Autoimmune attacking my lungs
Hi. I’m new in this group. I was diagnosed in June 2018 of autoimmune disease attacking my lungs. This finally gave the answer to my long journey with my pulmonologist on why I had very frequent and strong lung infections. I also was diagnosed with interstitial pneumonitis in 2014. I was given prednisone 20mg
In June and now am tapered off to 5 mg. I I am also on Cellcept – two tablets twice a day. Unfortunately though my lung infections is one after the other and I am
On strong oral antibiotics every time … sometime for 20 days of two different antibiotics. These infections are causing me great physical and psychological pain. I am interested to meet other patients with the same autoimmune disease as I have. T
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Hi Suzie . Not that I’m happy you are sick, but I find comfort knowing someone in this journey. My highest dosage long term use of Prednisone is 20mg. They tapered it to 10 mg and I was on that dosage for several months. Then since I was good my rheumatologist and pulmonologist wanted to slowly taper me to 5 mg this feb. But I got an infection
That my pulmonologist was treating as a lung infection with oral antibiotics. For 10 days, stop 7 days, then again 18 days. Then my pulmonologist concluded that it’s my autoimmune hitting back with low grade fever, chills, achy muscles, headache. And brought back my prednisone to 10 mg. The low grade fever stopped but the bad fatigue and depression and headache is strong. I see my rheumatologist tomorrow Monday in Manila, Philippines. I have not been classified as Sjögren but the symptoms of dry eyes and dry mouth is already present and one of the things I will tell my rheumatogist. I am on two cellcept with plans to increase to four cellcept a day. My immune system is attacking my lungs and may be the reason for
My interstitial pneumonitis scarring that was discovered in Feb 2014. My lung condition worsened every year and caused
me several hospitalizations and procedures. Finally after a 17 day confinement on two strong antibiotics by ivy
That did not solve my infection, my pulmonologist stumbled on checking me on autoimmune and had my blood tested. All test results showed autoimmune . So my journey has really started to worsen very badly on Jan 2014 when I was
Hospitalized for pneumonia after
Getting a pneumonia for life vaccine. (I changed pulmonologist after this bec other elderly patients died
Bec of this strong
Vaccine .) Anyway Mayo Connect has been a great help to me .
I have googled
Everything about my
Mayo Connect gives me a view from a personal oatient’s viewpoint. Hope to hear from
You in this group.
Hi Noah! Good luck at your appointment. Results from my most recent blood work:
(from the specialist who knows a thing or two about a thing or two!)
SSA ANTIBODY 2 UNITS
Noah, the email above was longer, but it didn't show here. Maybe I've used up my allotment for the day? Hee hee…will try later. Suzi
Hi Suzi. I’m sorry about why my long email does not totally appear … I’m really a long email writer 😔. Anyway, I went to my rheumatologist and he further
increased my prednisone from 10mg to 15 mg. And my Cellcept from two tabs to three tabs daily. As of now I don’t
Have Sjögren or RA … it’s just my
Lungs. But my good doctor also said I’m a difficult case. He will taper my Pred to 12.5mg in 15 days and then 10mg and then just 1mg each tapering. Reading several comments in Mayo Connect
I see that one advantage I have
Living in the Philippines is that I can set an appt with all my specialists in short notice and I am accommodated. Although of course health expenses are personal expenses
For us and not
Covered by govt insurance. I pray that the next four weeks will be easier for me. Hope you get your answers too, Suzi. Btw I am female 71 y/0.
@suzi … I wonder what is SSA Antibody ?
Hi Noah, you can Google it, or search on MayoClinic.org. There's a lot of info out there.
Your Doctor said you are a difficult case. Maybe he doesn't know what's wrong with you? Have you had blood work done, if so, what did it show? Can you access your test results on line via your healthcare system web site? That's a good place to start, what test results are. You'll get to understand the stuff soon. Just keep Googling and asking questions. We have to be our own best advocate! I'm F, 62. Was your Prednisone and Cellcept raised to help your symptoms?
I had BOOP Pneumonia. Nothing but inflammation that attack the lungs. Autoimmune? I think so! You can't catch BOOP. It will take you out in the short run but if it comes on slowly, you can grab it by the horns and get rid of it. Of course the pulmonologists want to put you on Prednisone. I was on that crap/garbage for 6 months and the tapering off was hellish. I hate Prednisone. It will destroy your bones and give you cataracts. I hate Prednisone and will never take it again! It was hell and made me crazy along with the pie face and hair loss. I took the bull by the horns and Erythormycin, the antibiotic, will destroy inflammation in the lungs. It takes longer but will do the same as the hellish Prednisone. I got this information from a pulmonolgist who wrote about BOOP PNEUMONIA! He told me to take the antibiotc, Erythomycin -(sorry about the mispelling). Inflammatory bowel issues may be able to be helped by this great and old antibitotc and we don't have to put our body in dire straits with Prednisone. Dr. Fine, an endocrinologist informed me that tissue in our gut and lungs are similar or the same. There's other stuff to take besides deadly Prednisone. Not even doctors prescribe this awful drug to their kids but they give us Prednisone like candy. Bad State of Affairs.
THANK YOU for posting this! I am studying it out and will make some print outs for my Pulm! We're our only and best advocates. Thanks again.
I have the same problem. I was on cellcept but changed to azathioprine and prednisone along with bactrim. Not only are my lungs damaged but my muscles and joints are really becoming impaired. They diagnosed me with mixed connective tissue disease and a few other autoimmune disorders. So far pretty frustrating, have been dealing with it for 9 yrs. Looking at infusions but the risks worry me. Good luck!