I have alveolitis, asthma and now interstitial lung disease (ILD). My doc has now diagnosed pulmonary hypertension. My doc can find no cause for this. They did a bronchoscopy and my lungs were so inflamed they couldn’t take a sample for fear my lung would collapse. I desaturated during op and had to be brought back.
I read that sjogrens can cause ILD and pulmonary hypertension is an extension.
He now says it could be autoimmune or something else…
yes, I’m being transferred to a new lung doctor, not sure if I need a heart Dr too
Does anyone else suffer this with sjogrens and what is your doctor treating you? Thank you.
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Hi, I am sorry to hear you are having this battle with ILD. I have Sjogren's and ILD too. The ILD kicked for me last April/May after getting COVID. When I had COVID I was fine but it stimulated my immune system and brought two more autoimmune diseases into the spotlight as my body started attacking my lungs, then muscles and joints. At first my lung specialist did not consider autoimmune causes as he did not think of Sjogren's as a possible cause. He picked up on the auto immune cause when he got access to a blood test I had 4 years earlier that showed I was Jo1+. (I have no idea why my GP had the test done or what he concluded from that result as he retired). He has diagnosed me with Anti-synthetase Syndrome (also known as AntiJo1 Syndrome and is so rare I can't link this condition to my profile, like they have no record of it at all) and Dermatomyositis, which are both frequently linked to ILD.
Treatment is a long trial and error process. Less than a year ago the medication I was "on", was artificial tears. Now I am told I will be on a list of medications for life. I am on meds for the joint pains as well, but the treatments for my lungs are Prednisolone, (daily which I have been on now since May last year), Tacrolimus (which is normally given to lung transplant patients), Pantoprazole to try to protect my stomach from all of this stuff, Resprim Fort antibiotics twice a week to give me some protection while my immune system is being shut down, monthly transfusions of immunoglobulin, and the most resent treatment, which has shown the most significant improvement for me is a six monthly intravenous immune suppressant call Rituximab. It really helped with my lungs, myositis (muscle fatigue etc) and my joint pain too, but it is wearing off a bit and I am not due for more until April.
Along with the lung meds, I take Plaquenil (immune suppressant) for the joint pain, Methotrexate (a chemo pill that my lung doc is not a fan of because it can cause lung disease but my joint pain was completely debilitating so my Rheumatologist felt it was justified to try), a Trump style covid prevention injection as Rituximab makes you more susceptible to COVID, a few supplements to replenish some know deficiencies caused by my treatments, I also got a pulmonary embolism during all of this so I am on blood thinners as well. And some of the medications cause sun sensitivity and increased risk of cancer, so a lot of sunscreen with hats, long sleeves and pants.
I hope your doctor can find the right combination for you asap.
They tell me all progress is slow, and not to expect to get better quickly. I know how painful and frustrating it is.
thank you, I’m sorry that you are going through all of this. My current doc has no idea what to do with me so I’m now waiting on a referral to a different doctor.
Thank you. it’s not a new thing so I don’t understand why doctors are so useless? My lung specialist failed to suspect heart involvement, my rheumy found it.
Scans and X-rays. But it took a few years for a Dr to interpret them. Some drs lied to me. I now have a great heart surgeon looking after me. Delays in giving proper info and medical treatment caused heart failure and kidney disease. Don’t be afraid, demand the truth.
Yes, I have ILD and PH. I also have Non Hodgkins Lymphoma. All of these health issues put me Into Secondary Sjögrens. I was dx with ILD 20 yrs ago and my Pulmonologist told me it was due to Sjögrens. Sjögrens has caused lots of health issues for me thru the years. Last year I had a Perotid Gland Absess.
I’m 73 yrs old and started my Auto Immune dx with PBCholangitis 30 yrs ago.
I’ve been on Imuran for the ILD for yrs. Was off of it for a couple yrs. To have Vac for Covid. I wasn’t off it in enough time so it did kill the first half of the first vac. I’m back on Imuran now and at a clearly higher dose. I’ve had 3 cases of Pneumonia this year alone. Lots of trips to the ER. It’s been a real mess this year alone.
Find a Good Pulmonoligist and also a Rheumatologist that would work together. A Rheumatologist understands AI diseases better than most medical Professionals as they treat a majority of the AI diseases. They will help with Sjögrens as well. You will also need to have a good Cardiologist to watch the PH.
Welcome to the dark side of Auto Immune diseases. It’s not easy winding your way through AI.
Yes, Sjögrens can cause ILD. Yes it is Auto Immune. Yes you do need a Cardiologist. Pulmonary pertains to the lungs. Hypertension pertains to the heart as in (High Blood Pressure). In your case the High Blood Pressure is connected with the Blood in the lungs and the heart.
This is considered Secondary Sjögrens. When it affects more the one organ. Auto immunity is a very complicated issue. They are called Baggage diseases for a reason. The immune system has gone on Automatic and is systematically attacking your organs. This attack is above the featured operation of the underlying System. I’m saying that the auto immune system has taken control of your body’s “immunity”.
If you were to have a transplant the Autonomous Immune system is still in control of your body’s attack. So eventually the immune system would attack the new organ.
You must consider the Auto Immune attack as the “Big Umbrella” over the Operating Systems of your Body’s Major Organs.
Sjögrens caused Non Hodgekins Lymphoma in my case as well. I’m currently not on a maintenance treatment but with all the Auto immune health issues going on I. My body I’m being carefully monitored by my oncologist as well.
Think “Domino effect”.
Sorry for being so blunt, but having Auto Immune issues is a very Complicated Medical issue.
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