Autoimmune attacking my lungs

Posted by noahs @noahs, Mar 11, 2019

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

Liked by Suzi R, samandhuck

Hi Noah, you can Google it, or search on MayoClinic.org. There's a lot of info out there.

Liked by noahs

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@noahs

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.

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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?

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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.

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@oakbourne

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.

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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.

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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!

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samandhuck, I am praying you feel better. Be careful with Prednisone. I think it's an awful drug and I knew one girl who died from it. She took hugh amounts of Prednisone and it put her in the grave. Why do doctors give it out like Candy and won't give it to their own kids? I hate autoimmune diseases. I think we live too clean a life. A Peruvian Shaman told me that. Kids don't play in the dirt any longer. No more playing hide and seek and running around. They would rather sit on the couch and play with their stupid I- Pad Cellphones. It's destroying their brain and they have no social skills. Playing in the dirt and getting dirty will help our immune system not attack everything in sight.

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@samandhuck

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!

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Hi @samandhuck, welcome to Connect. You mentioned you have been diagnosed with mixed connective tissue disease. I thought you might also be interested in another discussion here on Connect.

> Groups > Digestive Health > MCTD
https://connect.mayoclinic.org/discussion/mctd-265a2b/

What type of infusions are you looking at? I'm sure there are other members that may be able to share their experience with you.

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@suziropiequet

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?

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I had blood tests done to confirm autoimmune. And it did. They gave me prednisone and cellcept to address autoimmune. They were tapering me 3rd week of feb but it seems my immune system got strong and attacked my lungs again giving me this stuborn lung infection. So a mild asthma is acting up. “I’m a difficult case” bec I have so many allergies and side effects to meds. I almost gave up cellcept bec it was causing me unbalance. Then was recommended to take it at bedtime and it worked. Someone in this thread mentioned Bactrim. I’m allergic to Bactrim

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@samandhuck

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!

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I was also diagnosed “undifferentiated mixed connective tissue disease.” But what is hitting me most now is autoimmune attacking my lungs. I’m allergic to Bactrim . Just started on this journey June 2018 when finally they diagnosed me with autoimmune and cellcept and prednisone gave me a better life . Though when flare ups come, it’s bad .. but not as bad as before when they did
Not know yet that I am autoimmune. So there was definitely a progress there

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@noahs

I was also diagnosed “undifferentiated mixed connective tissue disease.” But what is hitting me most now is autoimmune attacking my lungs. I’m allergic to Bactrim . Just started on this journey June 2018 when finally they diagnosed me with autoimmune and cellcept and prednisone gave me a better life . Though when flare ups come, it’s bad .. but not as bad as before when they did
Not know yet that I am autoimmune. So there was definitely a progress there

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Hello everyone. I know how difficult it can be and if we are allergic to a drug we need, it's even more difficult. I was diagnosed with an auto-immune disease – sarcoidosis – in 2004. As I read all of these posts, I am not seeing that anyone is getting a lung biopsy, or am I wrong?

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@estrada53

Hello everyone. I know how difficult it can be and if we are allergic to a drug we need, it's even more difficult. I was diagnosed with an auto-immune disease – sarcoidosis – in 2004. As I read all of these posts, I am not seeing that anyone is getting a lung biopsy, or am I wrong?

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I got a lung biopsy that diagnosed me with BOOP PNEUMONIA!

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Hi John, since your infections are mostly in your lungs, I wonder if any of your doctors have mentioned using inhaled steroids and inhaled antibiotics (like tobrimyacin). These have less impact on tour body systems and focus on the main infection/weakness. I also wonder about immunotherapy helping you, like IV immunoglobulin. Have your IG levels been tested?

Just more food for thought for you… Wishing you the best, what area of the country do you live in

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@ckeys

Hi John, since your infections are mostly in your lungs, I wonder if any of your doctors have mentioned using inhaled steroids and inhaled antibiotics (like tobrimyacin). These have less impact on tour body systems and focus on the main infection/weakness. I also wonder about immunotherapy helping you, like IV immunoglobulin. Have your IG levels been tested?

Just more food for thought for you… Wishing you the best, what area of the country do you live in

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Do some research on stem cells and lung function. There have been some cases where stem cells have healed lungs… Wish you the best…

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