Amoxicillin or not ?

Healthy Easter everyone ! Had a good run this last month or so and had some time off ! Any way I presume the old WBC has decided enough is enough and the sinus and throats probs have kicked in ready for Easter ! Throats a bit worrying though ... Not sore just feels like a tight compression around my Adam's apple region ? Anyway off to see the emergency Doc shortly as as much as I've tried to 'push on through' this last week I woke this morning knowing an anitibiotic could potentially be the order of the day.. My question to you consistantly, brilliant, reliable folk here is which one ? ( I realise the Doc has to take a look at me first etc ! ) .. However, in the past, when suffering with similar symptoms ( not had this 'kind' of throat feeling before I might add ) I've alway found amoxicillin reliable - The last 6 months of visits with my Doc has suggested otherwise as he saying that Amoxicillin is not being recommended by 'the lab' for me, despite me having a course since and it kicking in immediately and feeling much better sooner rather later compared to the ones that have been recommended ( My weak spots are Sinuses or bladder FYI ) Does any of this make sense ? Finding it difficult to articulate this morning... Surely I know better than anyone how I'm feeling and on what medication ? Thank you in advance - Jools x

20 Replies

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  • Hi Jools,

    I usually take Amoxicillin but there's been some discussion on here recently about whether it's the best option for some CLL'ers who may suffer a reaction to it. My GP continues to recommend it however and I have an emergency course on stand by. I'll continue to use it as I suffer no adverse reaction to it and it also works for me.

    You will find the link from Chris useful on this;

    Specific members of the penicillin family have been identified with particular adverse reactions: ampicillin, amoxicillin, and amoxicillin/clavulanate with diarrhea and C. difficile colitis, as well as rash when prescribed to the patient with chronic lymphocytic leukemia; nafcillin-induced neutropenia; carbenicillin and ticarcillin (with/without clavulanic acid) with hypokalemia, platelet dysfunction, and fluid overload; and methicillin and ampicillin with interstitial nephritis.

    medscape.com/viewarticle/41...

    healthunlocked.com/cllsuppo...

    An alternative he recommends especially for throat issues is Erythromycin but it's a discussion you'd need to have with your doctor when you see him. That a wise move I think in view of your symptoms.

    The only antibiotics I absolutely would refuse for this would be Quinolones such as Cipro or Levaquin etc. The FDA Black Box warnings on this group of antibiotics are now well known. I wouldn't want to take any possible adverse reaction risks with this type of antibiotics unless there were no other 'safer' alternatives available and the infection was life threatening,

    center4research.org/medical...

    Hope you're feeling better soon. In view of the feeling of compresssion around your throat, I think you need the cause investigating. Hope you feel better soon and apologies if my reply is a bit disjointed, fatigue is affecting my ability to articulate this morning too!

    Regards,

    Newdawn

  • Thanks Newdawn ... I've just seen the 'emergency Doc' and come away with the amoxicillin - I'll see how it goes over the next few days but book an appointment to see my own doctor re throat compression ? ... In the mean time some useful 'cut & paste' info here and further reading ! I always feel so much better and grateful when sharing, 'my' little 'niggles', by comparison to others here... Such a great resource ! Hope you feel a bit more energised soon and have a cracking Easter 🐣 x

  • Hi Newdawn, hope you will soon feel better

    I get a bit scared when I see the warnings about the quinalones, as I am pretty sure I was given this in hospital last December. It worked well, but I'm not sure what after effects I should look out for, if any. It was just called an antibiotic and I didn't query it.

    Chris in Wales

  • Hi Chris, to be honest, thousands and thousands of people do use Quinolones every year and they're widely prescribed in the States. Side effects are not inevitable but as it seems impossible to know who would react badly to them, the advice seems to take with extreme caution. One of their main side effects seems to be an adverse impact on tendons. @Sparkler is the expert on these meds having been badly affected by them herself.

    I wouldn't stress about it now as it may not even have been a quinolone you had. I've never been offered them in the UK to be honest and their usage in hospitals seems to be for very heavy duty infections because they are hard-hitters!

    Hope you are keeping well too,

    Newdawn

  • Thanks for the reply, Newdawn. It was ciprofloxacin- I'm assuming this isn't the same? Relieved!

