Hi everyone. I updated my profile to include my most recent flare/infection, but wanted to briefly share that info. with others who may experience respiratory issues with GCA. I had another bad "flare" that began on Feb. 4th at the end of a two week cruise. Again started with a sore throat, then respiratory, then severe cough. Negative for covid, pneumonia, flu, heart. Very similar to past episodes. Upped my pred. by 10mg, then 20 on advice of rheumy, but ended up needing 40mg pred. to get it under control, and that took a whole month. The question is, "Are these GCA flares, or some other kind of infection affecting my lungs? I do not get a fever, nor other typical GCA symptoms as I had originally, like scalp sensitivity, headache, fatigue. This time my doc ordered a CT scan of my lungs. This revealed mild bronchiectasis, which is widening of the airways which carry air in and out of the lungs. This can lead to bacterial infections, which leads to the severe cough. Since I never had this before GCA, and since part of my initial symptoms were respiratory, it's possible that my initial onset of GCA contributed to this lung damage. Once damage has been done, you are more susceptible to additional infections. Next up is to see a pulmonologist, and to try more of an interdisciplinary approach.
At this point, should I develop symptoms as in the past, we are going to try and first treat it as bronchiectasis, not a GCA flare. I have a prescription for a stronger antibiotic which I will begin to take as soon as I suspect an onset. Initially I will not increase steroids, and I am slowly reducing to 5mg. I am continuing on Actemra. Hopefully the antibiotic will work, if/when need. If not, we're back to the possibility of it being inflammation caused by GCA. We'll see where it leads moving forward.
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Preacherball
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My bronchiectasis was diagnosed 10 years ago. The cough has never left me since. I carry antibiotics all the time and take a course as soon as I feel any infection may be going to my chest. My PMR started three and a half years ago.
I was told my bronchiectasis was caused by psittacosis which I contracted in 1989. The consultant at the time said “ if it’s any consolation the parrot is probably dead now “ 🤣
Some consolation, LOL! I'll remember to not get too close to parrots! Fortunately, my cough is now under control, but it was really severe when it was at its worst. I'll defintely be more aware going forward to any possible chest infection and get on it right away with the antibiotic. We'll see...
ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people have serious infections while taking ACTEMRA, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body.
Have doctors considered your weakened immune system from prednisone and Actemra as possible cause?
Yes, we've discussed this. I paused Actemra when I've had the infection/flare, then resumed once it has cleared. It's one of those risk/benefits things. I was down to just 2 mg pred. since early last December, then this came up in early February. Obviously it doesn't do much good to reduce to 2, then have to go back up to 40 to get things back under control.
That's why I'm going to try the antibiotic first, shoud this occur again, rather than increasing pred. But if being on Actemra makes me more susceptible to these infections, then why continue with Actemra? So, story to be continued. Thanks for your input!
I have been on Actemra for the last year or so - I have had no more infections than before when just on pred at higher doses than now.
The TB infection risk is for patients who have previously been exposed to TB and may have latent TB and we are checked for that before starting it and monitored while on it. In fact, the same risk applies for treatment with leflunomide and pred in GCA and other biologics used in RA.
Normally your doctor would advise you what should be done before starting Actemra and I was told to contact them in the event of having ANY infection and you would certainly usually stop the injections if you had an infection requiring abx as you would with methotrexate and leflunomide as well. Your own doctor may have different views/
Yes, I have paused Actemra until I get it back under control. See my response above to Elephants 2019 which I wrote before seeing your post. Whether or not Actemra is the right thing for me remains an open question in my mind. For now I'm planning to continue with it, and then treat any subsequent infection, if that even happens, with a stronger antibiotic. I also will be seeing a pulmonologist in May, to get their input.
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