And So It Goes...: So, I described my symptoms to... - PMRGCAuk

PMRGCAuk

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And So It Goes...

77 Replies

So, I described my symptoms to the Pharmacist, yesterday morning; and get this... she suggested I "KEEP TAKING" the antibiotic; if the reaction continued, I should ask the doctor to change the prescription!

🤔 "Hmmmm, okay. That doesn't sound quite right, but..."

After much internal debate, I stupidly, took the third does of the Macrobid® (nitrofurantoin monohydrate) and no surprise... same result! My face and eyes became swollen and flushed, upper chest bright red and hot. Headache with neck and shoulder pain. I was lethargic and felt like crap within an hour or so.

I called Surgery's Reception Desk round 1:00 and explained the problem. I was told a Nurse Practitioner would call me back after 2:00. When she called, she listened to my sad story and told me to STOP taking the antibiotic immediately, She would note my records to say I was "sensitive" to nitrofurantoin!

Finally, a voice of reason...

She then asked how many doses I had taken; my response was "three." She said, "Well, the normal course for antibiotics for a UTI, is 3 days. You've done half a course... so perhaps that's enough."

I, being just slightly confused and way over hydrated, responded, "...but, ummmm, the doctor prescribed a 5 day course and I've only taken 3 pills?"

To which she responded, "I'm not sure why he gave you 5 days... as it's not necessary. Just drink plenty of water, at least 2.5 litres per day, and if your symptoms return... give us a call."

Seriously??? The Nurse Practitioner gets to override the doctor's orders?

Don't get me wrong, I am more than happy to STOP taking Beelzebub's Poison caplets, but do I want to take a "wait and see" attitude and risk the UTI symptoms coming back, especially so close to the weekend?

I have upped my Pred (25 mg) because I still have a raging headache, neck and shoulder pain and feel like crap... It is most likely just stress, the fact that my body's trying to fight an infection, and the residual effects of that ghastly drug, but it sure as hell feels like a flare to me! F**K, F**K, F**K.

I will get through today, drinking (and peeing out) at least 2.5 litres of water, and when tomorrow's "same day appointments" open up, online, I will be making another appointment with a DOCTOR to see what the hell I should be doing!

Why, oh why is NOTHING ever easy and straightforward?

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77 Replies
PMRpro profile image
PMRproAmbassador

Under the circumstances I think the nurse got the important bit correct - STOP!!! Those are allergy signs - and they will only get worse and you run the risk of developing something REALLY nasty.

However - why will doctors not do cultures to be sure they are using the right abx rather than using a sledgehammer to crack a nut?

And I think you are probably right about flaring - but I would also suspect it will fade again when you get rid of the UTI.

in reply to PMRpro

Thank you PMRpro. You're right... She (the Nurse Practitioner) had more sense than the Pharmacist! ...but not sure stopping after 3 doses was the right answer either.

I guess the urine dip strip test was easier, faster and cheaper than the culture... and the Macrobid must be on offer this week! 😉

PMRpro profile image
PMRproAmbassador in reply to

You are supposed to do both!! Was it the pharmacist you spoke to - as opposed to an assistant? I'd be a bit concerned about a pharmacist not recognising signs of an allergic response - above all the facial swelling and rash.

in reply to PMRpro

YUP! Definitely the Pharmacist, as I asked to speak to the pharmacist and she said "Yes, my name is such and such and I am the pharmacist."

Shocking right?

PMRpro profile image
PMRproAmbassador in reply to

Hum. Was it a chain pharmacy or a local independent?

in reply to PMRpro

It's located in the Surgery building and goes by the same name as the surgery; Charter Medical Pharmacy. However, I just looked looked them up and they are Ackers Chemists Ltd. Their "About Us" says, "We are a group of independent pharmacies based throughout Kent and East Sussex."

Rimmy profile image
Rimmy

Goodness gracious what a 'b*lls up' Melissa i do feel very 'sorry' for you - you just don't need all this. But guess what - I have never been allergic to any other drug in my life except for 'Furadantin' which I now see is what you were given. It was at least 30 years ago I had a UTI and the doctor then gave me this drug and I felt like I was flying through the air and was very wobbly on my feet. I don't now recall the details or if I even finished the course but I always tell medicos when they ask me about known allergies - 'Furadantin' !!!' I guess I was fortunate not to have some of your much more unpleasant reactions but at least we can 'share' an allergy Melissa - not funny but maybe comforting !!

