PBC and Granulomas

[Rebekahw74]

In my early 30’s a scan showed several granulomas, 1 in my lungs, spleen, liver, etc…

I was told it was probably caused by an undiagnosed case of histoplasmosis at some point in the past.

Fast forward I have several more in my lungs. My Dr just shrugs. My cardiologist asked if I had a pulmonologist. My regular dr sees it as no big deal.

Then recently I came across this article:

ncbi.nlm.nih.gov/pmc/articl...

Anyone else have granulomas?

If so is there a treatment?

Any reason to push for a referral to a pulmonologist?

[Lu11]

This article is great, thank you! My mother who died from PBC had COPD. Even though my enzymes are normal, I am AMA M2 positive and have been having problems with asthma, which I never had before. PBC and lung disease are linked in my opinion.

[Ancolie]

I agree with Lu11. I have PBC, was hospitolised for 2 pneumonias and am now treated for sever asthma. I am now followed by a pulmonologist and the last CT Scan for a acute diverticulitis showed the begining of COPD. But my hepatologist nor my pulmonologist never told me that they were related. But I think so. You should ask to see a pulmonologist. Sorry for my english sinc I am french.Wish you the best,

Ancolie,

[Michi1]

My ex has sarcoidosis. There is no treatment other than long-term prednisone, and other than knocking down inflammation and causing horrible side effects, there is no real evidence that it helps.

This article with some of the recent things I've seen linking PBC to a disease-related trigger almost makes me wonder if I caught PBC from him. Joking not joking. Wonder if the researchers have looked at that. Anyone else here have a spouse or someone they're close to who has sarcoidosis? 🤷‍♀️

[Tidepools]

I would suggest, if only for your own piece of mind, that you do pursue a referral to a pulmonologist.

[Gurnis]

I had these two years ago in my lungs and had a bronchoscopy and the doctor couldn’t figure out why I had them. Long story short, they cleared up a few months later and had no problem

[Turquoise2075]

I don’t know if this helps, but I was having quite a lot of difficulty with stiffness in my lungs for about a year and a half following PBC diagnosis. I was experiencing major shortness of breath and episodes where I could feel something just wasn’t right in my lungs.

I read quite a bit about lung involvement with PBC. Half way through last year I started somatic-based therapy for post traumatic stress I’d been through. Progressively the stiffness in my lungs began to ease as my autonomic nervous system came back to equilibrium.

I just mention this as autonomic dysfunction has been identified in PBC as well as various lung disease manifestations that are known to co-occur with PBC.

I guess seeing a pulmonologist may just help to rule out any concerns if you want peace of mind. I have a relative with Sjögren’s syndrome which often occurs with PBC and she also has COPD. I feel that all these things are often part of the same processes in the body.

[KBH8 in reply to Turquoise2075]

Hi there, I have jad sudden Shortness of breath and apnea the last 2 months. I have found somatic therapy. .......EFT tapping improves my symptoms. I believe some trauma I wasn't aware of came up with my recent intense stress about my health and dealing with western medicine. (I got diagnosed with lung nodules from Histoplasmosis). I have hired a therapist to work with me on this. It would be interesting to hear more about your experience. It is scary when it feels like breathing is a chore!

[Turquoise2075 in reply to KBH8]

Hi KBH8,

That’s great the EFT tapping has helped. My breathing is much improved now. I’ve been doing something called Somatic Experiencing with a psychologist. It has helped tremendously. I have complex trauma from both childhood and adult experiences. I feel sure in my case the development of an autoimmune disease in itself is linked to trauma. I’ve had lifelong autonomic dysfunction which seems to have lead to a number of things going wrong in my body, PBC being one of them. The breathing issue for me has a strong link with a chronic freeze response in my nervous system which involves an involuntary state of shallow breathing where it’s like I’m hardly breathing at all. That also seems to happen with some people with PBC and the associated lung conditions that can occur with it. I know what you mean about it being scary when breathing is a chore. It is a great relief when it becomes easier again. Take care and I hope you continue to improve. I looked up histoplasmosis as I hadn’t heard of it before. All the best!

[Kathygirl in reply to Turquoise2075]

I have the exact same thing......involuntary state of shallow breathing and it is like I am not breathing at all. Issues with sleep too.....my boyfriend filmed me stopping breathing 3-4 times in 5 minutes!! It feels very much to me like what you describe.....a chronic freeze response from somewhere in my past (and also with this histoplasmosis stuff ..... they initially told me it looked like some form of Lung cancer.) It terrified me. I do agree also that autoimmune diseases can often be linked to trauma (maybe more often than not but I am no expert). I hadn't heard of PBC until today. I looked it up. There are so many diseases these days. Too much trauma, stress, toxins in our world. Thanks for your response!

[PBCNewbie32]

Thank you so much for bringing this information to the forefront!! I have PBC, and I also started having asthma like issues and symptoms out of nowhere. In fact, I just saw a pulmonologist yesterday, and he told me he thought my asthma was linked to my weight and GERD after meeting me only once. Granted, he may have a point, I am willing to bet my bottom dollar on the correlation of PBC and lung disease 100%. I am going to show him the article and place everyone on alert, as this is definitely something to pay great attention to and look out for. Thanks again, and God bless you on your journey!!

[Lu11]

My Mom had serious lung problems and developed asthma and COPD towards the end of her PBC battle. PBC affects much more than just the liver. Doctors who dismiss this don’t know about PBC…and there are so many that don’t know, it’s scary. I think having a pulmonologist is a good idea!

[Readlots]

Thanks for sharing Rebekah, I have Alpha 1 antitrypsin deficiency which is a genetic condition affecting both liver and lungs. I also have PBC so I’ll be showing my consultant this report.