Confusing advice: I just wanted to say that I've found... - NRAS

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Confusing advice

cathie profile image
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I just wanted to say that I've found different opinions about taking antibiotics with methotrexate rather confusing. I've been taking mtx for about eight years and had never stopped it if I had an antibiotic. But several people have been quite categorical about this, so I delayed my mtx this week until I could get to see my GP. She had never heard about this as an issue, but promised to look into it.

I think also that we should try not to be too put off by the small print on drugs we take. Its important to look, but not to worry too much because the reactions only affect a very small part of the population in clinical trials. And the benefits are huge - taking anti-tnf + methotrexate has given me my life back to quite a large extent. I don't need painkillers which has to be a good thing.

I'm not sure whether it'd be helpful to share what my GP (in Scotland) says about mtx + antibiotic and whether there are specific antibiotics to avoid as I think someone said on this site recently. I'll be guided by your reactions.

Cathie

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Mel_ profile image
Mel_

Written in haste so sorry is what I write seem rushed!

This site is for advice, guidance and support it should NEVER replace your consutants or Dr advice. If ever you have a question regarding medication or treatment you can get others opinions on here, but please always seek your medical teams views. Regards Mel

in reply toMel_

Absolutley Mel. All I know is the pamphlet the Pharnmacy staples to their white bag containing the MTX is...discontinue in case of infection. It doesn't mention the word antibiotic.

Loret

Tricia-P profile image
Tricia-P

I agree with Mel always seek medical advise before stopping or starting a new pill or potion. Last year when I had the operations i had to stop the anti tnf Humira but stayed on MTX. This was new to me as the previous year i'd been told to stop MTX when I had my carpal tunnel op.

I believe that the use of drugs wether its a change in dose or the actual medication thats altered all depends on the latest instructions from NICE or the actual drug companies. that decision is the result of trials and questionaires that occur all the time in the UK. better to be safe than sorry :) hate that quote. xx

Tricia - P xx

cathie profile image
cathie

I agree with you both - my comments were really to say that its best to consult drs rather than get confused. Thanks. It helps if we understand clinical trials, because they may lead to new guidelines etc.

helixhelix profile image
helixhelix

Hi there

I agree with Mel/Tricia and the comment on top right of page that stuff here should never replace your own Doc's advice. We're just giving our experience, and also may not word things as carefully as printed info from drug firms so easy to give wrong impression.

But I think we're confusing 2 similar things. First whether or not there are antibiotics that aren't recommended with MTX unless under doctor's advice - and there is a short list of these in the patient leaflet (my MTX has Goldshield leaflet with it, there may be others). Doesn't necessarily mean you can't have them, but needs to be a doc's decision.

Then there's a second thing about whether it's advisable to be taking something that suppresses the immune system (ie MTX) when you want your immune system to be working to fight infection, with or without help of antibiotics. And that I think is very much dependent on each individual and how strong or not their immune system is likely to be, and how bad an infection it is, etc etc so no hard & fast rules.

But like you I try not to worry too much about short term stuff, as RA gives you enough to fret over. Polly

sylvi profile image
sylvi

I was told not to take my mtx by my rheumy and i did as i was told. I have seen a difference with not having mtx. I had strong antibiotics as i was quite poorly.

We are all different and what works for one won't work for another. Doctors advice is always best. They know each patient who they are treating.

I do find that advice differs from area to area,there is no standard for the whole country.

