Preventative Antibiotics: Hi all, I've been a GCA... - PMRGCAuk

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Preventative Antibiotics

montebello profile image
28 Replies

Hi all,

I've been a GCA patient since AUG 2022 and am currently on 40 MG PRED (down from 60, then 50). My rheumy is concerned about my immune system and has prescribed a preventative course of atovaquone to protect me from pneumonia -- even though I've recently had the pneumonia vaccine,

He prescribed atovaquone since I drink about 6 oz wine with dinner each night. The other option was bactrim, which can NOT be taken with alcohol.

I'm wondering if any of you (who are on high doses of PRED) have also been prescribed preventative antibiotics? I hate to take things I don't need to take, especially when I'm already a space cadet with all this PRED.

Thanks for your input.

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montebello
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28 Replies
SnazzyD profile image
SnazzyD

Do you have any other medical conditions that might make you more prone to pneumonia? In the UK people with GCA aren’t routinely prescribed prophylactic antibiotics at these doses. So you had a “pneumonia vaccine” but it doesn’t protect against all type of pneumonia causing bugs, and is intended to help prevent severe infection from Streptococcal type bacteria that like the lungs. The Atovaquone is to help stop pneumonia from Pneumocystis bugs which are a bigger risk in the immunosupressed. It doesn’t come up a lot as far as I can see, even with those from the US, but you’ll get more thoughts from other better qualified than me.

montebello profile image
montebello in reply to SnazzyD

Thanks Snazzy

DeepThought2 profile image
DeepThought2

Dear Montebello; I received bactrim when I was above 20 mg pred. That is a standard procedure in Germany where I live and is to prevent Pneumocystis-jiroveci-pneumonia. Fortunately I was able to taper pred fast with the help of Tocilizumab so I had to take it for maybe only a month or two. But I am certainly not sure if it is urgently needed and how the standard procedures in other countries look like.

montebello profile image
montebello in reply to DeepThought2

Thanks DeepThought

PMRpro profile image
PMRproAmbassador

It is a different pneumonia from those covered by the vaccine. I discussed it with Prof Mackie once and she said she'd not come across it being used in GCA in the UK but it seems not unusual in the USA and some other countries and it IS used in the UK in other, nastier, sorts of vasculitis.

montebello profile image
montebello in reply to PMRpro

Thank you PMRPro

Merryfield profile image
Merryfield

Man, I like my wine but am thinking of giving it up. But starch n sugar are hard to give up, too. And ice cream🙁

montebello profile image
montebello in reply to Merryfield

You know, this GCA is no walk in the park. The 6 oz of wine at night is sooooo looked forward to. I've stopped all candy, ice cream, cookies. But oh that wine. Maybe one day I'll have to stop but not yet.

PMRpro profile image
PMRproAmbassador in reply to montebello

Have you seen the latest recommendations from the Canadian government? 2 glasses a week ...

montebello profile image
montebello in reply to PMRpro

Well I'm not Canadian, so that doesn't apply to me. JUST KIDDING

JuneWalker profile image
JuneWalker in reply to PMRpro

PMRpro it’s ridiculous, 2 glasses a week. That’s our idiotic Liberal government. They are looking for ways to increase taxes on alcohol, just add another warning label. Yet there are weed stores at every corner.

Merryfield profile image
Merryfield in reply to montebello

I had a margarita and ice cream last night, so much for quitting alcohol and sugar. 😬

Merryfield profile image
Merryfield

Montebello. Here I am sitting and drinking a margarita!!

nallufl24 profile image
nallufl24

I’m in the US and Bactrim is routinely prescribed on higher doses of prednisone. I took it when I was on 60 mg but was told to stop it at 40 mg

montebello profile image
montebello in reply to nallufl24

Wait a minute, I'm already at 40!

LIVEORDIEHEREIAM profile image
LIVEORDIEHEREIAM in reply to nallufl24

Exactly my experience! (Michigan)

montebello profile image
montebello

I live in the USA also, so maybe will be stopping at 40 mg as well. Thanks

Viveka profile image
Viveka

A rheumy in UK offered me antibiotics as a precaution when I started with GCA. I said no thanks. I thought it was a very strange offer. I have had no problems with infections - a couple of nail infections for some reason but they healed up. I think it depends on your background health. At high doses Pred I would be wearing a mask in busy areas during the winter period. As to diet personally I think it's a matter of reducing treats not eliminating altogether - some sensible moderation, again unless health issues suggest otherwise.

montebello profile image
montebello in reply to Viveka

Thank you. I agree with your comments. I'll take the antibiotics for a while, but if they start messing with my GI or start giving me rashes then I'm going to stop them. I'm like you, I wear masks and disinfect my hands and face often -- and don't go anywhere unless I have to until I'm at a lower dose.

ShadyLady165 profile image
ShadyLady165

Here's what I can't figure out - if you look up atovaquone (here in the US) it says it's an anti-malaria drug. What am I missing?

montebello profile image
montebello in reply to ShadyLady165

Here's what I see on the internet: Atovaquone is used to treat Pneumocystis jiroveci [Pneumocystis carinii] pneumonia (PCP; type of pneumonia most likely to affect people with human immunodeficiency virus [HIV]) in teenagers and adults. Atovaquone is also used to prevent PCP in teenagers and adults who cannot take another medication used for prevention. Atovaquone is in a class of medications called antiprotozoal agents. It works by stopping the growth of certain types of protozoa that can cause pneumonia.

gtate1914 profile image
gtate1914

Isn't overuse of antibiotics leading to antibiotic resistance? I said NO. Never had a problem as a result, 5 years now. I was as high as 80 mg. Currently at 4 mg.

Merryfield profile image
Merryfield in reply to gtate1914

Congrats on reducing from such a high level.

LIVEORDIEHEREIAM profile image
LIVEORDIEHEREIAM in reply to gtate1914

If I had known better...

ShadyLady165 profile image
ShadyLady165

Thanks for that info - I frequently just click on a word, then right click to get the definition - which is how I found the anti-malarial information. Guess that isn't such a foolproof way to discover anything. This is what wikipedia came up with:

Atovaquone/proguanil, sold under the brand name Malarone among others, is a fixed-dose combination medication used to treat and prevent malaria, including chloroquine-resistant malaria. It contains atovaquone and proguanil. It is not recommended for severe or complicated malaria. It is taken by mouth. Common side effects include abdominal pain, vomiting, diarrhea, cough, and itchiness. Serious side effects may include anaphylaxis, Stevens–Johnson syndrome, hallucinations, and liver problems.

Sounds like fun, NOT. Glad it has uses more relevant to you.

JuneWalker profile image
JuneWalker

I live in Canada and my rheumatologist prescribed Septra antibiotic when I started Actemra in August 2022. It was to prevent me from getting pneumonia, etc. I continued Septra until I was down to 15 mgs. of prednisone.

montebello profile image
montebello in reply to JuneWalker

June, did you experience any side effects? Thank you

JuneWalker profile image
JuneWalker in reply to montebello

I never experienced any side affects with Septra. I had pneumonia early in the summer before I started Actemra and Septra.

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