UTI with RA I know it's boring!: Im suffering from... - NRAS

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UTI with RA I know it's boring!

Jaxine profile image
32 Replies

Im suffering from Continuas UTI infections whilst on Humari. I'm on my 3rd Biologic now. It seems that RA meds, whilst helps my RA, always causes me horrid urinary infections. Does anyone else experience this debilitating problem? We have to take immune suppressant drugs so what's the answer or the remedy? Also have huge problems with my sinanus! I can cope with head ache, nausea but UTI s unbearable! Any help greatly recieved. I take loads of fluids, cranberry juice all the usual advice. Its perpetuating circle! RA comes back when off the meds but need to take the antibiotics, the UTI clears up back on the meds UTI comes back.

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Jaxine profile image
Jaxine
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32 Replies
helixhelix profile image
helixhelix

If you follow all the standard advice, then perhaps next step is to ask to be referred to a urologist?

Jaxine profile image
Jaxine in reply to helixhelix

I suffered from UTI s from the age of 7 up until 34. I saw a Urologist and had an operation and haven't suffered from a UTI since. So I'm sure it s due to the meds suppressing the immune system leaving me particularly vulnerable in that area. I'm obviously predisposed to them, so i just need to work it out.

wowzerbowzer profile image
wowzerbowzer

Try D-Mannose. It really helps. You can find it on Amazon. There are no side effects. Make sure to follow the directions-taking with a little bit of water and then waiting...and then drinking a lot of water to flush out the bacteria from your bladder. D-Mannose basically keeps the bacteria from sitting in your bladder/collecting on the bladder walls. Many people take it as a prophylactic. Best to you

Jaxine profile image
Jaxine in reply to wowzerbowzer

Excellant thanks for advice.

emmajj1971 profile image
emmajj1971

Humira is anti tnf I was unable to tolerate it along with embrel. I'm now on rituximab and much better, it was my 5th biologic so I was getting fed up at the time. Hold in there you will find one you can tolerate I'm sure xx

Jaxine profile image
Jaxine in reply to emmajj1971

Wow! Exackly the two I've been on, after one year of trying Dmards and 3 Biologics and still to no avail, getting so despondent! You've made me feel better already. Sorry what is an anti tnf?

emmajj1971 profile image
emmajj1971 in reply to Jaxine

Tnf is a short name for the type of drug humira is and the tnf is meant to stops the inflammation but tnf dont work for some but seem to be the main ones to use. I dont know but I'm wondering if maybe they either use the cheapest to start or the oldest x

helixhelix profile image
helixhelix in reply to emmajj1971

The anti-tnf type of biologic were the first to be developed and suit many people, they also have a shorter half life so are out of your body more quickly if there is a problem. There are about 6 different types of biologic, and several different ones in each group, so don’t despair! There will be one for you.

Jaxine profile image
Jaxine in reply to helixhelix

It must be almost impossible to gauge which biologic will work for each individual however, having tried and tested so many during the course of this year surely my signs and symptoms/side effects should indicate which could possibly be more effective! But it feels like I'm not being given considerable thought I'm just being thrown down the path of the consultants tick list. Just cant wait to eventually feel a bit normal again and get my life back to some extent

Fra22-57 profile image
Fra22-57

I am on my 2nd UTI and have chest infection too.I was so shocked when went to doctors as went for bad stomach feeling fluey .I feel so ill with it and on sofa taking antibiotics. Cant take cranberry juice as on warfarin so can only advise to drink lots other fluids but preventative I cant tell you.I was only saying other day that I have not picked up lots of illnesses being on biologic but spoke so soon.hope you find some relief

Hodc profile image
Hodc in reply to Fra22-57

I constantly get uti's and chest infections. Been told these are the two most common problems we get, because of our drugs. Don't know what would help, as I ve not found it!

Jaxine profile image
Jaxine in reply to Fra22-57

Thanks gir your reply, UTI s are just revolting!

Jaxine profile image
Jaxine in reply to Fra22-57

Which biologic are you on?