Hope everyone is ok. Sylvi.xx

LavendarLady profile image
LavendarLady

I was told I could take my MTX whilst on antibiotics but some antibiotics react with MTX and can cause a toxic reaction but not usually in the doses we have - it causes problems with those who are on MTX for cancer and taking much larger doses than us. I contacted my GP when my pharmacist told me the antibiotic the dentist put me on reacted with MTX. My GP prescribed another one for me which did not cause problems, but when I spoke to my consultant, he said it would have been ok to take the one given by the dentist because the MTX dose was so much lower. Confused? I went with my GPs advice. LavendarLady x

cathie profile image
cathie in reply toLavendarLady

Yes this makes sense - about the impact of the larger doses for cancer patients. This is helpful - we have to find a way of interpreting what they say don't we!

my RA nurse tell me not to take MTX, the Doctor teells me to take it! but I am interested in what your doctor tells you Cathy :)

interesting blog and I agree, very confusing advice x

cathie profile image
cathie in reply to

I will follow this up with the GPs. they're a very good practice based in Edinburgh, and I trust them to come up with good advice. XX

Yes this is a good blog subject Cathie. Perhaps what Loret said on my question re this matter is a good one - re asking the rheumy who knows more about MTX than a GP? Not sure really about that myself though because I trust my GPs more to be honest because they know me much better than my rheumy.

For example my consultant advised my GP to put me up from 7.5mgs to 15mgs. Unfortunately I didn't see my GP but a probationer who told me to take my rheumy at his word. Later my GP made it clear by his expression when I said I'd gone ahead and doubled the dose that he wasn't happy with this doubling of MTX in the space of a week. Today he was vindicated in his caution because my liver count (or whatever it's called) has gone up higher than it should be. If I'd been more patient and asked my own GP in the first place he would have just put me up slowly rather than doubling the dose as rheumy had stated I should in his letter.

Also the other GP I really like phoned me back last night and I told her that I'd taken my MTX despite having a fluey cold and she said she would have told me to go ahead anyway - and she commented that many of the contraindications listed with a drug are only presenting the worst case scenario for side effects and usually pretty rare.

My friend who's a GP says she usually takes a "suck it and see" for herself anyway! I think people who are trained and also experienced doctors usually depend on their instincts a lot and that's a good thing in my opinion. TTx

cathie profile image
cathie in reply to

Yes absolutely! Paddy says the same thing about clinical trials.

essexgirl profile image
essexgirl

i agree with you Lavender Lady my doc told me not to stop my MTX as its only a low dosage and there are antibiotics that are ok to take with MTX...

Wiliby i got my antibacterial gel today :-)

debs x

cathie profile image
cathie

Thanks everyone who's commented so far. If my GP gets back to me I'll post it.

Yes do Cathie - I think the real answer is to go with your GP, whatever the outcome, providing she is the person who you feel knows you best? And anyway it's good to have made her think and keep her practice up to date for the sake of all her MTX patients.

I told my GP friend about a radio interview concerning a site called Moodscope for people with depression - and she tells all her depressive patients about it now and says it's worked really well so GPs need our input too. TTx

Gina_K profile image
Gina_K

Very interesting Cathie re conflicting advice. My Consultant advises stopping weeks mtx if I have infection, as such taking anti biot. My aunt who is on methotrexate years & years, says she has never been told that. It is confusing, I have never asked my GP. I have only had two chest infections in 3 years on mtx & Humira, and rang secretary each time and asked her to ask RA Consultant. The advise was to skip Mtx until infection had cleared, this sort of made sense, because i felt my immune response would be better with immunosuppressant stopped?.

I think doctors differ on what they think is best. When I had the operation in October, the surgeon kept me on the Humira & mtx, most surgeons make you stop. My surgeon said the risk of a flare by stopping mtx & causing damage to the surgery site & undoing work he had done, was greater than the risk of the inability to fight infection.

Maybe I have this all wrong or misunderstood, but anyway as previously said we should all follow the doctors advise they give us, when we have faith in their abilities.

It is all a bit confusing, I dont think missing a mtx dose here and there makes any difference, only prolonged exclusion of mtx would.

Kindest Regards, Gina.

I hope above makes sense.