XXX

in reply to Rimmy

HA! Yes Rimmy, we are Furadantin Soul Sisters! It is nasty, nasty stuff for sure, though!!!!

Flying through the air would have been a welcome side effect, as I felt like I was being pulled into the bowels of hell!

Primarose profile image
Primarose

Gawd knows what might have happened if you took any more of those lethal pills. It is going to take your bod a while to adjust after this, it's been put under tremendous stress.:-( Maybe the preds will help, I do hope so.

Take care.

in reply to Primarose

Thanks Primarose. Yes I am resigned to the fact that I must just rest and drink lots of water... weird though this is EXATLY how I spent this very same week last year... on teh couch with my duvet. Deja vu all over again.

Primarose profile image
Primarose in reply to

It's weird int it. Deja vu can be quite scary at times. I've had those feelings and knew exactly what was going to happen next.

Telian profile image
Telian

I'm no doctor but you are allergic to the Nitro........thank goodness you've stopped it. I doubt you'll get away without another 'script - we need more than 3 days with our compromised immune system - that's never enough for me and guess what the 'lovely' GP I saw yesterday only prescribed 3 days and I know it's not going to be enough - especially with a weekend coming up so am going to click the button on line for another 3 days and get my hard hat on as my trusted GP isn't in. Like you my 'flare' is raging but I'm to have my bloods taken today (went up first thing to be seen as urgent - paid for parking to be told come back at 12.30 that's the only slot as short staffed - only two phlebotomists on - the waiting room was heaving,) and Professor will decide whether to up the steroids depending on the results, he says the UTI is not helping. He rang me yesterday as couldn't fit me in clinic today, how's that for service! Still feel crap.... How strange we're going through exactly the same problem - must be something in the air! Take it easy - Kalma - it's my Tai Chi today and want to go but blood test is half hour prior - will I make it?.....what a day carrying on from yesterday like you.

Hope you feel better soon. xxx

in reply to Telian

Oh Telian, I am so sorry you are going through this!!!! It's horrible and you have flare as well! 😢 Yes, get that Hard Hat on, as I will, tomorrow when I go back to GP. For today, I'm happy to be off with the drugs (except my trusted Pred!) and just laying on the couch drinking water! I'll pick up the fight again tomorrow. Feel better my friend and don't let the Bastards get you down! xxxx

Telian profile image
Telian in reply to

You too - you too! While all this is going on the local clinics have decided not to take used sharps containers any more, hubbies diabetic, so took it to the hospital in trusted carrier bag as I'd been told they will take them, and guess what - you're right- they don't! Council don't - it was said they do - doctors don't - no surprise there so my little carrier bag came home - again -ce la vie! Another mission to test us. xxxx

in reply to Telian

OH MY GOODNESS! It's always freakin something.... what will you do with them????

Telian profile image
Telian in reply to

Probably put some tinsel on it's as it's Christmas! - not really. Have spoken to my trusted contact, who used to work for me in the NHS, and have been given names of clinics that are still taking them - it will mean a car ride but needs must, at least I got a 'script from docs for replacement bins, which used to be part of the exchange service too. Don't know who's bright idea it all is but might put a letter in our local rag to ask who out there is going to take responsibility - I used to work in this environment and know all the back routes etc but others won't and it concerns me about the elderly an infirm who shouldn't have to be dealing with this - it's not fair on them to be given the runaround. xxxx

in reply to Telian

You have more energy and positive chutzpah than I ever did or will have!

GO GET EM!!!!!!

Telian profile image
Telian in reply to

I've always been one to want to finish an argument but not any more - so I blame it on the pred now - my family do! I was in Tesco's car park the other day and this pair of drivers were having a head to head and we couldn't get round them sooo - this is her that's never used her car horn as it's too hard to press, guess what I pressed it and held on...my son was with me and nearly jumped out of his seat saying 'thought you couldn't press the horn' needs must my son needs must - then proceeded to ask if I was alright as acting a little aggressive...the rest is history as they say - day before the flare and UTI took off. xxxx

in reply to Telian

🤣🤣🤣 . Good on you!!!!

