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PF - Nonspecific Interstitial Pneumonia related to autoimmune
Hi. I’m 36yo Asian female diagnosed with NSIP 2 years ago related to my autoimmune disorder, which my doctors still unable to find out which type of disorder as they think it hasn’t fully blown out yet. It’s a condition under Interstitial Lung Disease / Pulmonary Fibrosis. I was on 40mg prednisone for about 10 months in 2016 and stopped for about 9 months in 2017 when my condition was stabilized. Then I had an episode of pneumonia during winter in Dec 2017 that got me hospitalized twice, and has made my condition worse with mild pulmonary hypertension. I became more breathless even short walks to the bathroom and during showers.
I’m now back in my own home country where the weather is warm but since the pneumonia, I have started back on 40mg prednisone in Feb and last month, I was also given 500mg Cellcept daily (2 tabs a day) as a steroid sparing agent so I could reduce my prednisone sooner. I’ve been advised by my docs not to travel for work, so I can now only work from home. So I’m now on these two main medication along with my other vitamins.
And I’m also on 24/7 oxygen now too. But it doesn’t really help when I’m moving because of my limited lung capacity that I can’t inhale very deep. What makes me breathless is when I cough really hard from my itchiness of my throat and whenever I needed to expel my mucus. And when I get breathless, my nails turn purple. Both my lower limbs occasionally get numb too and turn pale, which my doc tells me that it’s because I dont have enough oxygen in my body that can cause that to happen.
What scares me now are showers and toilet breaks. There are always risks of getting choked up and out of breaths if I couldn’t hold my coughs. I’ve been reading from researches and posts from others that mild exercise and breathing exercise helps. As much as I want to do so, I don’t like the feeling of coughing and seeing my SpO gets to as low as 80% while doing just slow walks of treadmill and deep inhalation makes me cough.
My question is - is there anyone out there with similar diagnosis (NSIP with autoimmune) and how do you guys cope with your daily activities? Especially in showers, exercises, any kind of life hacks of people like us?
I’m also trying to get onto the transplant’s waiting list and will be meeting my new lung team soon in a few weeks’ time to get the transplant conversation started. In just two years, my condition has deteriorated pretty fast and it’s worrying. Hope to hear from anyone!
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I have been on the maximum dosage of mycophenolate, 3000 mg daily for almost 2 years. I quickly tapered up to that dosage in little over a month. For the first 6 or 7 months of this new med, I was also on 40mg of prednisone daily. I then tapered off of prednisone and have been prednisone free since May of 2024. In case you find it helpful to know, my diagnosis, which is clear as mud to me, goes as follows: I am a 60 y.o. female with past medical history significant for familial pulmonary fibrosis, non UIP pattern interstitial lung disease, suggestive of organizing pneumonia or NSIP type pattern, but without evidence of autoimmune disorder, but positive ANA (Rheum confirmed). Although I am not listed at this time, I beleive that my condition will worsen and that I will be listed for lung transplant surgery. Genetic testing has not revealed a specific mutation or disease.
In August of 2023 when I first began taking prednisone and mycophenolate in the amounts stated above, there was diziness on bending or stooping, muscle cramping, lack of patience, weight gain, swollen face, and sleeplessness. Today I am certain that only dizziness was related to the mycophenolate. The other symptoms tapered off in lock-step as I tapered off of prednisone. I have learned to come up slowly after bending/stooping, and not to jump out of bed too quickly. I consider these side effects to be very minor inconveniences. Good luck!
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2 ReactionsHello,
I just started the regiment of prednisone and mycophenolate for NSILD.
I am overwhelmed by reading all the serious side effects of myco. I know the list is long on most meds but the side of effects for this drug looks dangerous and toxic. Has anyone of you had serious side effects? If so, what are they and what have you done about them? Is there an holistic approach to this disease?
I also was recently diagnosed with inflammatory NSIP with underlying autoimmune issue recently confirmed. I started on 60mg of prednisone which quickly led to improvements in 02 levels, but after the autoimmune piece(pl-7 antisynthatase syndrome) was confirmed they asked me to start 500mg of cell crept and taper up to 1000mg daily while I taper down the prednisone. I just took my first dose of cell cept today. I too was a little concerned but I figure the need to keep my ILD from progressing takes priority over the side effects. I’ll try to swing back for a condition update as continue the drug treatment.
Thank you for this comment, it’s encouraging to hear your doing well on the Mycophenolate. I just started cell cept (as I taper down the Predinisone) today and not sure how my body is going to respond. They’ve asked me to get labs once a month to make sure there’s no collateral damage. Are you takin calcium and vitamin d supplements? How have you adjusted your life to keep from getting sick? I travel frequently for work and I expect to mask up and practice good hygiene. I’m most concerned about unknowingly being around sick people during the fall and the holidays.
The only supplement I take is Vitamin D. I have too much trouble breathing to mask even in crowds. While I was still on prednisone (between 10 and 40mg) I did catch colds easily. Without prednisone, I have only been sick with a respiratory virus once approximately 14 months ago. I caught that virus from my husband. It took several rounds of varyious antibiotics to recover. I have gradually learned to relax a bit. I hug friends and family. They know to keep their distance when sick. I eat at restaurants multiple times weekly--I always have and I don't think it ever resulted in catching a virus for me. I regularly attend social gatherings and meet with friends. Today I attended a funeral with about 200 other people. I am more cautious in cold/flu/covid season and watch for viral spikes in my community. At those times I do things like avoiding crowded movie theaters. If I were on an airline during cold/flu/covid season, I might consider a mask, especially if it wasn't difficult for me to breathe through. I am ever-alert to someone sneezing, coughing, or blowing a runny nose. I associate pharmacies with sick people so I use one that delivers or has a drive thru. I do my own grocery shopping at my neighborhood store, but I let Walmart and Amazon deliver most everything else. I've had pretty good luck staying healthy just by keeping strangers out of my personal space whenever possible and using good hygiene.
Worrying is only natural, but remember to think positive, and be patient while finding your groove.
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2 ReactionsThank you! This encouraging! I have well meaning firends and relatives in my life who are all over the spectrum in terms of "advice" on what I should and shouldn't be doing to keep from getting sick (of course I knew that came with the territory as soon as I choose to be transparent with my diagnoses). I think one of the big milestones for me will be my next HRCT and Pulmonologist appointment in Nov. Hoping for the opacities to clear up and some recovery in the PFT's where maybe we can say I'm in remission and I can go off this stuff!
Hello and thanks for all your helpful information and transparency.
I just research more about my ILD and read that the life span of this disease is 3-5 years from diagnosis. Very disconcerting. Any thoughts about that??
Hello. Just checking back with you about side effects.
How are you doing? I'm having the usual side effects like muscle cramp[ng, diarrhea, headaches, vision bluriness,
and still shortness of breath. My doc tells me that I may have to be on mychophenate for life. Not good news.
I'm tapering off of Prednisone for the next two weeks and hopefully will discontinue. Having weekly blood test is a nuisance but I'm happy to be monitored.
I have interstitial lung disease too but mine is due to rheumatoid arthritis.
I had pneumonia more than 2 dozen times over a 2 year period. Each time I was hospitalized for at least 5 days. Finally, my Drs decided to go in & take a look. They found I had interstitial lung disease & a really bad Empyema. Broke ribs in order to remove all the infection from my pleural space. I was on a respirator for 4 1/2 weeks & in the hospital for 7 1/2 weeks. I’m very lucky to have had such a wonderful medical team.
They had me on prednisone too, 60mg a day for several months. I’m only on 5mg per day now & I take Azathiaprine specifically for my lungs. Haven’t been hospitalized for lung issues since.