I agree with you Gina re prolonged use of MTX making it okay to drop the odd dose - but when you're just starting on it as I and several others on here are - it feels really bad to miss a whole dose when we are only just gathering momentum with a new and fairly toxic drug. So I think each person on MTX has to listen to their own instincts as well as those responsible for their medical care - especially when advise is conflicting and many of us know more about the medication we are on than our GPs too.

Cathie can you not ask your consultant or have you no rheumy nurse you can get a second opinion off? I know I wouldn't have anyone to ask but I thought it would be different in Edinburgh? Tilda x

Gina_K profile image
Gina_K in reply to

I know what you mean tilda, early days on meds are different, I was never on mtx alone, but the bottom line is, as has previously been said, a specialist in RA will advise their patient as to their individual requirements, we are all different. Generally, a Gp. Would not take on the responsibility and would request advise from the Consultant. Al different as we know.

Good luck, with metho, mostly I hav had no major problems.

Gina

in reply toGina_K

Gina, This is the thought I was conveying to Tilda yesterday, or the day before. The Rheumatologist is the Specialist in all auto-immune diseases. Our General Practitioners here would always refer an RA or suspected RA or other ai disease , to a Rheumatologist. They don't ever get involved with changing doses, or recommending changes to the Rheumy. I do not know, or rather , understand, what is a consultant? Is that a doctor, a nurse, Physician's Assistant? What credentials are required?

I have had all my surgeons tell me I had to discontinue MTX a week before surgery, because of the prolonged bleeding time, especially with spine surgeries and knee replacements. Then I couldn't start back for about a month, because they wanted to be sure I wouldn't develope an infection.

Maybe the pharmaceutical company could shed some light and explanation, they're the ones making the stuff!

C heers, ladies. Have a good day, I'm heading to the horizontal platform :) Love ya, Loret

Gina_K profile image
Gina_K in reply to

Hi Loret,

A Consultant is the European term for Rheumy, Specialist. In the U.K, I think GPs seem to manage RA meds a bit more than in say Ireland where I live, My GP would always refer me to RA Consultant with specific RA queries. :)

in reply toGina_K

UMMM, OK, then, is there a Rheumatologist who is the final word, after Consultant? Or is the title,:Rheumatology Specialist/ Consultant.

I think I was getting confused, imagining there were 3 different people handling each case.

Here we let the Specialists handle whatever specialties they are educated for. The GPs handle general problems, likethe colds and flu and cuts, etc. Broken bones are referred to Orthopedic surgeons, Cancer patients are managed by Oncologists, etc.

Interesting how many different ways there are to manage the same disease!

Thanks Gina, I think I got that straight now :)

Gina_K profile image
Gina_K in reply to

yep you got it hon!

heatherp profile image
heatherp

I think with the anti-biotics it depends which one it is and whether or not it interacts with MTX and other meds. I have had one occassion when I was only prescribed amoxycillan (SP?) and was fine to stay on other meds, but then when had my low white cell counts when on MTX a year ago, as well as cold etc, was prescibed something much stronger and even had to stop hydroxy for the week I was on it (can't remember what the antibiotic was called)....also re docs and consultants. I have always found my GP more cautious than my consultant, but I think that's because often the GP's get to see so many more / deal with more of the effects on other parts of the body from these meds. They will have patients from a number of consultants coming in with a variety of issues caused by the meds...

Beth58 profile image
Beth58

I've been on strong antibiotics repeatedly over the last 2 yr for mouth/gum infections.

I always check with the pharmacist who, I think is the best person to advise when it comes to contra-indications for medications.

Plus, if GP has a computerised system with prescribed meds listed, the I.T systems used today any new medication would flag up if there are contraindications.

But be safe and check with the pharmacist filling the prescription.

cathie profile image
cathie

Beth, that makes sense. Thanks. I hope you're feeling a bit better

Cathie

It depends on the antibiotic .there are a couple that are potentially dangerous with methotrexate.. trimethropim in particular. is one!, though. always seek medical advice from your local gp/ heath care team!

Alison x

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