Thickening of the lining of lungs, GPA diagnosed 2008

[Beaver]

I had a telephone call yesterday from my consultant, following a recent CT scan. Apparently the scan shows thickening on the lining of the lungs, and I now require further body scans. After which they will decide what further treatment I should have. I have GPA which was diagnosed 2008, have had several flare ups over the years. Managed on Methotrexate now for a long time, until a recent flare where I had Rituximab although only half dosage due to low blood levels. After the booster I have had a few aches in joints where I had past injuries in my life, knee, ankle & back, generally feeling well at the moment and thought this disease was going the right way. That’s the surprise in the CT scan results, you just don’t know what’s going on inside your body! Just wondering if anyone else has had this diagnoses ? Infusions were mentioned not looking forward to going back to those days, but guess there some of you on this site worse off than me. Take care everyone, especially in these difficult times.

[John_Mills Volunteer]

If there is lung involvement with GPA it often leaves scarring of the tissues which causes thickening. I have scarring of the lungs which has caused me breathing problems since diagnosis 20 years ago. If there is inflammation of the lining of the lungs it could indicate the GPA is active and should be investigated and a treatment plan should be discussed with you.

Refractory GPA is often difficult to manage and sometimes combinations of drugs can be used to get it under control.

[Beaver in reply to John_Mills]

Thanks for your reply, guess over 20 years you have also had a combination of different drugs that have kept you alive. Thankfully ongoing research means that they are able to tweak treatment to suit each individual, and hopefully get our disease into remission once again. Stay safe, and a big thank you for all the help and support you give to all of us. Ian

[cazy-g in reply to Beaver]

I have G.P.A diagnosed 11 years ago upper respiratory and lung lesions .Had all the regular treatments but Rituximab was the most effective .had many pulses including full and half doses .The lesions are now covered over however lungs are scarred and am breathless at times .i would definately have further rituximab if nessesary due to success of treatment and few side effects .Good luck whatever you decide .

[Beaver in reply to cazy-g]

Hi thanks for taking the time to reply, I will definitely have Rituximab if I am able, as I have heard some positive things about it. Just need to get my blood counts up somehow !

[dphu]

I was on Methotrexate from 2020.In August this year my dose was increased to 20mg weekly. After about 2 weeks I became suddenly debilitated and unable to breath. I spent 5 weeks in hospital. I had many Covid symptoms but I did not have Covid. After two and a half weeks I was diagnosed with 'Methotrexate Induced Pulmonary Fibrosis'. My lungs are still very compromised but I have noticed that since stopping the Methotrexate other smaller annoying symptoms have ceased or improved.

Perhaps stop the Methotrexate for a while? It's now on my allergy list!

[Beaver in reply to dphu]

Sorry to hear that you have had a very rough time recently, take care.

[Starray]

Hi. I have GPA and am on six monthly Rituximab. I didn’t have thickening of the lining of the lungs but had multiple clots instead. I do feel that the Covid booster has aggravated my GPA though despite being on Rituximab. Without Rituximab I would be in a sorry state. I e never been on methotrexate as consultant deemed it wouldn’t be strong enough. I hope Rituximab works for you. X

[Beaver in reply to Starray]

Thanks fingers crossed they allow me to have it, take care

[jofrable]

took Methotrexate for a limited time felt effects unremarkable and side effects unpleasant and unnecessary.