Desperation boulavard

I haven't posted on here for some time so hello again all.

A heck of a long story so will try to keep it short as poss, won't be easy though.

Anyway, not been in a good place since I had sepsis back in march. Have since stopped all my RA meds, except for hydroxy, which ain't helping much, because of the risk of getting sepsis again. My RA has run riot - enough to say that I'm in constant pain in many joints with frequent flares and am more less housebound due to serious pain in knees

As if that isn't enough to put up with I've had a skin infection for approx 4 months - some nasty form of foliculitis apparently. I've had to pay several visits to my GP and out of hours who, especially my GP, persist in prescribing flucloxacillin (6 courses to date) despite it just subduing the infection whilst I'm taking it, the infection then returns a few days after I've finished the course. I saw my GP yesterday who prescribed a second course of flucloxacillin to try and clear a recent rather nasty stubborn infection on my nose. When I politely asked him about trying a different antibiotic he said nothing and gave me a black look - think he thought I was trying to tell him how to do his job, which I definitely wasn't. I asked him if this infection could turn into something more serious and he said yes, if not treated. I was also going to mention about taking a swab of the infection to ID the bug so it could treated with an antibiotic best suited to kill it, if that's possible with the resistant bugs that appear to be on the increase, but his attitude put me off asking. When I went to out of hours a few months back they did take a swab and managed to ID the bug... I was later told that flucloxacillin was nigh on useless for the type of bug I had/have? and I should be treated with another antibiotic which I can't remember the name of.

Goes without saying that I'm not at all happy with the treatment I'm getting, especially as I'm at risk of getting sepsis again due to my compromised immune system caused by my RA and really don't know which way to turn. My GP wants to see me again soon as I've finished my current course of antibiotics, or to phone him if the infection should get worse in the meantime. The thing is I'm losing confidence with him and am at the stage where I would rather see someone else, preferably no other doctor in the same practice. Wondering if a visit to out of hours to explain my concerns there if that's preferable, or even possible?... I just don't know?

Hope I've explained things clearly as I'm not the best at putting pen to paper so to speak...wayward schooldays are to blame! :) I welcome any thoughts on my situation - maybe I'm out of line, unduly stressed and should trust my GP's judgement?... I really don't know??

TIA

wishbone

Last edited by

15 Replies

oldestnewest
  • Out of hours services can be a bit hit & miss, so to my mind it would be better to try to improve relationship with GP as that'll be your long term support. So, is there another convenient GP's practice that seems ok that you could transfer to? Or another GP in same practice that has a good reputation? Failing either of those, I think that maybe time has come to write down your concerns - politely of course, and showing you're more worried than cross - and hand it to the practice manager.

    What you've said to us sounds perfectly clear, so don't know why you're worried about not being able to explain yourself properly? It seems that what you need to say to GP is

    - concerned that health is not improving, and treatment to date has only temporarily calmed symptoms and not resolved underlying infection(s)

    - worried that repeat antibiotics are not the most effective for whatever you've got, and wonder whether it would be helped by either testing to identify exact cause and/or referral to skin specialist

    - worried that your RA is not at all controlled at the moment, causing a lot of pain and potential damage, and don't know what they next steps are for this either

  • Thanks for replying helix. Guess I must have managed to pick up some wording skills since leaving school. :)

    I have been polite to my GP - I'm a nice easy going bloke..honest! :) The last thing I want or need is to fall out with him, especially as the only other local practice has not got the best of reputations. As for seeing a different GP in the same practice, well he is the head doc - it's his practice. So would seeing one of his understudies be beneficial, possibly, possibly not. You could say I'm being too cynical here, but not sure I want to take the chance of seeing another GP in that practice.

    Regarding explaining my concerns to him... I have already done so and he was fine about it and told me not to worry too much. But when I asked about trying different different antibiotics as I did not feel that flucloxy was doing much good, which surley he must be aware of, he seemed to take it personally and I was questioning his judgement, which I suppose I was as it is my health he is dealing with here. The least he could have done is explain why he wanted to continue with flucloxy, but no, that's all I got was a black look. Not sure how I can talk to someone like that.

    When I first went to him when the infection started, I thought he would have taken a swab due to my history of infections, I also get recurring UTI's, and it was one of these that got into my bloodstream and caused the sepsis back in march. But he did not seem very concerned about the infection at the time. He is concerned now, that's why he wants to seeme again afte I've finished my current antibiotics. If he does not refer me to a specialist then, I will certainly request it.

    Guess Ill have to wait and see what happens.............

  • Oh dear wishbone, you have every reason to want a second opinion. Get yourself off to, is it the urgent care centre or out of hours doctor. You do need a swab. Get it treated.

    Babs x

  • Thanks Babs, a doc and a nurse said that he should have taken a swab when I went to out of hours at a later date.

  • Are you under a consultant because if your not you should in my view seek an appointment with a skin specialist. I think if i was you I'd get an appt. asap even if it means going private. Then I have a great GP but in your case clearly your not happy and if its a partnership can you see another one or can you change practices? I Hope you get some good advice or after Christmas then it might be time for a change.