Fra22-57 profile image
Fra22-57 in reply to Jaxine

Abatacept.4th one but working.got to stop for few weeks while got these infections

Tillie20 profile image
Tillie20

Hi Jaxine I have the same problem since starting humaria about 12 weeks ago I have had 3 uti's and it feels as if it never clears properly, also about the antibiotics so confusing don't take Humira when on antibiotics the told ok to take them I cannot wait to see my consultant on 24th to really understand what to do as the last Rheumy nurse I saw (not my normal nurse) I could not understand and she did not even know I was on this medication but apart from that it is fantastic NO pain aches yes but NO pain X

Jaxine profile image
Jaxine in reply to Tillie20

Think I'm going to ask to change to another biologic. Problem is it takes months to get an appointment to see Rheumy C and just as long to go through the R nurses. They tell you to stop the biologic and take pred until they sort out another biologic, it's just a vicious nasty circle. Why cant we take antibiotics on Humira?

I used to get repeated UTIs long before having RA. I've been on MTX and other RA drugs most of this year. Have been free of UTIs for over 3 years now thanks to D-mannose. Look on this website sweet-cures.com for lots of information about how to make the best use of it. It's not simply a matter of taking the tablets. I wish you success. I know how horrible UTIs can be,

Jaxine profile image
Jaxine in reply to

Def going to look into D-Mannose. Thanks

Troygirl profile image
Troygirl

I was on Humira and had to stop because fungus was growing & living in my Sinuses.

Had to have actual sinus surgery - FESS, (under general anesthesia and the whole hospital experience).

They had to go in a scrap it out. Disgusting!

Also, when I was on the Humira my legs always hurt. They felt like the muscles were turning to wood or something like that. Hard to describe. Wood would be the best description.

I never had UTI issues in life before RA and never had one while on biologicals either.

Thank God!

The fungus thing was bad enough!

Jaxine profile image
Jaxine in reply to Troygirl

Seeing my doctor tomorrow to get this sorted out. Thanks

SEAgran3 profile image
SEAgran3

Had the same problem. Brilliant GP prescribed Ovestin. I insert once a week. Been doing it for over 12 months. Went through the menopause early at 42. Now 72. Hope this helps

Jaxine profile image
Jaxine in reply to SEAgran3

Excellant going to ask my doctor for that too. Great stuff!

Nanna71 profile image
Nanna71

Nothing boring about having UTI's unless you aren't having them. I wish i knew something to be helpful however I keep the infections at bay with cranberry juice plus lots of water drinking. I also give cranberry juice to my tiny dog who got a UTI last summer. So far so good for both of us. Years for me, months for her. I also pray for my health which is no small part of my equation.

Jaxine profile image
Jaxine in reply to Nanna71

Thank you, going to buy some tomorrow

Leics profile image
Leics

Hi the only thing I find that keeps UTIs at bay especially when taking antibiotics is live yogurt, one a day or yakult or a probiotic your choice it’s a good idea to take one everyday though and you may well find after a week with fingers crossed things will improve. However if you have a current uti then antibiotics are about the only thing that will help but eat a yogurt everyday. It works for me no UTIs for years and mum in law who seemed to get them every other week hasn’t had one either. Can’t hurt 🤞

Jaxine profile image
Jaxine in reply to Leics

I'll give it a go, thanks for responding

Zatty profile image
Zatty

Hi Jaxine, like others replying, I have had various chest infections and several UTI infections both whilst on biologic/methotrexate and before getting PsA (the utis). When I was younger I had a bout of recurring cystitis and my doctor, after trying several rounds of antibiotics, eventually recommended two weeks of a very high vitamin C dosage followed by two weeks of potassium citrate, repeated a few times (I can’t remember how many rounds to be fair). This supposedly makes your pee acidic and then alkaline and the change disrupts the environment for the bacteria and hopefully they die! It worked for me and I’m really glad you’ve asked this question as it has reminded me of that solution… I’m not sure if it’s ok to do that on the kind of arthritis meds we are all on but worth a shot if no risk?! Good luck – having constant UTIs can be very wearing, and that is even before you take into account the effects of arthritis… xx

Jaxine profile image
Jaxine

Interesting vit C great advice thank you

LippyLu profile image
LippyLu

Agree that you should see a good urologist. Sounds like your infection went below superficial layer of the bladder and may also be in the neck which is less accessible to antibiotics. That would mean you need a stronger drug (e.g., Keflex) for a longer time frame (e.g., 8 weeks).

Jaxine profile image
Jaxine in reply to LippyLu

Thanks for your advice

LippyLu profile image
LippyLu

P.S. sugar feeds infection, so cranberry juice and yogurt with sugar are not helpful

Jaxine profile image
Jaxine in reply to LippyLu

I rarely ear sugar based foods, but thank you

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