Does anyone have experience of lung problems as a symptom of GCA?

[angiek]

I have had PMR for three years, and am almost off Prednisolone with no return of the original pre-diagnosis symptoms. I have been in hospital twice since the end of July with ‘community acquired pneumonia’ ….tho I have never had any chest/breathing problems/weakness in my life and am still very careful to wear a mask/sanitise trolley etc when shopping and have not ventured into crowded places at all. The first hospital admission was after a visit to GP because of a slight cough, but mostly a pounding headache. Blood tests showed incredibly high ESR and CRP readings, so I was admitted and given iv antibiotics for 3 days. CT scan showed lung problems consistent with Pneumonia. Discharged on day 4 as blood markers were returning to normal. Second hospital admission a few weeks later was because I still had a cough and headache, but mainly because I had a return of Atrial Fibrillation, and my usual meds weren’t controlling it. ESR and CRP readings again very high. Again 3 days iv antibiotics and discharged with 7 days oral antibiotics. Both times I mentioned the headaches (temples and across front of head) and queried a link with PMR/GCA and the consultant felt the pulse in my temples and said it was normal, so not likely? First discharge letter said Vasculitis screening result pending. Second time I asked about this result and was told they would chase it up. I am awaiting a follow up appt with Respiratory consultant, and X-ray, I know my lungs are not functioning properly still, and the temple headaches are more or less constant…tho are lessened if I take regular paracetamol. Incidentally when I was first diagnosed with PMR my ESR and CRP markers were totally normal, diagnosis was made with my quick reduction of symptoms on Prednisolone.

Just wondering if anyone else has had GCA or another vasculitis condition with out of the blue ‘pneumonia’ being a main symptom?

Thanking you all in advance.

[SnazzyD]

Hello, what a journey you’ve had. It might be worth asking about the possibility of a sign of autoimmune activity that affects the lungs because there are conditions that cause lung problems and once we have one condition we are more likely to have another. Even something like lupus can do this. Have they done a Covid antibody test too? The link has a list of vasculitis conditions some of which affect the lungs.

nhs.uk/conditions/vasculitis/

[angiek in reply to SnazzyD]

Thankyou for such a quick reply! Blood was taken on last admission to test for autoimmune problems, including HIV!? ?They said results would take up to three weeks -which is now. I have apparently got NO covid antibodies …so would appear I definitely haven’t had covid and the double vaccine ( Feb and May) hasn’t had the desired affect, would this be due to being on Prednisolone- albeit a low dose? It was just reported on my discharge notes, wasn’t explained to me, and I was home before I read it!I’ll have a look at the link, Thankyou.

[SnazzyD in reply to angiek]

I had no antibodies from having Covid, the first test being about 7 months later. However, I hold on to the fact that they didn’t check all the parts of the immune system so all may not be lost. Sounds like it might be worth chasing those results and asking for a list of what was checked. I had that, when they said they were checking lots of other things but didn’t feel it necessary to tell me what.

[HappyDiamonds]

Hi, I had severe pneumonia in bottom of both lungs when I was first diagnosed with GCA and my CRP was just under 300 although I didn't have a cough. I was admitted to hospital where the pneumonia was discovered but it was some time later that GCA was finally identified. I was put on 3 different antibiotics at the same time and it took months to clear up and many months to completely recover but fortunately no return. I do hope you manage to get the help you need to make you feel better soon.

[angiek]

Thankyou for your reply. Sounds very similar- and although I did have a cough it was only occasionally and it wasn’t what I would assume one to think they had pneumonia. I wonder if you know how/why GCA was diagnosed rather than one of the other conditions that SnazzyD linked above? Did you see a rheumatologist or was this diagnosed by the respiratory specialists- as my Rheumy signed me off in January to leave me to finally get off steroids on my own, so now I’m only likely to see the respiratory specialist in the next few weeks/ I wonder if I can ask to go back to the rheumatologist ?

[HappyDiamonds in reply to angiek]

I was feeling really ill for weeks but had no idea I had pneumonia and even a chest x ray didn't show it. One morning I got up and couldn't breathe so was taken to hospital by ambulance and admitted, the pneumonia showed up on a scan. Although I had every symptom of GCA for about 8 months, jaw claudication, night sweats, head aches like no other, 3 stone weight loss, scalp sensitive, and visited my GP numerous times I was treated for trapped nerve in neck. Eventually I was referred to Ambulatory Care at Hospital for the day as although my CRP lowered when treated for the pneumonia it was still very high.That day I had loads of tests including an MRI, was examined by a Consultant Rheumatologist who " got it" in 2 seconds and it was then confirmed by ultrasound. Started on 60mg Prednisilone and had my first nights sleep. That was May 2021 and its not all been straight forward but Im really very very well looked after by the Rheumatology Department at my Hospital.I honestly can't see why you shouldn't be able to go back to your Rheumatologist for a review. Would only add though that Paracetamol would not have any effect on GCA pain, my GP threw everything at me including morphine for the supposed trapped nerve and nothing worked until I started Pred. Please keep the pressure on the medics and don't let them ignore you so you fall through the cracks. All the Best

[angiek]

Oh dear it seems that you had a real struggle to get your diagnosis, much like my original PMR diagnosis, and reading statements from members of this group that appears to be very common! I’m glad you are on the right track now. I’ll see what happens in the next few days re the test results which should be back, then get back in touch with my Rheumatologist.