  • Thanks for replying medway-lady, yes I'm not a happy chappie at the minute. Neither are my family and friends regarding the treatment I'm receiving. I'm hoping my GP will refer me to a skin specialist when I next see him, if not I'll certainly be asking him to. Providing this current antibiotic course doesn't do the trick that is, which I can more or less guarantee that it won't!....I would love to be proved wrong though.

  • I don't like the sound of dark looks given over something so obviously distressing to you. It's not right to be given the same antibiotic again - especially as it obviously hasn't done the job. I had sepsis earlier this year as a result of Azathioprone and have had a bad time this year and in the past with infections, including some type of foliculitus which the dermatologist mistakenly thought was Scurvy! My new rheumy studied the photos of this rash and said he felt it was some sort of Vasculitus. So yes you need to see a dermatologist and rule out some type of Vasculitus I would think. Best of luck getting this sorted - and perhaps go back to GP rather than out of hours as new opinions may just cause further confusion in my experience? If you cab please try to be assertive with your GP and ask for an urgent referral to skin specialist - also ask your rheumatologist for their input. Tx

  • Thanks twitchytoes, it's reassuring to know that others agree that my concerns are not unfounded.

    I was told that sepsis takes a long time to recover from, probably even longer for people with compromised immune systems...not good is it!

    My sepsis was caused by a UTI, I suffer with recurring UTIs, getting into my bloodstream. It settled in my right hip causing excruciating pain. Had to have two bouts of surgery to clean out the infection followed by six weeks of powerful antibiotics. I was on enbrel at the time and my orthopedic consultant reckoned that it played a significant roll in me getting sepsis. I've since refused to take any immune suppressants resulting in me being in a hell of a mess with my RA. I next see rheumy some time in the new year, and despite the sepsis risk, think I 'll have to try a low dose of mtx or something as I can't go on like this much longer. It's not fair on my wife either as she has to do a heck of a lot for me. :(

  • My sepsis was also supposedly caused by a UTI, so my hospital discharge notes say, although on my GP notes it was listed as cholecystitis which it certainly wasn't. I was newly on Azathioprone at the time and personally I think I had pancreatitis but no one was witty enough to get this until two weeks later when I was back on Aza and it happened again - back into hospital.

    I haven't been allowed to try anything else, having had allergies to MTX, Sulfa and Hydroxy - but my RA hasn't come back for 18 months now. I still have fluctuating ESR and CRP only with nerve pain rather than joint pain. My new rheumy hasn't yet decided what I have but for now RA is off the menu as a diagnosis I think. I did have inflammatory arthritis/RA but he has only recently taken over and is looking for Vasculitis or other connective tissue diseases now. Hoevever it takes a brave rheumy to decide on one unless it presents clearly in the blood, skin, organs or joints. Small fiber neuropathy doesn't seem to count of itself. I know my allergies get in the way a lot too.

    I'm seeing a urologist (urgent referral) because of pelvic discomfort, hypertension and microscopic haematuria - but no sign of UTI. I'll have a cystoscope in the new year but not expecting answers from this either.

    After the UTI sepsis I had my gallbladder removed despite only one large stone and no infection in my gallbladder itself. An abcess formed at the base of the keyhole incision so I went back into hospital for a third course of IV antibiotics this year plus oral ones. Then I had an open wound in my navel that needed daily dressing for about a month. Oh and I had pneumonia in March which took two courses to shift!

    I was on Prednisolone for five months but off it now for six weeks. Feeling much iller and fatigued again since stopping but no sign of joint pain. Nothing shows up in my immunology apart from paired Oligloclonal bands and a high ESR so I'm baffling my doctors.

    One thing that occurs to me - I've never been

    put on the same antibiotic twice and had seven courses this year - 3 by IV including Gentamycin. The surgeon wanted me to have one called Wankermycin but the hospital was too remote to be able to administer this so I was given IV Flucoxicilin instead. If you aren't getting better then surely the proof is in the pudding and the GP needs to refer you a X also try a different antibiotic. It ain't rocket science?!

    Take care and hope your Christmas isn't too painful. Twitchy X

  • Crikey, you've not been having much fun with that little lot going on Twitchy. I hope things start to improve soon.

    I'm also waiting to have a cystoscope . A scan revealed a couple of small bladder stones , so my urologist want's to have a closer look to see what needs doing. I'm really looking forward to that little show.

  • Poor you Wishy - little stoned can cause havoc I've heard. I'm actually pretty good these days but January to September was a bit of a nightmare. X

  • Hiya Wishy! Sorry to hear your updated news, but this has gone on so long I felt sure you'd be up & running again. Obviously this wasn't the case & in your position I'd be wanting to kick your GP up the bum. I'm also concerned about your Rheumy's ideas, is that as far as it goes just now, left undertreated? I appreciate there is the concern of the sepsis returning but has he not discussed treatment in the longer term? He can't just let things remain as they are on a maybe really can he?