    Your replies are always so reassuring, when you are going through so much yourself. I really appreciate it, thank you.

  • Hi Chris

    I came across this thread by fluke (Newdawn's tag didn't alert me, I'm afraid) but I couldn't help noticing the mention of Quinolones, which I then can't ignore.

    I'm not saying too much, as this post's not restricted, so please forgive me if I don't give a comprehensive reply, though I'm not good at 'concise' 😉

    Ciprofloxacin is a Quinolone and the most widely prescribed in the UK.

    It is still used extensivly in hospital settings, as a prophylactic during and after surgery, no matter how simple or routine and is the common 'go to' antibiotic, if you present with unknown but suspected infection at A&E. It has been associated with the spread of C.Diff, which is the only reason some hospitals are holding back a little with quins.

    There has been a very slight and I do mean slight, reduction in its use in Primary Care, as GPs are being encouraged not to prescribe it, especially for simple UTIs or Respiratory Infections. Many GPs are unaware however, of the dangers and fail to recognise ADRs in their patients and they still prescribe innapropriately.

    Many people do experience Adverse Reactions and as these can be delayed (not appearing for months after stopping the drug) often they don't realise this is what's happening. Unfortunately, these ADRs are not 'rare', as described in the PILs but actually are very common. The effects of quins are cumulative, so the more times you take a course, the more likely you will be to experience ADRs.

    The European Medicines Agency is reviewing the safety of Quinolones at present, due to pressure from patients in Germany and we are meeting with the MHRA next week, to raise our concerns.

    Quinolones/Fluoroquinolones should only be prescribed as a last resort and where all other antibiotics have failed. The US is ahead of us in the UK and unfortunately, the MHRA has told us that it doesn't take any notice of what the FDA decides but only takes its lead from the EMA. As we are about to leave the EU and the EMA is now moving its headquarters out of London and out of the country, UK patients will be left in a very precarious position regarding quins and drug safety in general, with only the MHRA to monitor safety and they are not known for action...

    Best wishes to all and be well

    Love

    sparkler x

    N.B. If you do need to take any Quinolone antibiotic, don't take either Steroids or NSAIDs concurrently, as these can make adverse reactions worse or may well kick start them.

  • Thank you so much for your comprehensive answer. Unfortunately I hadn't noticed it wasn't locked.

    I started getting anxious, but have decided I have enough to worry about atm, without adding that to my woes!

    I will eventually break my rule and google it, to find out what I need to look out for.

    I appreciate your reply, thank you again.

  • I used Amoxicillin and it removed all the good bacteria from my digestive system..

    Thus many problems with IBS and then having to rebuild the bacteria to obtain a decent microbiome.

    We are all different, but I would advise caution. as 'Newdawn' has also written.

    Dick

  • I recognise the problem. I use the FODMAP diet as recommended by my hospital, along with a pro biotic available in the UK called Symprove which gets through the stomach first thing in the morning and has passed medical trials.

  • Hi Dick

    Thank you for your reply.

    Bacteria noted - 'Rock and a hard place' springs to mind - I do try and keep a careful eye on my diet re 'gut' bacteria particularly when taking antibiotics. And take pro biotics ( negligible 'health benefits' I know -But I do like the taste ! ) and 'Kefir' regularly - Although, as I've read, there are risks associated with these 'healthy' additions particularly for CLL'ers ? But as with the Amoxcilian I personally have felt so much better with them included in my diet than without ... For now ... 🙋🏻

  • Sorry to hear you're not well. I've read about amoxyicillin here too. I've had many chest infections and am always prescribed this.

    Hope you're feeling better soon.

    Peggy

  • Hi Juliette02,

    I hope your throat problem soon resolves and you feel better, and less concerned, soon. Your post highlights the problem, for me, of when and if to do anything when a possibly viral health niggle kicks in.

    I'm on Ibrutinib and doing well. For the last week my throat has been a little raspy, but being one of the old school, brought up with a deep seated belief that the body in general will heal itself, when such little niggles occur I am faced with the dilemma of just soldiering on, or to take action. In our case by phoning 111 and discussing the problem with the NHS ambulance staff.

    Usually, for me, such little niggles resolve themselves, but very occasionally I am caught out and 'told off' for not contacting the NHS earlier.

