Have I made the wrong decision?

I have a chronic bladder condition and suffer with urinary tract infections from time to time. Several weeks ago I decided to opt out of starting enbrel and instead chose to go on methotrexate, the reason being that I was concerned about the cancer risk with the former. I think my rhematologist would have preferred me to go on enbrel as she was more concerned about my UTIs than the cancer risk, but was willing to go along with my mtx suggestion - I think the main reason for her mode of thought here is that enbrel exits the body more quickly than mtx thus enabling my immune system to fight an infection more quickly should I get a stubborn UTI.

Now after hearing David Cameron currently voicing his concerns about antibiotic resistant bugs I'm having second thoughts about going on enbrel. I was previously aware of the concerns about antibiotic resistant bugs and did take this into account when I chose to go on mtx, but something I completely forgot to think of at the time was that there are two types of antibiotic that you are advised not to take while on mtx. I can't recall one of them but trimethorporim (scuse spelling) is the other, which according to my GP, is the drug of choice for e. coli infections, which as luck would have it is the type of infection I usually get. I'm not aware of any antibiotics that you can't take with enbrel(?)

I am now thinking of phoning rheumy helpline in the morning to see about stopping mtx and starting enbrel as my rheumatologist did say that this option was still open for me should I change my mind in the future.

I'm still a little unsure about all this and maybe I'm unduly concerned, so would greatly appreciate some thoughts on what others would do in the same situation so I can make a more informed decision.

I should mention that I also take lefluomide and hydroxy with mtx.

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35 Replies

  • A horrible position to be in & think only with the help of your Rheumy & her explaining fully the implications of embrel & the benefit you could get from it you can reach a decision you feel's right for you. All the drugs offered to us seem to come with unwanted other things don't they?

    With regard to MTX & antibiotics, if we need to take them we're told to stop taking it until the course is completed because they can increase toxicity of the MTX. The ones I was informed must avoid were penicillin based ones, Trimethoprim & Chloramycetin & have been prescribed erythromycin for UTI's & another one (the name eludes me at the mo) in the past, both of which did the trick.

    I'm sure those who are on embel will pass on their experience & help but as I know nothing about it wouldn't know whether any antibiotics shouldn't be taken with it. You could have a look online & see if you can find the patient info leaflet & see if mentions anything?

    Hope you're able to come to a decision that's right for you & you can get some form of treatment going soon.

  • I am currently taking antibiotics for an Abcess, I am still taking Leflunomide and injecting Enbrel, I must admit I had not thought about coming off medication. The only time I have come off both Lefl and Enbrel was for chest infection and was advised to come off all medication until that had been resolved. So maybe I should have come off this time as well, but as I am nearing the end of the course will continue to do as I am at present. I don't appear to be having any adverse effects from it all. May be I'm just lucky this time!

  • Hello! I'm on leflunomide and the leaflet does not say to stop when taking antibiotics, although like you I had a very bad chest infection last spring and was asked to stop leflunomide whilst on antibiotics and recovering. I thought that this was to help boost my immune system more than for adverse effects to taking antibiotics with leflunomide. Though I know it's a different story with methotrexate.

  • Hi heelsy,

    Can't recall ever being told to stop mtx while on antibiotics. I know it says so in the leaflet, but when I was admitted to hospital with my very first UTI the doctor there told me to carry on taking mtx. As did my GP when I went to see him a couple few months later with another UTI, he also prescribed trimethorprim, which I didn't know at the time was one to be avoided. He did the same thing twice again despite me telling him that I should not take it. I now avoid my GP for RD matters and phone rheumy if I have any concerns. Think I asked rheumy shortly after whether or not I should take mtx with an infection but can't recall what they said. Anyway, I stopped taking it around that time and was put on lefluomide + hydroxy.

  • Hiya Wishbone. Just checked the info leaflet from the injection I should have had this morning if I didn't have brain fog & took my folic acid. It says in the Summary of Product Characteristics (in precis)

    Oral Antibiotics - tetracyclines, chloramphenicol & non-absorbable broad-spectrum antibiotics can interfere with enterohepatic circulation .......

    Antibiotics - like penicillines, glycopeptides, sulfonamides. ciprofloxacin & cefalotin can in individual cases reduce the renal clearance of MTX .....simultaneous haematological & gasto-intestinal toxicity may occur.

    Nowhere could I find it's advisable to stop MTX when on any of them, but from the possible reactions if we do I would rather anyway even if not told to. We don't need any more problems if we can avoid them lol!

