GCA and PMR diagnosed three months ago. Now down to 25 mg pred. and the usual calcium and suppliments, plus a wide spectrum antibiotic since the start. At my last visit (last week) with my Rheumy, she made a big point to the effect that I need to report any infection that I might get to her ASAP.
I didn't think to ask why, so maybe someone here knows. Is there something about my current dose of pred (25 mg) that causes people to start getting infections?
Steroids reduce the activity of your immune system - and although that’s good for the inflammation produced by your PMR and/or GCA it does mean that it doesn’t work as well on normal infections etc. Therefore you are more at risk - and theoretically the higher the steroid dose the higher the risk - likewise with operations, there is concern that you won’t recover as well. How much is conjecture - how much proven I‘m not sure.
I agree, it was an odd thing to say without linking it to an infection you have or are prone to. Yes we know that Pred suppresses the immunity, that’s how it works, because it is our immune system that is attacking our own body. This does leave us prone to infection but apart from the usual precautions, hygiene and avoiding people who are ill, there isn’t a great deal we can do. I would ask her to explain what she meant. What are the wide spectrum antibiotics for.?They are not usually given routinely with these diseases.
As soon as she put me on 60 mg pred, she started the antibiotic. I do not have a history of frequent infections... I'll have to ask her at our weekly phone chat!
Thanks for your input!
Do you have any other health issues that affect your immune system as well which would cause you to need to start long term Antibiotics?
Not that I'm aware of. I smoke, that's about it. As I mentioned, she started me on the antibiotics back in October...
I think she is really slightly overreacting. The antibiotic treatment is used in other forms of vasculitis in other parts of the world but it is rarely used for GCA. It is one thing to tell patients to try to avoid contact with infections - but since most are viral the abx won't help. There is a form of bacterial pneumonia they worry about - but in all the years on the forums I don't think I have come across anyone who got it.
Early on, I was concerned about the harm the antibiotics might do to my already sensitive digestive system (diverticulitis, stomach ulcers).
And here I could have asked here months ago about this! Made an assumption early on that Pred equals no immune system, so antibiotics needed. Wrong.
Thank you for this information!
Upon starting 60mg prednisone for GCA, my rheumy prescribed Bactrim (sulfamethoxazole) and said it was to guard against a lung infection, likely what you mention above. She said to stay on it until I am dropped below 20mg pred. It seems quite a long antibiotic course to endure. I have been eating yoghurt on a regular basis, or my digestive system gets messed up.
Surely it is worse to take antibiotics long term in terms of managing bacterial infections and abx resistance????
It's sometimes necessary for people whom also have other chronic health issues that cause immune deficiency.
I have periods , like now , when I am put on a long course of Antibiotics/ Antifungals not just for treatment but as a Preventative measure after a number of infections , but this is because of the different Chronic issues I have going on and the effect that these , and steroids use , have on my immunity.
It's not specific to the GCA/ PMR . The Connective Tissue and Hypersensitivity issues are the cause for the need for extra precautions.
I'm assuming if GCA is the only issue that this is one of those times when different Rheumatologists follow different guidelines. Is it a non UK guideline?
I don't know about any guideline but I'm in the US. And my rheumy is fairly young. May just be being cautious. Now that I'm knocking on the door of low dose, I will be getting off the antibiotics soon. Maybe she anticipated that and made a point of being watchful about infection with regard to that.
If you like kefir you can add that into the yoghurt regimen. It's somewhat superior because it contains more strains of the helpful lactobacillus. Perhaps you are already doing this, but take your yoghurt etc midway between doses of the antibiotic. I believe a study showed that this helps ward off unpleasant organisms taking over when the good ones are killed off by the antibiotic because every few hours your gut is repopulated with helpful organisms from the yoghurt etc..
I am also in US.I was immediately put on bactrim when dx with gca. I was on it for several months until I was down to 20 mg prednisone. You said you also have diverticulitis. Did they hesitate to put you on Actemra with diverticulitis? Any side effects from Actemra?
Not Actemra. D3, dietary calcium and she just ordered blood tests to verify that if I start Methotrexate it is not going to cause any problems.
We did discus the diverticulitis problem with Actemra.
Thanks for asking!
When I asked Prof Mackie I think she said she'd not known anyone doing it in the UK and certainly not for GCA. Probably GPA - it can affect lungs.
Worried about seeing rheumy
Still concerned about statins
Appointment with rheumy in August!! (and a bit about Italy)
Advice on how to talk to Rheumy about a slow taper at the lower doses
Rheumy talks about PMR
