Shortage of Breath with low Immune System

[Investigator1]

Hi Guys, any similar experiences re the above. I was diagnosed with GPA last December, done really well after treatment and down to 5mg of steroids but still taking Azathioprine. ANCA marker low and steadily reducing. However when I finally got to 5mg of Prednisolone after a couple of weeks started getting short of breath. Chest X-Rays Clear, I have got really fit and lost all of the weight (20lb) as a result of steroids, no blood in clearing throat and cycling 18 miles a day improves the situation I was using a preventative inhaler last year as it was thought I may have been slightly asthmatic. So my question is because of a low immune system has anyone experienced this I.e more susceptible to allergies, pollen, dust etc. I am flummoxed.

[May7]

Hello,

These diseases and their medications seem to affect us all in different ways, and I never know what's coming next.

Briefly, I was diagnosed with EPGA over 5 years ago, after breathing very suddenly became difficult when walking, just after recovering from a bad throat infection. No asthma, as proved by respiratory tests. Treated with Prednisolone, Azathioprine caused allergic reaction so been on Mycophenolate and reduced steroids ever since.

Had a multitude of problems caused by the vasculitis, but not so far suffered with any new allergies. My immune system found it difficult to fight a very bad chest infection a few winters ago, but apart from that I've just toddled on fighting all the other problems.

Allergies are a funny thing, it appears that healthy people can develop an allergy in later life that they've never had before, so we never know what to expect.

I am just trying to keep safe from this wretched virus now, and wish you and everyone else here all the very best.

[Investigator1 in reply to May7]

Thanks May7, your right, we are all different ships with different Captains on the same sea trying to find “Port of Remission” We have kept ourselves to ourselves but started to venture out more now but only when safe. Take care.

[Reggie1411]

Hi I have been suffering with shortness of breath for months. I have GPA and have had Cyclophosphamide x6 and Rituximab x2 , 30mg of Pred and all sorts of other lovely medication. I have been bacl and forth from A&E many times during the last 4 months and my x Rays have been clear also. Its been a mystery so........ the doctors have put a question mark over Covid 19 ?????? I did the test and i did not have it.... more mystery???? I am sorry that i can not give you an answer but I have had the same sytoms as you. You are not alone. You have done well with your recovery and weight loss and i just think you need to listen to what yiur body is saying and maybe you need to rest. I am new to Vasculitis (Nov 2019 diagnosed) and i am still struggling to come to terms with the new me. I ahve had to really pace myself as i have Ulcerative Colitis too and i get so angry sometimes but i am gradually learning that what we have is a very serious illness.

i do hope you feel better soon and get some of the answers you are looking for.

[Investigator1 in reply to Reggie1411]

Thanks Reggie, the thing is Buddy if I go for a cycle ride or a fast walk and get the lungs working it seems to clear it for hours.....strange! We have had our window closed during the night for the last couple of nights and that has helped. I think (although I have no evidence) that pollen or airborne particles are causing it and my immune system has difficulty dealing with it. I do suffer with hay fever but was told in June when I didn’t get symptoms that I won’t because “ hay fever is an over reaction of the immune system and you haven’t got one” funny old world. Another thing that is probably worth a mention is that 3 years ago my cholesterol was borderline high and my GP at the time (ex Army as we live near Catterick) put me on the Keto plan which is low carb and up to when I was diagnosed in December had lost 4 stone, my specialist is convinced that the negligible weight gain during high dose steroids and quick recovery (so far fingers crossed) is partly attributable to the Keto Plan. Please take care Reggie and stay safe.

[Reggie1411 in reply to Investigator1]

I remember how kind you were to me when i put my first post up in May so i send lots of best wishes and really sorry to hear that things have not been great for you. I you think it is pollen and poor air polution have you thought about getting an air humidifier ? Thay are meant to be really good and i think with some of them you can add essential iols to support breathing. Just a thought

take care

[Reggie1411 in reply to Reggie1411]

poor spelling. chemo brain and shaky hands lol

[Investigator1 in reply to Reggie1411]

Thanks again Reggie, having a look at humidifiers on Amazon now, living in the Dales is great air, unfortunately full of pollen and they are muck spreading at the mo. There are a lot of people worse than me. Talk soon.

[jagjitd]

Before being diagnosed with GPA, when I was reducing prednisolone I got a shortness of breath and my doctor thought it was hay fever. But when I increased it back to the old dose it stopped. I’ve heard some people taper 1mg at a time or some do alternative days. I’m not at that stage as I’ve only been diagnosed and hoping to start rituximab soon.

[Katie18]

It could be that you have reduced your steroids too quickly - maybe go up to 7 for a while then try again very slowly. I reduced by half a steroid in the last stages. Or you could be asthmatic and need a regular inhaler? Or maybe you are overdoing things - cycling 18 miles a day is a lot - maybe take some rest days & listen to your body. I have churg Strauss syndrome & it took me years to reduce my steroids and even now I need hydrocortisone as the high dose steroids damaged by immune system. You do need to be patient even though it’s not easy. Best of luck

[ZiggyDiego]

I have GPA with damage to eyes, lungs etc. Shortness of breath happens to me for several reasons: acid reflux caused by prednisolone, dust etc irritating damaged lungs and the disease itself. Sometimes all at once. The changes only show on CT scan. It’s much better when I’m on less prednisolone & lost weight.

[BrookeMyers]

Hi! My sister has a low immune system and COPD, but we never tried to find out if the two are connected. Does that happen quite often for you? My sister is often out of breath, and she relies on meds mostly. We have also tried checking for pollen spread and air quality with my climacell account in her area, but did not find anything conclusive. Maybe now that Ive read this, I will ask her to check with her GP or get some tests done.