    It also does state to tell your GP that you take MTX if he prescribes an antibiotic, so basically it seems that they don't need to know what we can't tolerate when on it & it's left to the patient to inform!!!! Brilliant eh?! But wouldn't have been too happy if mine did as yours having informed him & sounds as though you've the right idea avoiding your GP for RD related matters. Having said all that my f-i-l law is allergic to penicillin & his GP who he's been seeing years always automatically prescribes it & even has a alert that flags up on his screen to say he is. Beggars belief doesn't it?

  • I just discovered recently that my GP has been getting warnings popping up on the screen every time they do one of my repeats, and its something I have been concerned about too, but still happily prescribes. Makes me wonder if they would accept that if it was someone prescribing for them.

  • Again, back to walking a day in our shoes eh?

  • Hello

    Yes drugs like Tramadol have been registered as CAT 3, so it comes under a restricted medication and has now to be signed for. I do not know what you take all I understand is that might not be the only one that has been upgraded.

    Now I am having problems with Celebrex, although this may be my GP surgery with their supplier.

    All the best


  • Hiya Bob. It would seem that there are fears about COX 2's are becoming increasingly problematic in long term use. I used to take celecoxib & have had my daily etoricoxib reduced to prn only. I know that valdecoxib has been banned in the US & from what I've heard etoricoxib isn't approved by the FDA in the US. Of course rofecoxib (Vioxx) was voluntarily withdrawn by the manufacturer back in 2004 due to the same issues (cardiovascular issues - possible heart attack/stroke) so it's my thinking maybe the other COX 2's on the market are undergoing further investigations, hence your problems with represcribing & mine with the advice I received of only taking it when absolutely necessary. Maybe asking your GP about it would be an idea, he may be forthcoming with some answers for you. I intend asking my Rheumy at my appointment at the end of the month what's likely to happen & if any safer, equally effective others are an option.

  • Hello Heels

    Will be seeing my RA in two weeks time I am new to this clinic so I understand he is revisiting my condition for not only suppression also for some medications for improvement of my condition so I will just have to wait and see. Sadly many of the medications on offer suffer me with contraindications and the ones I take now were tried and tested and proved beneficial in control of the Psoriatic Arthritis.

    So will see how things go


  • Neither did I notice any adverse effects Georje whilst on mtx, though it may have affected my brain slightly, :) and that includes being prescribed a weeks coarse of the wrong antibiotic...could be I got lucky as well.

    Regarding enbrel, my rheumy nurse told me that I MUST stop injecting if I get a UTI. Not sure about other types of infection but imagine the same thing goes.

    edit....I recently had a UTI while on lefluomide + hydroxy. Rheumy did not tell me to stop taking it and were aware of my infection.

  • Thanks for that heelsy, very informative. Penicillines are what I'm usually prescribed, so it might be a good idea to ask someone, preferably my urologist, if they are safe to take as I've already got an enlarged kidney so sure don't need more problems in that department.

    Actually it was my wife who informed my GP (she picks up most of my prescriptions) that I should not be prescribed trimithoprim. His response was it's the best antibiotic for your husbands infection and he should still take it, and refused to prescribe a different antibiotic... as you say it beggars belief on times! My local village pharmacist seems to be on the ball though... when my wife took the above prescription to him he informed her that he didn't think I should take trimithoprim with mtx and advised me to check with rheumy, which I duly did and they told me not to take it and to tell my GP that rheumy said I should be prescribed another antibiotic - he didn't argue this time round and gave me a different antibiotic. My wife picked up my previous/first trimithorprim prescription from a different chemist (who weren't familiar with my health conditions) while out shopping in our nearest town. I didn't know that certain antibiotics should be avoided at the time so took the initial coarse of tablets. We now make sure we go to our local pharmacist for any new medication we are prescribed.

  • Not really, just copied the info, but thanks. I don't know if it's the same for enbrel but certainly would question regarding your kidney problems so would agree & think it best to check with the team treating you. It just goes to show though & dread to think how the land would lie if, God forbid, anything should happen should someone take meds as prescribed by our GP's who we should be able to trust to at least check that there are no contraindications with any of our meds. It's not as if they'd to thumb through books nowadays, it only takes the press of a few buttons to find out. At least he eventually relented but it shouldn't be necessary to have to get your Rheumy involved should it? Smacks of Practice money saving yet again to me & that shouldn't be at the cost of the patients' health or well being.

