Methotrexate/CIMZIA recurrent urine 'infections' any help ?

TwinMum10

Hi !

I'm new to this forum so sorry if this has been posted in the wrong area.

I'm at my wits end which is why I have been up surfing for info since 5.30 am and thought a post on this site might be useful.

I have had RA for 9 years. I've been through various treatments which had varying degrees of success however it was uncontrolled for a while as I was trying to get pregnant. After the birth of my children it came back really badly and I started on Methotrexate in Nov 2010. I was in this for about 6 months with no clinical change to my condition. In July 2011 Cimzia (one of the biologic drugs) was added and since then my condition has improved greatly and I am very happy with my RA. My hands are still a bit sore but this is down to damage now rather than the disease.

So that all sounds good.

However, in the last few months I have had horrible urine infections. The first one was so bad it ended up moving up in to my kidney and requiring several doses of antibiotics before finally clearing.

I've had at least 2 or 3 more since then.

However, more recently I've had 3 visits to the GPs with the same symptoms but no infection is detected. Last week I was back and GP gave me antibs and sent the sample away. I felt better assumed it was the antibs until yesterday when I had a massive flare up again. I spoke to GP who said I'm not showing infection so the can't prescribe me anything at mo. Took another sample, same thing although detecting a small drop of blood.

So my symptoms are needing to go to the loo often and when I've been feeling like I need to go again instantly. If I resist for a bit it does die down but I am left with a sort of crampy lower ache. Yesterday it was so bad I spent most of the morning in the loo - not easy with two toddlers !!

One of the GPs I've spoken to a while back said that ladies on Methotrexate sometimes feel like they have cystitis.

What I was wondering is if anyone else has been feeling like this ? And what course of action you took ?

Long term I can't keep feeling like this. I'm off on hols on Sat for a few days and am concerned about it. I also have this fear if left unchecked it will flare up in to my kidney again, which is why I am always quick to see a GP.

I've read a few things on-line which seem to suggest that there is a condition which is non bacterial cystitis perhaps caused by Methotrexate which fits my symptoms but I'm not expert. Not seeing my Rheumatologist until November but I can maybe get an earlier slot of needs be.

Thanks in advance for any help you may have to share.

Twin
xx

Tubby

Hi there

I am afraid I can't help as, although on methotrexate, I haven't had your problems. I just wanted to be here for you as I know how frustrating it is for a Dr to almost shrug their shoulders and say "you're on your own" with this. Look forward to hearing anyone else's experience as it sounds as though it could occur to anyone of us women.

Hope you feel a bit better for your hols

Tubby

friarygirl

hi, as well as having several other conditions I have a bladder condition and so am aware it is easy to consider we have one condition and one lot of meds and therefore everything is linked to it. I dont say this to be negative or worrying its sadly how it is!
I would suggest they should not be messing around saying there is nothing else or nothing to treat it - ask for a urology opinion in the mean time the GP could arrange an ultrasound and some other tests to see if your bladder is emptying properly - leaving urine in the bladder after it is emptied [ or so you think!] can cause this sort of problem. then you drink less [ please dont and drink plenty of water and non caffinated drinks] and the problem grows. Also there is a condition where the bladder becomes inflammed and so a urolgist might [ dont panic now please] want to look inside the bladder and see what is happening in there.
All this is ***Might be*** and so I am sharing it because it is too easy to say it is due to this drug or not this drug and there are huge teams of dedicated specialist nurses and then dr's if req who can assist with the investigations to hopefully help you feel better.
Dont take antibiotics for this unless they are really needed and keep a record of what makes it better and what makes it worse - this could be foods, drinks such as acidic things etc and how often the symptoms are happening - every day all day or at random times etc.
It sounds very personal but other things such as hormonal issues such as the normal changes which happen in the body and hormonal drugs even the pill can alter things too and also an often neglected one is bowel function and any changes to this can also affect the bladder.
things such as perfumed soaps, bubble baths etc can be a total disaster and also things like synthetic materials, pads and panty liners, wipes sprays , talc etc too.
Doubt it is any or all of the above but it is worth mentioning them all for you and others in the future.
the bowel and bladlder foundation can also provide excellent advice and info on any or all of the above and might be able to discuss the issues and concerns of the methotrexate too, your pharmacist might also be a great source of info here as well. Hope you feel better soon and dont need any further care , investigation or exp any more pain. FG

kathe

So sorry to hear that you are struggling whit these side effects.
I`m on methrotrexate and cimzia.Youst started on cimzia..
Hope it gets better four you, and happy to heat that the cimzia is helping you...:)
Best wisches...

julie47

Hi Twin and welcome to the forum

I am sorry I can not help with your problem, I just wanted to say I hope you get to see a specialist and that you feel better soon.