PMRpro profile image
PMRproAmbassador in reply to Telian

If they don't sort it out there will be bins dumped on roadsides etc where children will be able to find them. Time for a call to a local paper methinks...

Telian profile image
Telian in reply to PMRpro

Exactly - no time for heraldry this is totally unacceptable and irresponsible decision - someone somewhere has decided it a good idea to offload the funding without further thought of consequences. They will get there act together.

in reply to Telian

Had this one T. after my colon surgery with Heparin injections. Drs no! Chemists no! Hospital no! Unused ones No!! Eventually found that the council did a special collection of sharps. Not sure whether that happens now with the cut backs.

Must be bleeding obvious where they go in the end! Not good is it!!

in reply to

I am utterly astounded by this!!!!!!

in reply to

Yes M. it's shocking! Another game of pass the parcel!

Nothing to do with me Guv!!

in reply to

Un-freakin-believable!

in reply to

No link up with different services all fighting for their own funding or profit & ducking environmental responsibilities!!

PMRpro profile image
PMRproAmbassador in reply to

Nothing surprises me any more...

Telian profile image
Telian in reply to

The council are not taking responsibility even though there details are given out by pharmacy - I will get it sorted out as long term use. Cheers are you okay?

in reply to Telian

"Skipping" T. Lovely view from top of Lickey hills today. Always love the conversations with others seeing the beauty.

Telian profile image
Telian in reply to Telian

Made it to Tai Chi, helped calm me...was half hour late thought the 12.30 blood appt was 30 mins late...the worlds gone mad....got a text while out to say parcel had been successfully delivered - great - hubby must have taken it in just before he went to bed - no such luck - no card to say where it had been left and hubby did not hear the door bell - chasing Royal Mail.....wish the world would leave me alone today!

in reply to Telian

Never mind T. It all seems to conspire against us when we feel crap! You have a lot to deal with outside of your health problems too! Tough it is. Strong you are. ATB

in reply to Telian

Oh noooooooo. I hate when that happens and it seems to more times than not!

PS - you went to Tai Chi with a UTI?????? You are a crazy woman!!!! xxxxx

Telian profile image
Telian in reply to

i know what you mean but I was on 2nd day antis, albeit slow working, and paracetamol so I was able to walk. My son questioned me going but knows if I was even thinking about it I was improving. I have a high pain threshold. On top if it all my BP is really high and I felt the class would help me relax. Am seeing my usual GP today as rheumie instructed me to re BP yesterday they reiterated risk of stroke if not dealt with - so walked to the surgery this morning to ensure getting an appointment. The UTI is still there and I only have one dose left. Like you only given 3 days - not enough. Have you got an appointment today? How are you feeling? From crazy woman. X

in reply to Telian

You amaze me!!!!!

Twopies profile image
Twopies

Life is hard. Ceflin (I think that’s what it was) got rid of my raging bladder infection pronto. Be sure to go back to doc in couple days to check urine again.

in reply to Twopies

Thank you... yes I will for sure.

What concerns me the most is if you HADN’T already been on Pred your reaction could have been much, much worse!

Because Pred/Hydrocortisone is what they’d have given you for a reaction like that!

When l was on Chemo they gave me Dexamethasone about an hour before & for 3 days following each session, then when they changed the Chemo, to one notorious for its side effects, they gave Dexamethasone for three days before & after so your body has a fighting chance if you react badly!

Hope you’re feeling better today 😘🌺💕

Angela x

in reply to

OMG I did not think of that!!!!! That's true!!!! I will be speaking to the head Pharmacist later today! 😡

in reply to

It’s a very sobering thought, my friend! 🌺

patriciawhite profile image
patriciawhite

I wouldn't take notice of that pharmacist again ,I would hope the pharmacist would be very aware of allergic reaction signs ! Make sure you get in to see someone before the weekend causes another problem for you . Fingers crossed that the extra pred at least helps ,I do hope so It seems never ending for you . I am really praying for some relief for you soon .

in reply to patriciawhite

Yeah, me too. I am going in at 10:00 today. Thank you, thank you so much!

Pharmacist's! 1st line of prescription expertise we are informed in the UK! Only as good as the individual as always!

Should be on "Pointless" that one! Playing it too safe maybe under instruction!!

in reply to

Only as good as the individual for SURE!