    Like you we also have a good pharmacist & has helped us on a few occasion. My h is seeing her next week to be re-taught how to use a steroid inhaler which it seems he has been administering incorrectly. He's been taking it as directed & was shown how to use it by one of our practice nurses when it was first prescribed but had cause to question this as he's developed oral thrush & not getting a full dose it would appear. No great problem but an unnecessary one. She really put my mind at rest when I questioned her about me taking a bisphosphonate too, taking time to fully explain & answer when I told her my reasons for resisting helping me decide it would be beneficial in the long run. Even to the point of leaving an hour longer before taking my other meds & drink more water when taking it than my GP had prescribed. So we're like you & use the same one each time, whether prescribed new meds or not as it pays if you've got a good one & they know what else you take regularly.

  • that sounds like a really excellent pharmacist. Wish they were all like that. Know what you mean about using inhalers. I was taught how to use one correctly by a doctor who had asthma themselves, so did get a fairly good technique, though more recently I have been given a small spacer device and that makes it a whole heap easier to get the dose where its meant to go, and not just all over your tongue. Get your husband to ask about spacers.

  • Will do, thanks earthwitch. Though unsure what a spacer device is. He's only just this last month been considered asthmatic & uses an Easyhaler. Is it some kind of attachment? Sorry for sounding thick but all new to us. He's been talking with our pharmacist so don't know first hand what has been discussed other than she's going to demonstrate with one she has for this purpose. A knowledgeable pharmacist is a good pharmacist & ours is always going on courses & seminars & miss her when she does as the locums just dispense.

  • Not being the type of person to let things lay, I phoned my GP the day after the trimethorprim fiasco to find out exactly what was going on. I asked him how was I repeatedly prescribed an unsuitable drug. He couldn't really answer my question and his rather sheepish response was that it's normal first step procedure to prescribe trimethorprim to patients with a UTI. Goes without saying that I was taken aback and a little angry by his reply. Think I said something like - that's not a very good way of doing things is it!.. and abruptly put the phone down. I well understand that GPs are under both financial and time pressure, but as you say - it only takes a couple of minutes to check a patients case history on a computer screen, I don't think that's asking too much.

    Sounds like you have an excellent pharmacist there. Seems like we're both fortunate in that respect.

  • Well done you Wishy, too many people would have just let it lie but sometimes it's necessary to face up to those in charge of our health when mistakes are made. It may have been the best (or cheaper??) antibiotic but you're not a "normal" patient & consideration should have been given to the other meds you take, particularly for a recurring infection & a note on your records should be all it needs to avoid represcribing .They're not infallible & as you say under time constraints but too often things are overlooked for the sake of an extra few minutes at an appointment. Slightly off subject, if I apologised to my Consultant Rheumy if I had a longer consultation that normal he used to say "you're the only important person right now & when I see my next patient, they will be" which I thought was a great attitude & if I had a 10 minutes extra wait for my over my appointment time any time I reminded myself of what he told me.

  • I was told to brush my teeth after using asthma inhaler as it can protect against thrush. I suppose rinsing out mouth would also help

  • Thanks cathie. He was told to do that & has done religiously since first using it. Our pharmacist did question if he did & said if he finds no improvement after he's had his demo with her it would suggest a mouthwash for him to use alongside.

  • If you are concerned about the cancer risk, then I'd strongly advise searching for up to date and accurate information about it. From what I understand, the risk of solid tumours really isn't increased any by the biologics, and even the blood borne tumours (like lymphomas, etc) are only very marginally increased. It would be really good if you could find a doctor or other health professional to discuss the risks in more detail, as risks of repeated infections and kidney damage also aren't good. It does come down to your own personal decision in the end, but do make sure you have enough information to make a confident decision. It doesn't sound like you are confident at the moment.

    I wouldn't worry about changing your mind though - you can easily go back to the rheumatologist and say you have had more time to think and get more information to base a decision on, if you you do change your mind. If you can't get to see the rheumatologist, find out how you can get a message to them as quickly as possible - might be email, letter, or by passing on a message to the rheumatologists secretary to ask if you can have another discussion in the near future about it.

  • Hiya earthwitch,

    I have discussed it with my rheumatologist, she said that since enbrel's introduction some 14 years ago as yet, there is no proven cancer link. As mentioned in my initial post - she is more concerned about my infections than the cancer risk so think she would have preferred me to go with enbrel. She also contacted my urologist to hear his thoughts about me going on enbrel and said she couldn't get a positive response from him as he would not commit himself either way, which didn't help matters as his response, rightly or wrongly, did tip the scales against me starting enbrel.

