Urinary Tract infections : Hello I am having problems... - NRAS

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Urinary Tract infections

Gillyd62 profile image
47 Replies

Hello I am having problems with a stubborn UTI and I’m feeling quite down. . I am currently taking weekly 20mg Mtx and daily Hydroxychloroquine. I am on my second course of antibiotic Nitrofurantoin. I think it was quite a bad infection to begin with and I have improved but it’s not properly clearing even with this second course. What are other peoples experiences of UTIs and Mtx and Hydroxy.

i have been advised to stop the Mtx and I can feel the RA creeping back. Thank you for your help.

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Gillyd62 profile image
Gillyd62
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47 Replies
MadBunny profile image
MadBunny

I'm sorry I can't give you any practical advice but would like to say I hope you get some help and relief soon.Thinking of you and sending you warm hugs 🤗🐰

Gillyd62 profile image
Gillyd62 in reply toMadBunny

Thank you

medway-lady profile image
medway-lady

Ask about Hiprex it’s an antiseptic prescribed by my Urologist it does seem to work. I don’t know if GPs can prescribe it but I also like Cephalexin although hospital used an injected one Gentamyacin which hurt in thigh, that really helped. I drink about 4 pints of water every day plus tea and coffee as it can flush out bugs. I don’t take MTX but is it linked with infections?

Gillyd62 profile image
Gillyd62

I will have to ask the GP about different antibiotics as I’ve just been given the same one and it doesn’t seem to be doing the trick !!!

medway-lady profile image
medway-lady in reply toGillyd62

The GP can send a sample to hospital path lab who then advise which medication to prescribe. But in my case 9 lots didn’t work so I saw a Urologist. He did a cystoscope and ct scan nothing sinister and as I have CKD they are super careful. In my case I decided to go for the antiseptic rather than get more antibiotics as I could get less and less benefit from any antibiotics. You could try d mannose as well. I’d just ask GP to be referred to a Urologist if the problem goes on for a long time or repeats frequently especially if you have blood in a specimen. It doesn’t hurt to just ask, does it?

Gillyd62 profile image
Gillyd62 in reply tomedway-lady

Urine sample has been sent to lab and apparently I’m on the right antibiotic. Maybe it will just take some time. Didn’t realise a UTI was so miserable!!!

medway-lady profile image
medway-lady in reply toGillyd62

Were you given 5 days as I used to get 14 but even then didn't really do much. It’s not nice but try to drink as much water as you can. I drink it slightly warm as easier to down. But of course I have CKD so it’s good practice anyway. Just need to be aware of where loos are when going shopping. lol Bluewater has lots. lol

Gillyd62 profile image
Gillyd62 in reply tomedway-lady

Was given 7 days initially and although I was a lot better I knew I was still uncomfortable and then started another 7 days straight away. Not sure they are doing much now !! But may have to just wait and see.

wishbone profile image
wishbone

I've had a bladder condition for 10 years which makes me prone to UTIs. I've had a lot of trouble with stubborn UTIs, including while taking Mtx and Hydroxy. Following the last appointment with my urologist, both me and my GP were sent a letter not only saying if I have any UTI symptoms then a sample must be sent to the lab to be cultured, but it should also be followed with a 3 month course of Hiprex, which will be a first for me as I've never been prescibed Hiprex throughout my 10 years of problems most of it under a different urologist. I'm now on a low dose of Baricitinib and UTIs have significantly reduced since starting the med 3+ years ago, though for some reason have returned over the past 6 or more months. Thankfully, unlike previous stubborn UTIs, they have cleared with just a one week course of the appropriate antibiotic.

Gillyd62 profile image
Gillyd62 in reply towishbone

Yes that’s interesting. Must be the RA meds playing a part. In all my 61 years I’ve never had a UTI before.

wishbone profile image
wishbone in reply toGillyd62

Because the Mtx and Hydroxy weren't working very well my consultant tried me on a biologic called Enbrel. While it worked wonders for my RA I was only taking it for few months before having a nasty infection ,aka...septic arthritis, in my hip. The orthopaedic surgeon at the time was convinced that Enbrel was the main culprit by allowing a bug from a recent UTI easier access to my blood stream. He told me not to take Enbrel again but did not mention Mtx which I was still taking at the time.

