Autoimmune attacking my lungs

Posted by noahs @noahs, Mon, Mar 11 2:59pm

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 @noahs, welcome to Connect. I'm sorry you are having to deal with so much physical and psychological pain. I know it is more difficult when you feel you are alone. I did a search and found a few members discussing interstitial pneumonitis in the Lung Health group. @ppeschke, @mec1944, and @merpreb have discussed interstitial pneumonitis in posts and may have some suggestions for you.

Has your doctor been able to offer any treatment suggestions for you?

REPLY

Hi john … thank you for welcoming me to the Mayo support group. I just came from my pulmonologist . My symptoms and complaints seem to stem from the tapering off of my prednisone. Last Feb 18, when I was well, my autoimmune doctor decided we start tapering my prednisone from 10 mg to 7.5 mg for two weeks . Then to 5 mg which is my dosage now. And yes my health problems started about then. So my pulmonologist brought me back to 10 mg. I did not think of this but when my pulmonologist told me this today I was not surprised since I read in the varied groups of Mayo Connect what other patients have experience when prednisone is tapered off. And each patient has his/her own “style” of tapering off that suits one’s body. I’m glad I joined this group . It helped me understand my illness better …even if I have been googling it a lot. I found very helpful the link on “five things I wished I knew before I had chronic illness “ . I identified with it a lot and did not feel alone in my journey

REPLY

And yes John … I also follow lung disease, bronchiectasis, and interstitial pneumonitis … which I have

REPLY
@johnbishop

Hi @noahs, welcome to Connect. I'm sorry you are having to deal with so much physical and psychological pain. I know it is more difficult when you feel you are alone. I did a search and found a few members discussing interstitial pneumonitis in the Lung Health group. @ppeschke, @mec1944, and @merpreb have discussed interstitial pneumonitis in posts and may have some suggestions for you.

Has your doctor been able to offer any treatment suggestions for you?

Jump to this post

Hi John … I was reading the Prednisone discussion. What is PMR?

REPLY
@noahs

Hi John … I was reading the Prednisone discussion. What is PMR?

Jump to this post

@noahs PMR is polymyalgia rheumatica which my rheumatologist described to me in layman's terms as arthritis all over the body.

REPLY

Hi Everyone! My 1st post on Mayo. I was finally diagnosed with Interstitial Lung Disease 2/19, and Sjogren's Syndrome 3/5/19, an autoimmune disorder. The symptom I noticed first was bouts of achy muscles over the years, was diagnosed with "fibromyalgia" in 2005, and now Sjogren's started in on my tear ducts and salivary glands. "Dry eyes, dry mouth." I see an eye Dr next week who will test my tear production, and then a drop of dye to show any "dry eye" damage. Vision is also blurry. Sjogren's has scarred my lungs. Been a lung patient since 2003, Emphysema. Started taking generic Cellcept last week, which is supposed to calm down the inflammation in my lungs. I've also been on Prednisone since mid-Sept, 40 mg, tried tapering once, trying again was @ 25, descended into Prednisone Withdrawal Hell, returned to 30. MUCH better! That's another page though! (and I have a great Prednisone Meltdown Story to share there! Talk about rude behavior!)

REPLY

Hi Noah, I have the same issues as you. I just posted an introductory message here that will tell a bit about my pulmonary journey. Stay strong! Suzi

REPLY

Hello @suziropiequet, welcome to Connect. Thank you for posting your symptoms. I see you have met @noahs who shares similar symptoms and diagnosis. It's good to know you are not alone. Hoping others will join your discussion and be able to provide more information and suggestions. There are a couple of discussions that may be helpful here:

> Groups > Lung Health > Severe COPD and Interstitial Lung Disease
https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/

> Groups > Digestive Health > Prednisone
https://connect.mayoclinic.org/discussion/prednisone/

Are you trying to taper off of prednisone?