    As things are GP's aren't overprescribing antibiotics so I'm surprised that 6 courses of the same one has been prescribed with little or no question done off his own bat of the route cause. It seems odd to me that as it's not cleared the infection, unless the courses have been too short or not a high enough dose or even not the right one to tackle it but nevertheless I would ask rather than keep trying he hands over the reigns to someone who will, a specialist. Has he suggested a topical steroid or is it too widespread to be an option? It may be that flucloxacillin isn't the right antibiotic for the job, or it may be a secondary infection, has that not been considered? My GP has a three counts & you're out approach, if her diagnosis & prescribing hasn't solved the problem she refers to a specialist.

    So.... I would contact him when this latest course doesn't clear the infection up (& explain that the out of hours identified it if you haven't previously) & politely request he sends his own swab to the lab (which really should have been done earlier) & take it from there. If he's hesitant I'd ask if he'll refer you to a Dermatologist.

    I hope you can enjoy Christmas in spite of everything & let's hope the New Year brings answers & a result. Do keep us updated. x (you deserve it whether you want it or not!) :)

  • Hi heelsy, hope things are ok with you.

    Where to begin...as mentioned it's a long story..............................

    Best make clear the antibiotic thing first - my GP has prescribed 4 courses of flucloxy, including the current one, and out of hours I'm pretty sure prescribed 2 courses. My wife just reminded me that they were going to prescribe a 3rd course of flucloxy, but I brought it to their attention that the previous swab test result recommended a different antibiotic, which they then prescribed. I can't remember what it was though. The new antibiotic did clear up a stubborn infection on my back, which the previous flucloxy courses failed to do and stopped any new pustuals forming for a couple of weeks as I recall. I visited my GP just after I started the new antibiotic. I remember this because he wanted to try lancing the infection on my back as it wasn't responding to flucloxy. I suggested that I finish the current course of the new antibiotic to see if it does the trick, which it did. So he is or was aware about it. Not sure if I mentioned the swab test but think I must have.

    When I saw my GP last week, I mentioned my concerns about what I 've been hearing about antibiotic resistance. He said that it is wrong to blame overprescribing by GPs as the main problem, as they were only allowed to prescribe just a handful of different antibiotics. He then said that consultants were more to blame, can't recall exactly why, but think it was to do with they keep chopping and changing the more specialised antibiotics instead of giving them chance to work. Something he certainly doesn't believe in if my case is anything to go by. Take what you will from what he said, I'm not sure what to think, but it's more likely that the resistance problems are due to a number of factors - giving too many antibiotics to farm animals being another one. There was a doc on radio 5 a couple of weeks back saying that antibiotic resistance is already becoming a serious problem now, not some 10 or 20 years down the road as other docs/profs have previously been saying. He was speaking from front line experience and seemed very sincere in what he was saying. A while back another of my GPs told me that the type of e,coli bug that is the most common one in my particular UTIs has become resistant to 2 types of antibiotic that used to kill it - I think trimethorprim was one of them.

    I won't let things spoil my christmas, hope you and all on this board have a good one too.

    edit......Rheumy can do little for me unless I go back on immune suppressants, though I have been supplied with wrist splints and a couple of aids to help around the house. I've recently forked out on an electRic riser recliner chair which makes things a lot easier, especially getting up from sitting as the pain in my knees can be excruciating on times. The only meds I take for RA are slow release tramadol combined with paracetomol...seems to be more effective than tramadol on it's own, naproxen though I keep this to a minimum due to a previous heart attack, albeit a mild one, and hydroxy which I started 3 months ago but it doesn't seem to be helping much.

    The above meds do help a bit but are nowhere near as effective as mtx let alone enbrel, which worked wonders for me for the 3 months I was taking it.

    I can't take steroids in any form as rheumy told me they are also an immune suppressor.

    Need to finish up for the night as I'm dog tired - that's another thing I'm finding since stopping my RA meds.

    Goodnight all

  • I really don't understand why they don't do more swabs of bugs - especially when one antibiotic has failed to clear it. Where I used to live out of the UK it used to be common practice to swab and do culture and (drug) sensitivities and if definitely meant less antibiotics used as you were more likely to get the right one. Like you, I would also worry about resistant bugs. I know I harbour MRSA, so any skin infections can go really rampant very quickly, and it requires not just oral antibiotics but also nasal ointment antibiotics (because MRSA is often harboured in your nose) for me to get them under control.

    I think you are well within your rights to ask for a swab - just tell the doctor you are very concerned that the antibiotics aren't having a lasting effect and you want to be sure you aren't taking the wrong ones. Remind the doctor how long this has been going on for, and what has happened previously.

  • Probably down to cost. But it will probably end up costing more in the long term by having to use more antibiotics as you say, and the extra expense of treating complications due to resistance through overuse.

    Interesting what you say about harbouring MRSA. I wonder if I'm also harbouring some type of bug, maybe the one that caused my sepsis. Will have to inquire about that.

    I will be having a chat with my doc. when I see him next friday. Just hope he's more forthcoming this time

You may also like...