While RA meds obviously play a part there are other things involved with recurring UTIs. My urologist told me bladder stones can also play a part and I did indeed have a single stone present much of the time while having problems with recurring stubborn UTIs, Once the stone was removed the UTIs did decrease as I recall. Trouble there is I was trying different meds back then so am not sure what helped and what didn't. I also started taking Manuka honey around the same time which may also have helped.

If your infection fails to clear then I would like to think your GP will send a sample to the lab, but if he doesn't then you should ask him.

edit....there are two types of antibiotic you should avoid when taking Mtx....Trimethorprim is one but I can't remember the other.

medway-lady profile image
medway-lady in reply towishbone

I’ve been taking Hiprex for past year, it is supposed to stop the bacteria increasing and prevent the overuse of antibiotics as you can’t become immune to it. Tastes vile and I’m not sure GPs can prescibe without a Urologist instruction. In my case I never had any UTI’s until I started biologics.

Are you taking any anti inflammatory? Your bladder is likely inflamed from the infection which is miserable enough. Drinking lots helps but getting to the toilet with RA is hard enough.

Gillyd62 profile image
Gillyd62 in reply towilbertjellyfish

No I’m not. Never sure about taking anti inflammatories alongside all the other meds.

wilbertjellyfish profile image
wilbertjellyfish in reply toGillyd62

Obviously ask the doctor or pharmacist but I take eterocoxib for my ra when I need it. Ive taken naproxen in the past. However aspirin or ibruphen will likely help the bladder too. I take a load of paracetamol or Co codamol if my ra is playing up too.

Mall profile image
Mall in reply towilbertjellyfish

Check with GP, I take anti inflamatories, alongside maximum dose of methotrexate and biologic but I have been told not to use ibruphen. There are certain drugs you cannot take when taking methotrexate so always make sure a Dr checks this out.

SEAgran3 profile image
SEAgran3

I am prone to them too, in fact I have the antibiotics in all the time. My surgery is very helpful

Ryka profile image
Ryka

Very recognisable. UTI has become more common since i started RA meds. when I have an active infection I drink lots of Camomile tea throughout the day. And because the antibiotics are so hard on the stomach: i also take antacids like omeprazole to protect the stomach and prevent acid reflux.

And I have started drinking a large cup (atleast 350ml) of Camomile tea everynight as regular maintence and I feel like I have fewer UTIs.

Gillyd62 profile image
Gillyd62 in reply toRyka

I will try the camomile tea.

BoneyC profile image
BoneyC

I take MTX (over 40 years) and HCQ (14 years) but this combination has never caused UTI's. Hope you find a solution.

Gillyd62 profile image
Gillyd62 in reply toBoneyC

Thank you

UKBIRD profile image
UKBIRD

Hello.Since March this year i have had 5 uti's and needed antibiotics each time, i am on 20mg Mtx weekly & 400mg hydroxy daily. Each time having to come off meds due to taking antibiotics, i have been waiting since March to see urologist at the hospital, only last week i had a telephone consultation with him. He explained the lining of the bladder can become thin, this can be caused by age & a contribution of meds being taken.( I am 63) he told me when the lining is thin, bugs & germs tend to stick to the lining & do not get flushed out, i drink 2 litres of water daily plus teas, coffees & cranberry. He has prescibed me a pessary to use, 1 a night for 2 weeks, then 2 a week for 3 months. He also told me to take something called D-Mannose, you can read about this on the NHS website, reccommended for uti problems. You can buy it direct from heath shops/Amazon. It was an interesting read & i am currently trying it..im only a week in with these things, so to early to say if it makes a difference...its been a long hard road managing RA with continuous need for antibiotics...i hope this helps, i know that no 2 cases are the same but it may give you some comfort to know you are not alone. I will keep you posted with my progress & thoughts in a few weeks time. X

Gillyd62 profile image
Gillyd62 in reply toUKBIRD

That’s really interesting. I guessed other people would be going through this too!!! Please keep me posted with your progress on d mannose. I will look into it. Thank you

