Past my sell by date!: thanks to our PMR pro who... - PMRGCAuk

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Past my sell by date!

AnniesRyder5 profile image
65 Replies

thanks to our PMR pro who identified the awful buttock pain I’m still experiencing.

However a couple of days ago I also developed the easily recognisable symptoms of cystitis!

As most of you will know the pain is horrific- feels like my vulva is being split.

I’m taking pain killers but these are then followed by gaviscon due to the inevitable reflux .

And of course antibiotics are the quickest answer - - I think! But I just can’t get them.

I rang my HC yesterday and I was told there were no slots available so I rang 111

They made a referral to my H C last night.

I’ve just rung my HC again and I was told some one will contact me in 24 hours! I could scream - with frustration and pain. But only your Gp can prescribe antibiotics apparently.

I do appreciate there are many people in worse pain but the accumulation of annoying ailments is just getting me down . The prospect of trying to get a night’s sleep combined with agonising attempts at urination !

Anyone any ideas?

Ann

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AnniesRyder5
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65 Replies
Sophiestree profile image
Sophiestree

Do you have a prescribing chemist near you? You could try them? Or MannoseD but sounds like that might be too late of you are that uncomfortable.

AnniesRyder5 profile image
AnniesRyder5 in reply to Sophiestree

Thank you and isn’t it ridiculous that with all the pressure on the nhs I have to wait for someone to contact me !!!!

Sophiestree profile image
Sophiestree in reply to AnniesRyder5

I do think it's a postcode lottery these days. My GP surgery now only do an online form rather than call but they get back to you that day. I filled it in yesterday to ask for my repeat medications to be updated so I could order on line (which was in no way urgent at all ) and they rang me 2 hrs later! Go figure.Same happened with my daughter for eye problems and an infected bite where she got a triage in the local community centre by a paramedic that morning. I'm not knocking it, as I know many around here hate the online form but personally I'd rather fill that in than sit on the phone waiting for ages and then have to go through everything.

I hope you get sorted today though. The sooner the better with that!

AnniesRyder5 profile image
AnniesRyder5 in reply to Sophiestree

Thank you and I’ll let you know

X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sophiestree

Depends how difficult the question is - some things can be actioned quickly and easily by surgery -others cannot.

I have no issues with online -but then I happy using technology and don’t have serious health concerns -not everyone is in same boat.

Sophiestree profile image
Sophiestree in reply to DorsetLady

Agree completely

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sophiestree

Can’t recall the last time I actually had a F2F conversation with a GP - and only a couple of phone calls since way before covid,

Go into surgery building every month to pharmacy for repeat meds -and see HCA or nurse occasionally. Know I’m lucky…

Sophiestree profile image
Sophiestree in reply to DorsetLady

Just to add they do still take calls for people who are not good with technology and hope that works for them as it must be really stressful for them.

SheffieldJane profile image
SheffieldJane

Your symptoms sound pretty severe. I hope the 111 call provides a result. I was seen pretty quickly having been through their triage. What painkillers are you taking? I am wondering if they are aggravating the problem? I have only found plenty and I mean plenty of fluids, Mannose -D Waterfall and paracetamol to be of any use. It is also key to empty your bladder completely each time you go - this may mean waiting and Trying again - the double void that PMRPro advises. Also ensure that your clothes washing products are not irritating you - look for the gentlest. A friend has a hot water bottle on her lower abdomen and says it helps - although you would boil in this weather. Good luck it is miserable and mature women are prone to it.

AnniesRyder5 profile image
AnniesRyder5 in reply to SheffieldJane

Thank you Jane FB or the good tips - I am taking paracetamol regularly but I wasn’t aware of the D mannose and 111 certainly didn’t suggest it!

I shall get some x

PMRpro profile image
PMRproAmbassador

Get some D-mannose and take a decent dose at least 3x daily

verywellhealth.com/d-mannos...

I take 3x 500mg capsules 3x daily at the start. Some sources suggest double that or 3-hourly. It has worked to stop infections for me in the past even once they had started although I have never been that bad.

I was under the impression that nurse prescribers and pharmacists were able to prescribe abx for UTIs. I certainly got abx at the local MIU when visiting my daughter - and it didn't have a GP on site. If they are going to be that precious - they need to have emergency options rather than letting a UTI get properly established.

