Help offset Prednisone Side Effects: Is anyone who... - PMRGCAuk

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Help offset Prednisone Side Effects

Macadoo profile image
21 Replies

Is anyone who is taking Prednisone also taking Bactrim to prevent infection and Fosamax to help prevent bone loss? If yes, has taking those meds helped?

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Macadoo profile image
Macadoo
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21 Replies
PMRpro profile image
PMRproAmbassador

A senior UK rheumatolgist in the GCA and PMR field says she has not come across Bactrim (Trimethoprim/sulfamethoxazole) being used for GCA even when the patients are on high doses and it isn't routinely used in the UK. It is used in some other forms of vasculitis but the only patients I have come across on Bactrim for GCA are a very few in the USA. It isn't to help with GCA but is to prevent a particular form of pneumonia - I don't think I have come across anyone who developed it in the 10+ years I have been on the forums.

Fosamax/alendronic acid tends to be prescribed automatically together with pred but our advice is to demand a dexascan first to see if it is really required. I had a dexascan within a couple of months of starting pred and it was normal so I didn't continue to take it, just 4 tablets altogether. After over 7 years on pred, most of it at above 10mg/day, my bone density had barely changed even without it.

Macadoo profile image
Macadoo in reply to PMRpro

My rheumatologist prescribed Bactrim to prevent pneumonia. I am in the U.S.

I just got a dexascan yesterday so will know results on Monday. Thanks for your reply!

SnazzyD profile image
SnazzyD in reply to Macadoo

If I were to be very immunosuppressed with high dose Pred I would want to discuss the risk of Bactrim causing fungal overgrowth and upset of gut flora that could be equally problematic. I would also want to get some figures on effects on the blood disorders associated with it, especially if it was long term which it would need to be.

bnf.nice.org.uk/drug/co-tri...

Macadoo profile image
Macadoo in reply to SnazzyD

I've just had my first dose...a double dose and it made me feel terrible...so in addition to possible gut flora and potential blood disorders, I'm going to inquire about not taking it. I currently take 20mg Prednisone daily for the PMR.

Thank you!

SnazzyD profile image
SnazzyD in reply to Macadoo

I’m not a doctor but 20mg is a moderate dose, not a crazy high one, so do ask your doc what puts you specifically at risk from certain infections (one antibiotic doesn’t fit all the possible infections one is at risk from) at this stage that warrants the risk from the antibiotic,

PMRpro profile image
PMRproAmbassador in reply to Macadoo

If you only have PMR then the likelihood of needing Bactrim is minimal, if not non-existent, It is a horrible drug to take, trimethoprim alone cause problems. It is used for high dose pred and other immunosuppressants in "real" vasculitis. Of them all, PMR is pretty minimal in its effects.

Macadoo profile image
Macadoo in reply to PMRpro

Rheumatologist said he prescribed to help prevent PCP...but the real risks of taking it seems to outweigh the potential benefit.

PMRpro profile image
PMRproAmbassador in reply to Macadoo

I have never met a PMR patient who has developed it - and that is probably thousands by now. I wouldn't be happy taking Bactrim "just in case" - but it has never been suggested and is not a recommended approach in GCA/PMR in Europe although a very few doctors may use it in other more serious forms of vasculitis, particularly in patients where the lungs are involved. They are not in GCA and PMR.

Telian profile image
Telian in reply to PMRpro

I take 20mg Trimethoprim for my Urology problem and it helps - only supposed to be until I get an appointment which won’t be any time soon I’m told. Third month on it now - what should I be concerned about?

PMRpro profile image
PMRproAmbassador in reply to Telian

Bactrim is two antibiotics combined - not just trimethoprin. If you can take trimeth without problems there is probably nothing to worry about.

Telian profile image
Telian in reply to PMRpro

That’s reassuring, thank you. Have had Bactrim in a tube for my nasal passage following surgery.

Macadoo profile image
Macadoo in reply to Telian

Not sure about trimethoprim...but Bactrim has lots of potential side effects including potential stomach issues.

Telian profile image
Telian in reply to Macadoo

Thank you for that. All information welcome.

fmkkm profile image
fmkkm

Good morning Macadoo,

I live in the southeast US and have had GCA for 4.5 years. My doc never mentioned long term antibiotics for GCA. Do you have a history of pneumonia? I use antibiotics as a treatment of last resort. There are lots of studies right now linking the gut flora to the proper functioning of the immune system. Taking antibiotics is hard on gut flora.

Your doctor may have a very good reason for antibiotics, ask them to explain.

Best/fm

Macadoo profile image
Macadoo in reply to fmkkm

Thanks for the information.

yourpharmacist profile image
yourpharmacist

Hello I am currently on prednisone. 5mg daily, was off for 18 months then flare then high dose and taper over a month to where I was holding at 1mg till March 2020 back up to 5mg

Was given Bactrim to have on board preventive for infection on three times a week when on higher doses of prednisone because of reduced immunity.

I do not take Fosamax.

I am not a fan of the osteoporosis medications so I refuse to take.

I do not have a genetic osteo issue so I will try to work through the exercise and nutritional way.

I was dx 2015 GCA so I keep trying to get off of prednisone but looks like I will be on forever a low dose.

Have not had a blood test for F/up since flare due to Covid- I'm in NJ.

HOPE this helps You.

Macadoo profile image
Macadoo in reply to yourpharmacist

Are you still on Bactrim? What are your thoughts about is as a preventative ?

Adults2Kids3 profile image
Adults2Kids3

Hoping you have checked information on Fosamax as it has been shown to cause problems especially to jaw bones resulting in deterioration. I have no experience with that but know there have been lawsuits in the U.S. So just want you to have whatever information is available which you can find by doing search on internet.

PMRpro profile image
PMRproAmbassador in reply to Adults2Kids3

You will find far less biased information, based on experience and medical literature, here on this forum ;)

Adults2Kids3 profile image
Adults2Kids3 in reply to PMRpro

Thanks for response. I am very careful about info on internet and appreciate your comment. Also I greatly appreciate this forum and learning so much about PMR which I didn't even know was a medical condition of which I was diagnosed as having in 2017.

Spanky2019 profile image
Spanky2019

I was dx with gca April 2019. I live in midwest in USA. I was prescribed bactrim 3 times weekly immediately at diagnosis. Also, vitd3 - 50,000 units per week, vit d3-2000 units per day. I was also on 80mg prednisone. Also, dexilant forreflux & other gastro issues. Dexa scan showed osteoporosis so reluctantly agreed to do Boniva i.v. every 3 months. Think Boniva may be mistake. Also, started Actemra. Think Actemra may be helping. Actemra and Dexilant both extremely expensive but pharmaceutical manufacturer gave as patient accommodation. Extensive Labs every month from the beginning. Monthly appt with rheumatologist and monthly with primary since beginning. Was doing good for awhile. Recently terrible both arms painful again( had this before gca dx), back pain - think R/T Boniva. Lost 38 lbs with gca even though dose prednisone but large fast Wt gain with Actemra inspite of low carb diet. Good luck to you.

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