Xanthe12345 profile image
Xanthe12345

Hi Mamic I was also prescribed this antibiotic earlier in the year for uti. After second tablet I was shaking uncontrollably....felt sick and felt ill all the next day. Rang surgery and was told to stop of course I already had.managed to see doctor and she said I was allergic to that particular antibiotic...I also insisted that 500mgs didn’t help as I am only 5ft tall’ she agreed that any future prescriptions would be a much lower dose! Do we blame the pred! Lol

Hope you are ok now😁

in reply to Xanthe12345

You were given 500 mg???? I was to take one, 100 mg cap, twice daily and that almost killed me!!!! 500mg!!!! OMG! You poor thing! Thank you, yes, I feel much better being off that crap for 36 hours now... and drinking more water than I have my whole life! I will see GP at 10:00am to see what I should do now. New meds? No meds? I have no idea...

Xanthe12345 profile image
Xanthe12345 in reply to

Cefalaxan was what they prescribed next at 250mgs. They worked a treat. I never took the full course as I decided to keep a few days to take at the first sign of uti. So far so good!

Xanthe12345 profile image
Xanthe12345 in reply to Xanthe12345

Hope you are feeling better now😀

in reply to Xanthe12345

Not really, but thank you. The worst of the symptoms are not there but I know something is ROTTEN IN DENMARK!

Footfairy-1 profile image
Footfairy-1

Oh Mamici, I feel for you. I really hope you feel better very soon and that you don't need anything else for the uti. Let us know how you get on.

Thinking of you and sending hugs and healing thoughts 👩‍❤️‍👩

in reply to Footfairy-1

Thank you Footfairy-1, I appreciate that! Seriously, If I don't laugh at all this, I'd be hysterical! Cheers.

Grants148 profile image
Grants148

Yes mamici you must stop taking this antibiotic,the pharmacist was out of order,an allergic reaction that causes swelling around the face can be dangerous and even life threatening.l hope that your doctor can give you a different antibiotic for your infection and that you will feel better very soon xx.

in reply to Grants148

Hi Grants148, I stopped yesterday (Wednesday) at 10:00 am... by Thursday late afternoon I was feeling MUCH better! I am almost back to normal now early (Friday). Thank you so very much!

Valnvaughan profile image
Valnvaughan in reply to

Please get a supply of Mannose ready to try should UTI creep up on you again. Type sweet cures into google to read all about it. NO NEED TO SUFFER!

😰😱🤢😬Valerie

in reply to Valnvaughan

...but does it really help get rid of existing infection or does it help prevent new infections? Some of what I read indicated that it may help "prevent" future infections...

Valnvaughan profile image
Valnvaughan in reply to

There are different doses to tackle existing infection take regular higher doses till it’s definitelt gone. But for maintenance / preventative care take a low daily dose ( I do this for about a week after infection cleared, then stop. But some take all the time. )

From same company I bought my own supply of dipsticks too.

Valerie

Mks9558 profile image
Mks9558

OMG - now we all need pharmacy & medical degrees- Looks like I will have to go from Program Director at a tech company to medical director at home healthcare.

So glad the NP told you to stop- what the heck is wrong with all these people! Hopefully you will be comfortable and won’t have any more “Eh hmm” issues before you see doctor again.

Feel well!

in reply to Mks9558

Hi Mks9558, Hey, I was a Program Director in a technology department at Amex! Small world!

I'm seeing the doc at 10 today because I don't think I should have stopped the meds after 3 doses... I think the meds should have been changed to something else... I just know "it" will come back to haunt me!!!!

Mks9558 profile image
Mks9558 in reply to

Best to get it under control before the weekend- it’s the blind leading the blind I swear... you have to stay on top of everything and take nothing for granted.

Good for you for pushing your health first.

I manage global strategy for partner events for a large chip company. At least that is what I was doing until 9/17...

Good luck at the dr today!

in reply to Mks9558

Cheers Mks9558!!! It's a freakin minefield!!!!

Sandradsn profile image
Sandradsn

I took a bag of out of date meds to the local pharmacist today,she took them and gave me the filthiest of looks!! Charming!😲😤

PMRpro profile image
PMRproAmbassador in reply to Sandradsn

Did you call her out? What else are we to do with them? I have a bag from the last 10 years or so - OH took his down to the pharmacy the other day but I forgot mine...

karools16 profile image
karools16 in reply to Sandradsn

I took a bag today, and assistant asked if any needles in it? Usually, just take and say nothing, but this is a school leaver..nothing against that..

in reply to Sandradsn

I hope you gave "a look" right back!!!!!

