I was on high dose steroids for 5 months so put it down to that. I've been off them though since July and hadn't noticed any improvement. Saw an excellent nurse at the asthma clinic though who suggested I try coming off the aspirin as that can exacerbate asthma (was put on it in Feb by Rheumatologist as it can help Lupus related headaches). I've been coming off it gradually and I do think the asthma is better. Of course I'm now laid up in bed with bad headache and nausea 😁 - c'est la vie!!! Not sure if you're on aspirin but thought I'd mention it in case. X

Iona467 profile image
Iona467 in reply to Tinksie

I do take aspirin so will come off it!

Tinksie profile image
Tinksie in reply to Iona467

The nurse told me to do it gradually. Every other day and then every third day - hope it helps x

I have the same problem not all the time so I know it's not a cold just one day I have it an my voice will go in an out an the next day I will be fine an I don't have asthma but have always had bronchitis that flares up when it starts getting dark an all time in winter! I too am at a loss an have no idea my dr said all my blood work is normal an chest is clear but maybe because I never have a chest thing don't when it's happening,they just told me to use my inhaler it helps but not for long! If you find out what it is post back please.

I'm recording from pneumonia exacerbated by an asthma like attack. It wasn't lupus related. It came on very suddenly and my Rheumy said that one of the worst complications of lupus was pneumonia. He told me that if my breathlessness comes on gradually, I should see a doctor asap. In his words 'better safe than sorry' . I've no idea what your issue is - I'm just saying that it's probably something to speak to your doctor about. That's what they're there for.

I also have breathing problems but cant get an answer that works. At the moment I am going to exercise classes sent by respiratory specialist who says I have COPD but I'm not so sure. I also have a Hiatus Hernia and the nurse has said it could be that so she is looking into that for me. This has been going on for 18 months now and this is the first time anyone has really listened to what I say, so have everything crossed that something can finally be done about it. I also have Lupus and Osteoarthritis.I am also living in NZ. Thanks for listening to my rant. First time for me

Told my gp i was having breathing problems. Did the old breathe into a tube without inhaler and with. I didnt even get told what the results were. Just ignored what i told them and did another batch of tests. Bloodwork shows everything fine, even if i am on the very low end of range. They never mention that to me. I need to get a copy and read myself. Last report showed my CO2 (carbon dioxide) was on the border range high in my blood . Dr said nothing. Doesnt that mean i am having breathing problems? I hate doctors! i am going to get tested for pernicious anemia from hematologist who believes me now when i self diagnosed a clotting disorder that i believed i had. I was right.

Why cant doctors work with us and believe what we say. And never stop until they find an answer. What happened to really caring about the health of their patient? I have never met a dr like this except my childrens pediatrician.

Keep posting so that we can learn from each other.

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