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

It seems so archaic to go through this routine and thanks again for the tip

X

Blearyeyed profile image
Blearyeyed

The point is you have a chronic health condition that could flare and get worse if you don't get speedy help for what people with no health issues might think of as "minor".By getting treated for any other illness or infection early you are preventing your condition becoming serious and putting back your recovery.

Oh , and my Nana never believed in Sell By Dates , and the supermarkets are following her opinion to with use by dates , so we aren't past it yet , but we might be a bit wonky and get shoved in the bargain section instead! 😆😆😆

Take care and I hope they help you soon, Bee

PS I do use DMannose with Cranberry throughout the winter to reduce how often I get cystitis, kidney infections or UTis and during a flare up.

Not wanting to tempt Fate but I had no infections last year , and only one bout the year before which was shorter when I started using it.

AnniesRyder5 profile image
AnniesRyder5 in reply to Blearyeyed

Thank you Blearyeyed , just received the long awaited phone call prescribing a 3 day course of Abx but I must admit that it concerns me that the right and the left hand are not joined up. There was no point in my mentioning PMR to the nurse practitioner, I was just another name on her list,😅

Blearyeyed profile image
Blearyeyed in reply to AnniesRyder5

That's a relief.I know what you mean , didn't these medical folks learn how to do Dot-To-Dot when they were little like normal children! 😆😆😆😆

Seems Not!

I definitely suggest getting the DMannose with Cranberry as well and lots of fluids to help speed things along.

If they've given you the standard treatment for three days , be prepared , it often doesn't work first time when you have lower immunity on steroids , and you may need a longer treatment or a different antibiotic.

Hope you feel better soon , Bee

AnniesRyder5 profile image
AnniesRyder5 in reply to Blearyeyed

Thanks again x

Hunter134 profile image
Hunter134 in reply to AnniesRyder5

I ve always get antibiotics for a week.Must be strong meds.I think I've been on them all.

AnniesRyder5 profile image
AnniesRyder5 in reply to Hunter134

They’re called nitrofurantoin 100mgx6

Hunter134 profile image
Hunter134 in reply to AnniesRyder5

I've taken them for 7 days and kept on one pill a day for a year.They helped keep my infection at bay but because my dr tried them all iam resistant.They will help you.I did get a bit tired on them but that's a side effect.If it doesn't go in 3 days ask for more.Good luck❤️

AnniesRyder5 profile image
AnniesRyder5 in reply to Hunter134

Thanks again x

sidra1968 profile image
sidra1968

Can you go to an Urgent Care? That is the go to for most ailments needing antibiotics here (US) and one is usually in and out within an hour with the prescription in hand. Do they not have those there? Hope you feel better soon!

AnniesRyder5 profile image
AnniesRyder5 in reply to sidra1968

Thanks Sidra, we do have urgent care but it’s about an hour away. Usually 111 would signpost me there if they thought it would be the best option.

sidra1968 profile image
sidra1968 in reply to AnniesRyder5

ok, thanks..glad to know it's an option for you!

Calliope22 profile image
Calliope22

My GPs ‘reply’ very promptly if I email them?

AnniesRyder5 profile image
AnniesRyder5 in reply to Calliope22

Thanks Calliope - I did try that and got an email in return telling me to join the 8am queue the next day!

I’m on my 2nd day of abx but I feel so weak!

X

TheMoaningViolet profile image
TheMoaningViolet

I am so sorry about your situation, it must be unbearable. I have memories of UTI striking in the night and me waiting for 8 am so I can call my GP, awake and miserable trying to drink water to relieve the symptoms. The usual procedure at my GP's practice is to treat it as an emergency, issue a prescription for wide-spectrum antibiotics the same morning while taking a urine sample. Even if the antibiotics are not the perfect fit, they will offer a considerable relief and a few days later, when the results are back, we would know for sure. Someone mentioned a post-code lottery. I would go to A&E, even if it takes an hour to get there. I hope this gets sorted soon. 🙏

AnniesRyder5 profile image
AnniesRyder5 in reply to TheMoaningViolet

I wished our surgery were as good. They don’t even want a sample- only if the first course doesn’t work.

I’ve no idea if how I feel is connected but I feel totally drained - I even got a sore throat and mouth ulcers now .