Chrob profile image
Chrob

I swear sometimes it feels as if we are rolling along on a wing and a prayer.

in reply to Chrob

REALLY!

Blearyeyed profile image
Blearyeyed

Hi,

So sorry to hear of this disaster after all the other stuff, I am amazed at your fortitude.

I am just finishing a long process of coming over a UTI.

I was originally given , two three day courses of a drug called Trimethropim , 200mg , twice a day for three days is the usual course. It works in one course for most , unless like me you have immuno deficiency complications .

It does not seem to have the ingredient you are allergic to. Active is Trimethropim. Others, lactose monohydrate, povidone K25, crospovidone , sodium starch, magnesium stearate.

Only says to be careful if you are on rifampicin, warfarin, ciclosporin, digoxin, phenytoin, pyrimethamine or bone marrow depressants.

You would still need to be treated if you needed antibiotics in the first place, finishing a successful course is vital to prevent the infection from returning .

Perhaps you could ask to be put on this by the GP.

Or if you are unhappy with their laxidaisical attitude it is possible to purchase it from an authorized UK pharmacy online , after filling in a short questionnaire seen by a doctor for the prescription. It costs between £18-£25 for the three day course and is delivered in 24 hours, if you don't want the hassle of the GP route again, just let them know what you allergy is in case it is an ingredient that was strangely left off the list. This is the common go to antibiotic for cystitis/ LUTI.

I wouldn't leave it to fester on , the strain on your body dealing with infection will have a toll on the PMR and the amount of time you might need to up your steroids .

Take care, keep warm and I hope this helps.

in reply to Blearyeyed

All true and all good advice, thank you! I am seeing GP at 10 today... fingers crossed. I hope you are feeling better!

Blearyeyed profile image
Blearyeyed in reply to

Ha, ha, ha !!!

You just read my post so you know the unfortunate answer to that one , but we will survive!!!

Much love Be x

in reply to Blearyeyed

💐 yeah... I do. xxxx

MamaBeagle profile image
MamaBeagle

Keep drinking the water Mamici! My mother had a chronic UTI which literally lasted decades! She always seemed to be asking the doc for a prescription for her trimethoprim, When I became her major carer I got her on to the 2.5 litres of water, water she had only previously taken "neat" as a nursing mother! But the water worked and she never needed another prescription for trimethoprim, RESULT!

in reply to MamaBeagle

Drinking for ENGLAND MB! Drinking for England! Thank you!

MamaBeagle profile image
MamaBeagle in reply to

I so hope it works for you xx

Marilyn1959 profile image
Marilyn1959

Melissa,

You need to write a formal complaint re the pharmacist advising you to continue to take a drug that clearly you had an allergic reaction to. Your reaction could have been fatal. You have lived to tell the tale. The next unfortunate person might not be so fortunate. I am not being hot headed, just know of someone for whom a reaction to an antibiotic did prove fatal.

in reply to Marilyn1959

Yes, I have decided (after all the comments here) that I will make a formal complaint later today when I go in to see the GP... I was lucky (and stupid) but you are right the next person might not be so lucky!!!! Cheers Marilyn1959

GerriMc profile image
GerriMc

Sounds awful! If only to give you some comfort, I suggest drinking Lemon Barley water. I think Robinson’s are still making it. Dilute it with hot water. I used to have awful recurring UTIs years ago and it was the only thing that eased the pain. Hope you get some relief soon! X

Grants148 profile image
Grants148

Pleased you are feeling much better mamici x.

villanelle34 profile image
villanelle34

I took exactly three doses of this demon drug with my last dose being maybe two days ago...silly me kept thinking oh my body will get used to it and stop making me feel like I've been kicked in the stomach/chest repeatedly then given a nice healthy dose of motion sickness lol.that never happened, I couldn't get out of bed so after the third dose I said OK I'll take the uti over this and didn't take any more...but I still feel shaky and chest/stomach issues ,almost feels like the kind of feeling you get when you have completely empty stomach but mines not empty..and strange aches in bones of certain areas like my wrist and side...what the heck is in that stuff?

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