Love juliepf x

dreamdaisy

There are some on here who do get recurrent UTIs but I don't know why this happens. (I am fortunate in that I don't.) I know there are different forms of cystitis and that not all resond to anti-bios but I think there has to be a link between the meth and cimzia as both suppress the immune system. Whenever I have a bug that requires anti-bios I stop the meth and humira until I am bug-free, do you? I think you need a chat with your rheumatology department - mine has a help-line I can ring for advice, does yours? I wish you well. DD

elnafinn

Hi Twin

Friarygirl has given you some good pointers in her reply. On looking up the two drugs metho and cimzia you mention I read both can cause problems similar to what you are suffering with. Friarygirl has mentioned similar tests that googling talked about too. Good point as well, do keep drinking water although I well appreciate this is a vicious circle when suffering with this infection because of the awful discomfort.

I do hope you get the correct tests done soon.

Elna x

TwinMum10

Thank you so much for all your responses. It was very kind.

I ended up going to the GP this morning and have just returned.

Thankfully I got my favourite GP today has been very supportive over the years and knows all our family history (unusual in city living I can tell you!).

So he checked me out for kidney stones etc and did another sample. Still no infection but he did say that the dip stick isn't always accurate and that my discomfort probably means there is something there.

He checked my results and I have had around 7 or 8 this years. Most cultures have grown (ie tested positive) which he feels is enough to look in to further. He has no reason to believe this time is any different. So he has given me 3 days worth of antibs and will speak to me next week when he has more results.

How refreshing to have a Dr who does something when you are in discomfort. I feel so much better just knowing that.

Yes, I don't take the metho or cimzia whilst on them but I've already had them this week so should be ok. Dr also mentioned there is a preventative treatment for people with recurring problems but he'll need to check with my rheumatologist first to check it is ok.

So feeling better. Thankfully with the right GP and my consultant things seem to work out. So glad I ignored the lady GP yesterday who basically said there was nothing wrong with me !

I guess it is just one of these things. I have twin boys (nearly 2) and although I am not working at the moment my life is fairly hectic. In fact funnily enough if I was working I would be getting signed off this week however as such I have to get on with things. Luckily husband is off today (eats up his hols though) and is taking the wee ones out for a while.

Once again thanks for all your responses. It seems to be a very supportive place. Some of our conditions can be very isolating. I can honestly say I know no one in my circle of friends who ails like me and it is so nice to have folk here how understand.

Cheers!

Twin

kathe

So great to found this post. I`ll olso take cimzia and metex and got an urin infections on monday, the doctor gave me 6 days of antibiotic..So really hopes it help...
Hope your infection have clared.:) Best wisches.

Soretoe2

Hi twin,
I also have recurrant UTI's, for many years around 4/6 a year.
I was reffered to our Renal Unit about 25 years ago and was given Bactrim (I think that's how it was spelt) for 2 years constantly to try and overcome the problem. I didn't have a single infection while taking it. The minute I stopped - back they came.
Since then I have had a few more long term goes at different anti-biotics, as soon as I stop them, back come the UTI's.
So now I take daily cranberry capsules and pay a lot of attention to my personal hygene. I use disposable wipes all the time, when I have an infection with a shake of tea tree oil on.
I also drink at least 6 glasses of water a day and avoid citrus and fizzy drinks. I am also just getting over an infection, I was given Cefalexin this time and so far it seems to be working but am suffering with tummy aches and bloating.
Since taking the cranberry capsules this is my first infection this year. last year I'd had 4 by August. My doc reckons it's the capsules, as cranberry helps stop the germs sticking to the sides of your bladder.
I've also been told it's because my immune system is very under par. I can't comment on the Methotrexate as I don't take it but I understand having the rheumatoid factor does lower our resistance to all sorts of things.
So best of luck, perhaps you should request that earlier slot with your rheumatologist to put your mind at rest. Best wishes, Joy

kathe

Thank you..Great tips to get...
Don`t understod the last part whit the reuma??
I haven`t have an infection in 5-8 years so I have been lucky ,But hope this infection clare soon..
Have 3 days of antibiotic left..