TheMoaningViolet profile image
TheMoaningViolet in reply to AnniesRyder5

It sound slike your immunity is compromised. These infections seem to have an opportunity to take hold for some reason. I am not sure what to suggest. When one is in UTI-type discomfort, suggesting self-care seems laughable. 😔

AnniesRyder5 profile image
AnniesRyder5 in reply to TheMoaningViolet

Paracetamol is helping thanks though 🥴

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

And they blame US for creating abx resistance ...

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Very true

Hunter134 profile image
Hunter134 in reply to AnniesRyder5

They should have asked for a sample because now your on antibiotics it may not be identified.Last year my dr had me on five different ones and now iam resistant.In Canada our healthcare isn't good anymore.

Alazarin profile image
Alazarin

Try Citricidal.

AnniesRyder5 profile image
AnniesRyder5 in reply to Alazarin

Thanks for the tip

Gimme profile image
Gimme

Try Cystopurin (or potassium citrate comes in a bottle as a concentrate and is much cheaper). Though pot cit is hard to track down at the chemists these days, and I had to get mine from Amazon. You can get Cystopurin in supermarkets or chemists. It won't get rid of an infection, but it alters the ph of the urine to make it less stingy and irritant. You need to drink plenty to flush a UTI through the system, but it also makes sure your urine is not so concentrated. Drink fluids that are gentle on the bladder. We used to recommend weak slightly milky tea or just plain old water when I worked on these types of products. Cranberry juice is supposed to help in theory, so you could try that. Wear cotton undies or even better go without and wear a skirt. Avoid tight trousers or jeans. A hot water bottle on your abdomen or lower back helps some people with a UTI.

PMRpro profile image
PMRproAmbassador in reply to Gimme

Cranberry juice is just a source of D-mannose - with a taste that is rather an acquired one!!! And a lot of other sugar ...

Gimme profile image
Gimme in reply to PMRpro

I've never found cranberry juice much use, but some people swear by it. But I do rate the potassium citrate. Cystopurin is just potassium citrate in powder form in a sachet.

PMRpro profile image
PMRproAmbassador in reply to Gimme

Have you heard of phenazopyridine? Just recommended by a US pharmacist. Wonder of you can get it in the UK/

webmd.com/drugs/2/drug-1237...

Gimme profile image
Gimme in reply to PMRpro

I was given that in the US, but not sure if it is available here. I've never seen it here in the UK. I just looked on the Boots website and I don't see it listed. I doubt that you would manage to get that ingredient licensed here. I'm always a bit wary of US OTC medicines as most are sold unlicensed. They have a different system to here for OTC medicines.

Gimme profile image
Gimme in reply to Gimme

It's not listed in the PAGB OTC directory either, so pretty sure it is not sold here.

PMRpro profile image
PMRproAmbassador in reply to Gimme

Me too!

PMRpro profile image
PMRproAmbassador in reply to Gimme

AZO (mentioned further down the page) seems to be available online in the UK from VitaminGo - lower dose for OTC.

howtotaperdown profile image
howtotaperdown

Whilst looking after my elderly mother, one of the health assistants recommended a high dose of cranberry (not juice but the high strength pills you can buy in Holland and Barrett ) as a daily supplement and she did not have another incident of UTI which had been plaguing her, I did have to crush them and sneak them into her porridge; I know it won't help you in this present situation but it seems a harmless addition to the supplements and might help in long term to not get repeats

PMRpro profile image
PMRproAmbassador in reply to howtotaperdown

Cranberry supplements are just a source of D-mannose

Sumojo profile image
Sumojo

Hi there , cystitis is the worst thing. Sorry to hear you’re suffering and without antibiotics. It’s unacceptable. I never believed it but after trying cranberry juice, urals, and drinking lots of water I discovered that paracetamol actually does assist with the pain.

AnniesRyder5 profile image
AnniesRyder5 in reply to Sumojo

It sure does but just so my body doesn’t get too complacent I usually have to follow the main course of paracetamol with gaviscon for dessert 😡

flygirl65 profile image
flygirl65

AZO works for pain relief until you can be seen for antibiotics. I get this frequently and I feel your pain. I’m so sorry your having such a hard time being seen! Good luck!

