Breathing issues : Hi I have had SLE for 5 years... - LUPUS UK

LUPUS UK

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Breathing issues

Hhood profile image

Hi I have had SLE for 5 years now and feel like im deteriorating. Take Hydroxychloroquine. Seem to be in a constant flare with joint pain, fatigue is awfuland I have a breathing issue that has got worse and have been diagnosed now with a weakened diaphram.

I had transversmylitis in 2002 which is linked to MS too and respiratory consultant is unsure if the weakened diaphram is caused by my lupus or the transeversemylitis/MS. Being sent back to see the neurologist as they feel MS may also be causing some of my issues.

Does anyone else suffer with breathing issues? Does anyone have lupus and MS?

16 Replies

Hi Hhood , I can relate to the relentless fatigue and lack of energy . I’m sorry I can’t help but just wanted to say well done for posting and I’m sure someone on here will be able to offer some insight . Hope things improve for you , take care

Hhood profile image
Hhood in reply to Tiggywoos

Hi thank you so much for responding. It's good to speak with people who understand and know what struggles we have. Sorry your fatigue is bad too. I find this hard as I was such and active person before and acceptence of a change of life is a big challenge for me and I cant seem to get any balance even after 5 years from diagnosis, I keep going as much as I can then have very bad fatigue crashes .

Hi have you had your b12 folate ferritin iron levels and Vit d checked as these can all cause breathlessness fatigue etc many symptoms of these A.I diseases cross over.My breathlessness was terrible until my diagnosis of pernicious anemia and subsequent b12 injections ,I also had low folate ideally you want your optimal range for folate in double figures but under 20 ,a friendly gp told me this,low iron can cause breathlessness and fatigue and Vit d deficiency causes severe joint pain ,all the symptoms are similar that’s why it’s so difficult to pinpoint causes so check your levels are optimised,don’t accept normal you want them to be optimal (nearer higher end of the range) best of luck xx.

Hhood profile image
Hhood in reply to

Hi thank you for your response. They have done all my b12 and vit levels and all ok my iron levels are also always high and recently I was borderline with having heamochromatosis which they are monitoring.Had loads of tests showing I have a weakened diaphram so they are further investigating the cause but thinking it is either my lupus or a lesion in my neck from MS as they say my diaphram is controlled from nerves and muscles in my neck.

All so stressful, just want them to get to the bottom of it.

in reply to Hhood

That’s good I’m sorry you are suffering like this hopefully they will get to the bottom of it for you soon.xx

Looks to me that you need a change in therapy. What does your rheumatologist suggest? Hydroxy is a very mild medication for mild cases. Usually folks need more than that to control symptoms

Good morning.. yes breathlessness and weakness seems to be quite common in us lupus sufferers 😔Its such a horrid feeling.. especially when like me you can’t believe how your life has changed due to lupus... my voice has also been affected by an irritating cough and breathing problems.. 🫁which is a pain as I was singing in concerts at least onecea week and rehearsals etc 😏hope this helps you know your not alone .. take care..

Hi Hhood - I’ve had SLE since 2014 and have been taking Hydroxychloroquine for almost two years now. Since I’ve been on this I’ve been feeling much better! I alternative between 200mg to 400mg each day. Before this drug, I kept feeling low and tired and my legs would feel sore, I’d get more rash’s on my arms and face and my left side of the face head and eye would really hurt too. Fatigue is a big part of lupus for some patience and there are times I struggle to get out of bed and complete the basics. What I’ve found is if I push myself to do some basic exercise it sometimes helps with my fatigue. I hope this is helpful in some ways x

Hi Hhood. I am so very sorry that you are suffering so much. Breathlessness makes the fatigue so much worse. I have asthma so can relate a little. It sounds to me as if you need a stronger medication or an additional medication to the Hydroxy. I know it is not much help but I just wanted to say that I really hope that your doctors can find a treatment more effective for you xx

Hi Hhood.......sorry to hear of your troubles. Fatigue was dreadful for me while I was still working and I would have injections of depemedrone which helped enormously. Since retiring I’m lucky to be pretty ok now though still on hydroxychlorquine which keeps things on an even keel. I remember reading years ago that symptoms became less severe as you get older. In my case that is definitely true as I no longer need the injections and often I will halve my medication though never completely stop it. I wish you well, and remember.......if you’re really fatigued, if you’re able just have a quick nap.

Also make sure to check your lungs. Lupus might be attacking your lungs. For example I have lung function test each year because lupus attacks my lungs.

Iona467 profile image
Iona467 in reply to miccika1

I’d like to know more about this test. In 2019 I had pneumonia 4 times, pleurisy and 2 severe lung conditions. My asthma clinic said my lungs are scarred, my doctor said nothing to worry about.

miccika1 profile image
miccika1 in reply to Iona467

It's just called pulmonary function test. My rheumatologist wants me to do it once a year because he thinks I have ILD due to lupus and wants to monitor if there is progress of the disease or not. After the test you find out how much of your lungs are functional. Scarred lungs makes the scarred parts not functional. You can't get the function of scarred tissue back but if it continues to scar because of autoimmune attacks you want to adjust the therapy. Depending on why your lungs are scarred you should follow or not. For example if there is nothing you can do may e that's why your doctor told you not to worry about. If there is progressive scarring that you can do something about you want to follow up...

Iona467 profile image
Iona467 in reply to miccika1

No doubt there is a problem with my lungs, the hospital said it takes me 3 days to go to stage 2 with my lung problems. I’m on a critical care list yet for 10 years my GP refused to have me tested for my kidneys in spite of emergencies into hospital and very severe infections. I had cancer and lost a kidney, now have problems with other kidney. I told my Rhumatologist off as he says it was all fibromyalgia. His boss was horrified at his treatment of me.

It’s the Lupus that affecting my lungs, kidney and back (rheumatoid arthritis) yet he refused to treat me for them.

miccika1 profile image
miccika1 in reply to Iona467

Good you changed him...

Yes, I have breathing problems and Lupus. My GP will not let me have the MS tests, my friends with it all think I have. I’m a difficult case as have a lot wrong with me, my doctor fights against any test. I find it hard just to get the results back on the few tests he ‘allows’.

Now have found another doctor.

My fatigue is just terrible and I spend days in bed. I fall over a lot so bed is a safer place for me when I am overly fatigued.

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