Liked by Suzi R

REPLY
@suziropiequet

Hi Everyone! My 1st post on Mayo. I was finally diagnosed with Interstitial Lung Disease 2/19, and Sjogren's Syndrome 3/5/19, an autoimmune disorder. The symptom I noticed first was bouts of achy muscles over the years, was diagnosed with "fibromyalgia" in 2005, and now Sjogren's started in on my tear ducts and salivary glands. "Dry eyes, dry mouth." I see an eye Dr next week who will test my tear production, and then a drop of dye to show any "dry eye" damage. Vision is also blurry. Sjogren's has scarred my lungs. Been a lung patient since 2003, Emphysema. Started taking generic Cellcept last week, which is supposed to calm down the inflammation in my lungs. I've also been on Prednisone since mid-Sept, 40 mg, tried tapering once, trying again was @ 25, descended into Prednisone Withdrawal Hell, returned to 30. MUCH better! That's another page though! (and I have a great Prednisone Meltdown Story to share there! Talk about rude behavior!)

Jump to this post

@suziropiequet Welcome as John said I share dry eyes,dry mouth fibromyalgia I opt for naturel products theres to many side effects from Dr,s For years Ive been taking Fibro Malic more magnesium in it for fibro ,Eye Dr has me on drops akso glucoma dropd also I have Macular Degeneration I have found Golden Milk helps with inflamation

REPLY
@johnbishop

Hello @suziropiequet, welcome to Connect. Thank you for posting your symptoms. I see you have met @noahs who shares similar symptoms and diagnosis. It's good to know you are not alone. Hoping others will join your discussion and be able to provide more information and suggestions. There are a couple of discussions that may be helpful here:

> Groups > Lung Health > Severe COPD and Interstitial Lung Disease
https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/

> Groups > Digestive Health > Prednisone
https://connect.mayoclinic.org/discussion/prednisone/

Are you trying to taper off of prednisone?

Jump to this post

Hi John, thanks for your welcome. OK..the Prednisone journey…long story short, had a very sudden, severe exacerbation start on 9/11/18. Needed 4-5 liters O2 as opposed to being off it most of the day, wear at night. My Pulm had me get a CT scan, and started me on 40 mg Prednisone. Since my Pulm "didn't know what was wrong with me" last Sept, he just had me stay on Prednisone and hope this thing went away or something. We tried tapering off but when it got below 20 mg/day…YUCK! Sore muscles etc. Was in hospital 6 days Jan + 10 days Feb. Started tapering after hospital, 5 mg/week, was down to 25 mg/day…the past 4-5 days were just awful! Sore muscles, skeletal, connecting tissues, etc. all going nuts. Finally I got my Pulm to take me back to 30 mg as I was feeling so rotten. He said we'll try a slower taper when I'm "feeling better." Last fall and winter are all a blur. Been on Prednisone for 6 months now. A specialist at Loyola Medical in Chicago was able to diagnose me in about 15 minutes, Sjogren's Syndrome. Taking generic Cellcept now. I see the specialist and a Rheumatologist next month.

REPLY
@suziropiequet

Hi John, thanks for your welcome. OK..the Prednisone journey…long story short, had a very sudden, severe exacerbation start on 9/11/18. Needed 4-5 liters O2 as opposed to being off it most of the day, wear at night. My Pulm had me get a CT scan, and started me on 40 mg Prednisone. Since my Pulm "didn't know what was wrong with me" last Sept, he just had me stay on Prednisone and hope this thing went away or something. We tried tapering off but when it got below 20 mg/day…YUCK! Sore muscles etc. Was in hospital 6 days Jan + 10 days Feb. Started tapering after hospital, 5 mg/week, was down to 25 mg/day…the past 4-5 days were just awful! Sore muscles, skeletal, connecting tissues, etc. all going nuts. Finally I got my Pulm to take me back to 30 mg as I was feeling so rotten. He said we'll try a slower taper when I'm "feeling better." Last fall and winter are all a blur. Been on Prednisone for 6 months now. A specialist at Loyola Medical in Chicago was able to diagnose me in about 15 minutes, Sjogren's Syndrome. Taking generic Cellcept now. I see the specialist and a Rheumatologist next month.

Jump to this post

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
Lung
Disease but
Mayo Connect gives me a view from a personal oatient’s viewpoint. Hope to hear from
You in this group.

REPLY
@noahs

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
Lung
Disease but
Mayo Connect gives me a view from a personal oatient’s viewpoint. Hope to hear from
You in this group.

Jump to this post

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

REPLY
@suziropiequet

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

Jump to this post

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

REPLY
@suziropiequet

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

Jump to this post

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.

Liked by lioness

REPLY
@suziropiequet

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

Jump to this post

@suzi … I wonder what is SSA Antibody ?

REPLY
Please login or register to post a reply.