    Think I've already made up my mind as the risks from infections seem to outweigh that of cancer, so will get in touch with rheumy about starting enbrel. My next appointment with my rheumatologist is 3 months away so will phone the rheumy helpline this morning. Maybe I can get the go ahead over the phone as I have passed all the assessments and was just waiting for rheumy to contact the enbrel nurse to arrange a home visit to show me how to inject.

    I know I shouldn't worry about changing my mind, but can't help thinking that I've messed them around with my indecision, which appears to get worse the older I get! Anyway, will let you know what happens later today...providing I don't change my mind in the meantime that is. ;)

    Thanks for the responses everyone.

  • I took infliximab for about ten years. Similarly to embrel they warned about possible cancer. I was fine. Did however have some liver damage from methotrexate, so had to stop both. Now am 8 weeks into embrel, it seems to be working very gently

  • Hi cathie,

    If it wasn't for my concerns that my bladder condition might develop into cancer then I wouldn't have hesitated about starting enbrel. I explained this to my rheumatologist, that's why she got in touch with my urologist, who for whatever reason, did not give her a definitive answer. She did say that in her opinion the risk of me getting bladder cancer with or without enbrel was low. I would have been much happier if my urologist had said something similar though.

  • I took Enbrel for 8years, it was the best drug by far at controlling inflammation. It got me out of a wheelchair in 15 weeks. I did have lots of lung infections after several years and as a result had to come off it in the end. I was so sad because it really turned my RD around. I wish you the very best of luck and hope it works its magic for you.

  • Thanks Metal-legs.

    Amazing how well it worked for you and a great pity that you had to stop taking it. How are you doing with your current meds?

  • Spoke to rheumy nurse on the phone this afternoon and said that I'd been weighing things up this last couple of weeks and changed my mind about starting enbrel, and would like to give it a go if that's ok. I also apologised for any hassle that my indecision may have caused. The nurse was so nice and said that she didn't want to hear any apologies as she understood my concerns and was thankful that she was not in the position of having to make such difficult decisions. They really are a lovely bunch at my rheumy, including my rheumatologist who has done her best to help me. The nurse is going to see what she has to say and said it might be possible for me to get the go ahead over the phone. If not then I'll be in for a bit of a wait as she (my rheumatologist) is going on 4 weeks leave starting next week.

    Will post when I hear something...

  • Great result wishbone, well done you. Your rheumy team sound so caring and understanding, just what you need right now, when you have a difficult decision to make. I hope you can get started on enbrel soon, I have everything crossed for you and hope you stay free from UTI's. I have been on abatacept for 12 weeks now, it is working but not max. effect yet. I must stop comparing it to enbrel. Enbrel reduced my CRP from 105 down to an incredible 3 in just over 3 months.

  • Thanks for the kind words.

    CRP down to 3!!!...Crikey, with that count you must have been tempted to have a bash at doing some cartwheels across the living room floor. :)

    My CRP has gradually increased over recent months - latest count was 70, but think it's probably gone up some since then as I've not been feeling too good this last week or so. This is probably due to recently having my lefluomide dropped from 20 to 10mg and having it replaced with 10mg of mtx, so still some time to go before that has much effect. Think mtx took around 3 months to kick in properly when I was first put on it 10 years ago.

  • what does crp mean

  • When you have blood tests, C Reactive protein (CRP) is a marker in the blood that measures active inflammation. So when your Rheumatoid disease is bad, your CRP level will be high. It also a marker for infection.

  • My rheumy nurse just phoned to give the green light for enbrel. I have to wait 4 weeks though as they have to redo all the paper work, which made me feel a bit guilty again and I almost apologised for the extra work I've caused, but remembered what she said yesterday and refrained from doing so. The only thing she asked me was if I wanted to stick with my choice of pen type injections, which I did. She will let me know when everything's sorted.

    Thanks everyone for listening and responding to my concerns, much appreciated.

  • That's great news Wishy. Hope all goes to plan & it works well for you.

  • Thanks heelsy,

    Yeah, I could do with some luck for a change...a CRP of 3 like Metal-legs had on enbrel will suffice. :)

  • Great news wishbone. I hope it works as well for you as it did for me. I wasn't very patient waiting all those weeks for it to work and was beginning to think it was never going to happen but hey I got lucky. You deserve the same luck too, sending you very best wishes on your enbrel journey.

  • Thanks Metal-legs.

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