Bethany02 profile image
Bethany02

drwillcole.com/functional-m... believer in giving anything a go

Gnarli profile image
Gnarli

UTIs can make you depressed. I'm just starting my 5th episode since July and am on the verge of tears most of the time. It also affects my appetite. Either not interested at all or eating junk food obsessively. You have my utmost sympathy as I know what it's like so sending healing thoughts and gentle hugs

WilfDog profile image
WilfDog

Hi Gillyd62

I used to have UTI's on a weekly basis some years back. I became resistant to the antibiotics for some time and in the end decided to look at prevention and alternatives.

I used a combination of Waterfall d Manose and Doterra's pure therapeutic grade essential oils of On Guard, Oregano, and Lemongrass as well as Tea Tree. They are suitable for internal use, due to their purity. Waterfall d manose is easy to get from a health food shop or online. I take one before bed. I signed up to Doterra for the essential oils and ordered them online. I make up a capsule with clear veggie caps using 2 drops of each oil two to three times a day for a week. Oregano can only be used for 7-10 days consistently and then a break of seven days is required.

This combination eventually gave me relief from the incessant UTI's, which became very debilitating. I couldn't live without either of these now, and also started Doterra Life Long Vitality a few years back. It has been extremely good for my inflammation. I'm still on Enbrel and Steroids, but there was a significant difference after taking them.

I really hope you manage to sort out your UTI's.

Gillyd62 profile image
Gillyd62 in reply toWilfDog

Thank you lots of useful stuff to try which seem to have done the trick for you .

WilfDog profile image
WilfDog in reply toGillyd62

I still get UTI's occasionally, but not half as frequent as they used to be some years ago, and the antibiotics work again now if needed. Definitely a huge improvement for me. Good luck

marie66 profile image
marie66

Hi Gilly, I was plagued by EColi UTI and was on continual antibiotics ended up with kidney infection and was off methotrexate for almost a year so RA went rampant! I eventually asked GP to contact Urology as I was going back on my RA meds! They told him I needed switched from antibiotics to a urinary antiseptic called HIPREX so I could resume methotrexate. 18 months later I’m still on Hiprex but I’ve had no more UTI’s. I hope this helps. M x

Gillyd62 profile image
Gillyd62 in reply tomarie66

Other people have mentioned Hiprex. I will probably need referral to urology if UTI continues.

marie66 profile image
marie66 in reply toGillyd62

Gilly, my GP just contacted Urology and explained my RA was flaring and I needed the Methotrexate and they told him to switch to Hiprex straight away. It was a further 9 months before I saw any Urology clinic appointment! M x

medway-lady profile image
medway-lady in reply tomarie66

Same here Hiprex has been good and apart from taste it works.

wishbone profile image
wishbone in reply tomarie66

Most if my UTIs have been E. coli type. Apparently it's resistant against some antibiotics and can be a stubborn bug-ger to clear.

medway-lady profile image
medway-lady in reply towishbone

Mine is ecoli too I’ve had all sorts of tests because of the AKI and I actually only get bloody urine not pain or fever. Apparently now common. I was told if they tested 10 woman at least a couple will have a uti and no symptoms. I am really not worried now as the antibiotics did nothing but damp the bug down to reoccur in about a month. I actually told GP no more and he referred me to Urologist. Saw him and he prescribed Hiprex as he agreed all the antibiotics was not good. Trouble is GPs only look at that instant condition not the total overall. Keeping a diary is a good idea I could say when I took 8 lots of antibiotics meds and also photo’s of blood. That made the Urologist happy he said the more info the better and GPs should listen as clearly patients do actually realise that 9 lots of antibiotics in 11 months meant that the medication didn’t work. I was offered antibiotics for 3 months but choose Hiprex as evedience is mounting he said that a big problem is acidityin the bladder. It does seem to work. lol

