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Tue, May 7 2:50pm · Polymyalgia rheumatica in Autoimmune Diseases

Hi John. Remember me … I’m the one with autoimmune attacking my lungs. Also bronchiectasis and interstitial pneumonitis … that’s why i keenly follow this bronchiectasis thread. I’m tapering my steroids now. Have been on 15 mg since June 2018. Last March
my rheumatologist
tried tapering me and we reached 10 mg But I had a bad flare up and was back to 15
Mg of prednisone . I was very sick
For six weeks and almost got
Hospitalized. Last May 2 I started tapering again and I followed one of the comments here to just do tapering 1 mg
At a time. So I’m doing that plus
My doctors advise to make TThSatSun as my tapering days and MWF I’m still
On 15mg. Plus he increased my cellcept to 3 tabs a day. In addition I was placed by my pulmonologist on prophylactic antibiotic . Meaning I take Zythromax 250 mg MWF. Hoping to stem off lung infection. It’s May 7… my low grade fever from autoimmune comes again but resolves itself. I need more rescue asthma inhalers .
But all in all, I hope things will work out well and I can go down 1 mg again after two weeks. I am “assured” when I read the stories of others having difficulty in tapering steroids but manage to get through it. My doctors emphasized that really I should start tapering the steroids fearing the side effect they can do to my liver and kidneys. So I am also psyching myself that I will succeed in. This tapering business without too much negative health issues. The goal is to get me to zero or max 5mg
Prednisone a day. Just wanted to share this.

Tue, Apr 23 5:54pm · UCTD in Autoimmune Diseases

Hi John. Thank you for the links you shared re UCTD … they were all informative.

Sat, Apr 20 11:36am · UCTD in Autoimmune Diseases

Hi. I was diagnosed Undiffetentiated Mixed Connective Tissue Disease
Or UMCTD last June 2018. As my doctors explained I have a little of several autoimmune illnesses like lupus, RA, Etc… but primarily now
My immune system is attacking my
Lungs. I am on steroids and
Immunosuppressant drugs. They are trying to taper
My steroids but
Unfortunately I have a flair up every time. Like today I have a full
Blown asthma bronchitis infection caused
By my immune system attacking my lungs bec of the tapering . It’s a tedious slow process … tapering of steroids. And yes “undifferentiated “ is same as “idiopathic”.

Fri, Apr 19 9:03am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Like your last line … (good) we have each other bec only we can understand what the other is going through

Sat, Apr 6 9:21am · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Hi Dee . I think it’s very okay for you to “whine” in this group. I think being able to share our “downs” with people who understand what we are going through is a big psychological help. I , for one, am a “whiner” to anyone who cares to listen or not . Venting out helps ease my psyche . And thank you Dee … I follow and appreciate your comments in this group . Gives me new knowledge on our common illness .

Tue, Apr 2 3:58pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Hi. They checked my autoimmune thru blood tests… forgot what they were … but one was ANA. I was immediately referred to a rheumatologist who confirmed that I am autoimmune and placed me on steroids and immunosuppressant drugs. Now he is trying to find the right balance for me so I can
Get off totally or a much lower dose of steroids yet prevent an autoimmune flare up. Oh btw, in Jan 2018 they found my immune system low so they thought that was causing my frequent lung
Infections. So I was given monthly intramuscular immunoglobulin shots. My condition worsened . So that’s when I was
Hospitalized for 17 days . And diagnosed autoimmune attacking the lungs. You can google it … I googled ad nauseaeum. Autoimmune attacking the lungs.

Tue, Apr 2 2:27pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Hi . My heart rhythm is actually in the fast side with arrhythmia. Fatigue is really from my autoimmune . Did not feel the fatigue until late 2017 and more in mid 2018. I just finished with an autoimmune flare up last week. My rheumatologist was tapering my steroids but my immune system attacked my lungs. My pulmonologist thought it was another long drawn infection until she noted my lingering low grade fever and fatigue despite the antibiotics … I was on three sets of antibiotics for 6 weeks. My pulmo increased my steroids . My low grade fever was gone and I started to recover. My rheumatologist further increased my steroids and added addtl tab of immunosuppressant drug. I started tapering off again today April 2. As suggested in this group about tapering prednisone, we will do it more slowly and maybe just go 1mg less after I reach the 10 mg marker that suits me. I’m now on 15 mg less 2.5mg today for the next two weeks

Tue, Apr 2 1:16pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning
Very well until 2014. Then I had bad bronchitis with bad asthma every quarter until it became more frequent. By 2017 I was on antibiotics almost every other month. Got hospitalized for pneumonia. Diagnosed positive for aspergillosis and treated for six months. Diagnosed for low immune system
And given immunoglobulin monthly shots. But still I was sick and getting worse.
Finally in June 2018 I was hospitalized for 17 days to be given a 14 day two strong antibiotics by ivy, and a bronchoscopy and lavage. Still they could
Not find any definite bacteria. I was scheduled to fly to singapore for a lung biopsy
When my pulmonologist had me tested for autoimmune disease. I tested positive and now on steroids and immunosuppressant drugs. Definitely my downhill went
Uphill .. slowly but surely. Your symptoms of low grade fever and extreme fatigue was what I had… together with the hacking cough and green phlegm. This kind of autoimmune is rare . It is not lupus … really immune system attacking the lungs primarily. So from asthma, then bronchiectasis, then interstitial pneumonitis, then aspergillosis (ABPA), then low immune system, then MAC, and now autoimmune system attacking the lungs. This is how my COPD progressed from a childhood illness of asthma. As the others, I avoid seasonal and environmental allergens / triggers. Bec of autoimmune I also have to avoid fatigue, a strong trigger for a flare up. But I am able to live a relatively normal life.
I’m female 71 y/o, retired, and live in the Philippines.