    Should we always ring in with every health issue or wait and see?

    Answers on a postcard, please!

  • I think I am old school too. I never took antibiotics before CLL but thought I had better do so when I got a chest infection a couple of years ago. No problems then, but a year later, I got a rash after starting a course of Amoxcyllin. Since then I have not taken anything, but I now have a bit of a chest infection which refuses to go away after 3 weeks, although it appears to be 'low level'. Pre CLL I would get a full-blown cold, but it would be over in a week. I am seeing my consultant on Wednesday so will see what he says. It is a difficult call knowing when to try and let your immune system take care of an infection, or take the antibiotics and risk possible side effects. I am still in W &W.

  • If you developed a rash after taking amoxycillin be sure that any doctor you see is aware of that. It could be that you re allergic to penicillin.

  • Thanks - I have added it to my medical ID on my phone and in my wallet.

  • Hi David

    It's difficult and have been delibitating 'a visit' for over two weeks now ... However,like I said, this past week I have felt like I'm at 'a tipping point' ( Nothing drastic Just a feeling that if I don't ask for 'help' (or at least get checked out ) I'm going end up in bed not able to work properly and enjoy a few trips out etc ... January & Feb had been such miserable months for me with one thing after another ... Had a 'wonderful' March so I suppose I'm 'desperate' to hang on to that feeling 😊 I've woken up this morning and while not leaping around like an Easter Bunny I do feel 'better' after only a couple of tabs so far ! I think the more I learn and understand about this 'illness' the more I realise I now inhabit a different playing field with a new set of 'rules and regulations'

    'Should we ring in with every little niggle'

    Well there's the good folk here to compare notes etc - And my Doc,fortunately, is very kind and reassuringly says anything at all anything, call us - But I do try to stay 'realistic' ...

    I think we become or can become more atune to our 'own' bodies and what really isn't going to go away on its own ... As indeed do our significant others .. My partner always says to me I know when you're not 'that good' Jools I can see it in your eyes ! As indeed he can when I'm not best pleased either :-)

    Mind you my eyes did light up this morning when he brought through a lovely Easter Egg with my breakfast ! No wonder I feel better ! 🙋🏻

  • Here's my little postcard answer David.

    I don't think we can automatically assume an infection is viral and of late I've rarely had a viral infection where bacteria hasn't joined the party.

    From my experience I'd never again phone 111 because a doctor failed to recognise/react to sepsis (despite all the warning signs) and they can take so long to return calls that an emergency can develop waiting for their response. I appreciate others will have had better experiences. I'd now simply present at A&E if it was potentially serious or see my GP or go to a Walk in Centre out of hours for medical advice.

    I'm like you too, stoical old school but I'm a recovering martyr these days and refuse to rely on my busted immune system to rescue me. What's 10 mins of a doctor's time in relation to my possible survival?

    I'd also suggest doing our own basic obs at home so a reliable thermometer (and knowing what's normal for you), a b/p monitor with pulse reading and a little meter to check on oxygen saturation levels. Plus, for diabetics, a glucose meter. Plus...trust your instincts.

    This doesn't mean rushing off to the doc with every twinge but anything that persists has the potential to proliferate wildly.

    My view now (perhaps a hardened one), is, if you'd advise a fellow member on here to seek advice, take it yourself too!

    Sorry I've filled up that postcard :-)

    Newdawn

  • A beautiful and very valuable postcard Newdawn, thank you.

    David

  • Great response! A cousin, a post transplant survivor, recently waited on a cold. He ended up with pneumonia. I am much more likely to make a call if I suspect something is off, and my PC knows that I know my issues and when to call pretty well. I would ask about the comment about the labs indicating something else would be better than amoxycillin. If a culture has been done and the results are back it will indicate the specific infection and which antibiotics are most likely to work. Amoxycillin works well for many for respiratory infections, but is not usually the best choice for UTIs or cellulitis infections. Fungal infections are a whole other issue.

  • Happy Easter to you. I can't answer the antibiotic question but just wanted to share with you that I started with enlarged lymph nodes in my neck last October 2016. One of the most unpleasant feelings was a constriction in my throat which was really scary. It was like cramp and took a few seconds to subside that felt like minutes. I should definitely mention this to your oncologist.

    Best wishes

    Sally

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