wishbone profile image
wishbone in reply tomedway-lady

I had awful problems for years with recurring UTIs. In fact for a lot of the time I think it was one infection which never really cleared and returned within a few days of finishing a course of antibiotics. At one time my GP really cheesed me off by repeatedly prescribing nitrifurontine even though the infection repeatedly recurred within a couple of days. I did protest at the time though probably not as strongly as I should have, and would do today. Can't say I had much faith in my urologist at the time either and am thankful the one I now have seems more thourough even with the pressures created by covid. My old urologist once refered me for an ultra sound scan to check for bladder stones. It was several months later that during a routine appointment I inadvertantly found out that the scan had detected 5 stones. Now you could say I should have phoned for the results, but I wasn't aware of that at the time and thought if there was a problem then I would recieve a phonecall or letter to let me know, just like my current urologist did with the results of a CT scan I had a few months ago, which thankfully showed no sign of bladder stones.

medway-lady profile image
medway-lady in reply towishbone

I know the NHS is hard pressed but I’ve just returned from GPs to correct my medical records. Last week when I saw GP the lovely dr said I had not returned for the second Shingrex jab, I said yes I did. Anyway beginning to doubt myself I popped in when nearby and receptionist check I did attend and had both. It appears the computer system is not calibrated to record the 2nd jab as the other live in is just one jab. I got home to get a phone call profuse apology and it appears the new computer system is not as clever as the GPs thought. Record corrected and now looking at others as we are all being listed as one jabs. Really it’s up to patients to audit GP records now. I’m aware that they are busy but in my case it was just Shingrex vaccine, how much other stuff is not recorded properly?xx

Fra22-57 profile image
Fra22-57

Morning Gilly. I know that if given antibiotics you have to give your body a fighting chance and alot of RA drugs already lower your immune system.my sister doesn't have RA like me but she used to have debilitating near constant UTI 's .she was given strong antibiotics and was always given them in reserve to keep on stand by for the next one as appointments are hard to get first day of symptoms .Things got so bad she was given infusions monthly. That sorted it and it's rare she gets one now and if she does it is not so bad

Jackadoodle profile image
Jackadoodle

interesting to see the posts that recommend coming off MTX when on antibiotics

medway-lady profile image
medway-lady in reply toJackadoodle

That is standard advice for all the RA meds I was told years ago. But these things do change it seems.

Sunset54 profile image
Sunset54

I am on Methotrexate and Enbrel. I have had lots of problems with UTI’s. It made me really poorly too. Finally my rheumy consultantant said I needed a prophylactic dose of Nitrofurantoin to keep UTI’s at bay. I continue with rheumy meds and it is working really well to keep infections away

Gillyd62 profile image
Gillyd62 in reply toSunset54

Glad that is working for you

281Genie profile image
281Genie in reply toGillyd62

I always drink lots of cranberry juice and take cranberry tablet's from the chemist on a daily basis (£5.99) for a month's supply.

Hello, sorry to hear you are having problems I can relate to stubborn uti's. Did your Gp get a sample of your urine checked with the hospital to see if you are being treated with the right antibiotic? If not I would speak to them if the meds are not working for you. Keep drinking lots of water to flush it out and take pain killers if you need them, plus I always use a hot water bottle. Hope you feel better soon Lisa

Durrell profile image
Durrell

I had a really bad run of uti,s, on and off antibiotics like sweeties at the time. I’ve now take D.Mannose regular & drink a lot of water. Obviously check with your Rheumy, FYI I’m on a biologic & Mtx & I’m told it’s ok but run it past your Rheumy team first. Maybe helpful 🌸

Marycullen profile image
Marycullen

I have had them since I have IbS. It is when our poop gets into the urinary track. Watch how you wipe yourself. Also straight oregano. Unsweetened cranberry juice works great. In the US I go to Whole.Foods for the bottle and drink about 2 ozs three times a day. I used to have a lot and never took antibiotics for it.

medway-lady profile image
medway-lady in reply toMarycullen

I was told it was sitting in human soup or otherwise known as a hot tub on a cruise ship. I got UTI’s and a dreadful lung infection. Never again would I use one.

Marycullen profile image
Marycullen in reply tomedway-lady

I wouldn’t be surprised about the hot tub. I am so sorry

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