AnniesRyder5 profile image
AnniesRyder5 in reply to flygirl65

Thank you 😊

Hunter134 profile image
Hunter134

So sorry for all you're going through.It seems it's always one thing aft another.I suffer from recurring bladder infections which actually nobody has helped.When it's bad I sit on an ice pack which helps me with pain.I do hope you get this issue resolved soon❤️Hugs

AnniesRyder5 profile image
AnniesRyder5 in reply to Hunter134

Thank you 💕

Lclmlbls profile image
Lclmlbls in reply to Hunter134

I suffered with terrible painful intermittent cystitis from a teenager until I was about 60. A GP prescribed a 6 month course of a low level antibiotic. I hardly dare type this - I’ve never been troubled with it since. I was so grateful to her and wondered why my former GPs hadn’t offered it me in the past. It changed my life.

Gimme profile image
Gimme

I think it is a good idea to see a doctor at some stage (when you can wrestle one to ground) as urinary retention is quite common in women of a certain age, due to lack of oestrogen, and the symptoms can feel similar to cystitis. If that is the cause, they can give you oestrogen pessaries, which are very low dose. If you do have difficulty emptying your bladder fully, my doctor told me to stand up when I have finished and then sit down again and that can help to empty the bladder.

PMRpro profile image
PMRproAmbassador in reply to Gimme

Called double voiding

medicalnewstoday.com/articl...

musicality profile image
musicality

My experience has been recurring urine infections. I usually recognise the symptoms before full-blown Cystitis, and take my Pharma and surgery nurse's advice. Try 2 drink more water so that pee is straw coloured ( obviously temporary changes with beetroot/red wine, etc. ) It usually starts with me feeling washed out and itchy thrush. Try taking Cystitis powders in water according 2 their instructions. They come in different flavours, i.e. blackcurrant. After a couple of days symptoms can ease and you may not need antibees if caught early enough. Still advisable to get a pee test done though. When mine has advanced I am usually prescribed an antibiotic which usually works quite fast .

Hirwaen profile image
Hirwaen

Most has been covered but firstly as far as I am aware(retired nurse) 3 days of nitrofuradantin is not long enough. Also, if you suddenly developcystitis and can’t get to a chemist, bicarbonate of soda with plenty of water regularly with Paracetamol will help the stinging till you can get to the surgery.🤞🤞🤞🤞

AnniesRyder5 profile image
AnniesRyder5 in reply to Hirwaen

Thank you , I will let you know tomorrow when I will have finished the course. X

AnniesRyder5 profile image
AnniesRyder5 in reply to Hirwaen

Hi Hirwaen

Cystitis back with a vengeance! Being Saturday I can’t get to a gp

Any ideas how to get another script?

X

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

Call 111 and give them the details of that totally inadequate prescription. GPs do annoy me - they are terrified of using abx because of developing resistance but giving inadequate abx is EXACTLY the way to create resistance.

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thanks again

I’ve just finished 111 call.

I have an appointment at 9-30 at the urgent care centre

It’s just so frustrating isn’t it!

And knackering😡

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

Especially the knackering!!! If they did it right the first time, they would save people having to keep pestering them and needing more appointments.

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

This time the doctor prescribed Trimethoprim And actually took a urine sample off me!

He said there was no sign of sugar but said it indicated inflammation and I don’t know how he could do that!

Could all this be linked to PMR?

X

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

The infections MIGHT be related to the pred stopping you fighting them off. PMR can lead to irritable bladder with similar symptoms of frequency and pain but no reason why it should cause actual infections.

The urine dip shows white cells amongst other things - sign of inflammation/infection and some doctors seem to use the terms interchangeably for some reason - or maybe it is just for the uninitiated/patient ...

MDT1 profile image
MDT1

when you do get them I would say ask for a 2nd prescription for later!! I get uti's frequently since starting preds and on one occasion ended up in hospital overnight, delirious for lack of antibiotics... deffo scared everyone so now I have a prescription 'in case'. Worth asking! x

AnniesRyder5 profile image
AnniesRyder5 in reply to MDT1

Thanks but given I had a problem getting 1 script, I can’t imagine the furore if I asked for a second!😡

ChrisinNam profile image
ChrisinNam

Water, water, then more water and repeat. Then continue to repeat, and again, and again. And continue tomorrow and tomorrow .......

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