Constant UTI's

[Janeellen]

Does anyone else suffer from constant UTI's?. I'm sero+ RA (diagnosed 5 years ago), also I have osteopenia, sleep apnea, hypothyroidism and fibromyalgia. I take various meds including MTX 25mg via injection, I also have Rituximab infusions every 6 months. For the past 4 years I've suffered from repeated UTI's. All urological investigations have been normal, apart from bladder scarring caused by the UTI"s. I take a low dose of Nitrofurantoin daily to try and prevent infections.

My current infection has lasted now for around a month. I've been treated with a 10 day course of trimethoprin, a 7 day course of nitrofurantoin, and a 10 day course of cephalexin. Each time 2 days after finishing the course of medication my UTI is back with a vengeance.

Is anyone else having this kind of problem???

[Janeellen]

Thank you. I actually took cranbe for 2 years. I didn't notice any change on the amount of infections I had. When I spoke to my consultant about this his said cranbe is good for frequent cystitis but NOT for bacterial infections, which is what I suffer from.

[Shelley1701]

My mum was having frequent bacterial urinary infections. She's been drinking fennel and nettle teas and that seems to be working. Cranberry did no good whatsoever. Her doctor said it's only good for cystitis. Just make sure the teas not interact with anything else you are taking. I read somewhere that fennel stops the contraception pill from working.

[Gigi71]

I found a book by Angela Kilmartin to be very helpful, her life and career were blighted by UTI's I had a problem last year for 4 months and was desperate for relief from pain and constant discomfort. Antibiotic's didn't work. I also found boiling pearl barley and straining through a sieve, adding lemon juice and drinking 3 times a day, very soothing. I do hope you find an answer as this condition is so miserable. Good luck

[Gigi71 in reply to Gigi71]

I should add, she recommends a certain way of washing after a bowel movement to avoid germs transferring to the urethra. Good luck.

[Scorer]

Dear Janeellen,

I too have sero+ RA, have had it for 40 years. Been on metho and prednisolone for 30 years and started on Rituximab in 2008. Over the past few years I also have had numerous UTIs, chest infections, shingles X 3 in the past 18 months and have just got over a really bad episode of campylobacter ( a form of gastroenteritis ). Started to do research of my own on immunosuppression and came to the conclusion that I had a problem. So, booked a private appointment with my rheumatologist to discuss this.

This was 3 weeks ago. He was very sympathetic and supplied me with antibiotics and antivirals to treat UTIs and shingles when they recur. Then received a letter from him. On reviewing my blood results, done in March when I had my last Rituximab, he now says I have hypogammaglobulaemia and require immunoglobulin infusions to boost my immune system. So no wonder I am getting repeated infections!

Thought this story might be of interest to you. Maybe you could ask your doc to check your immunoglobulin levels. What I am worried about is the fact that my abnormal blood results weren't highlighted until I instigated a review by my visit. Maybe this problem is more common than the medical profession recognise since we don't necessarily report to the rheumatologist all our more 'minor' ailments.

Hope you get over this latest infection soon, it is a very unpleasant condition. All the best for the future.

Pam

[Cathy777 in reply to Scorer]

That is very enlightening. I too am now on rituximab and the other usual drugs (MXT etc.). I am frequently on steroids too. I think I may get tested too. I am being investigated for nerve damage too now but only after a lot of pushing my useless rheumy nurse to listen to me.

[Janeellen in reply to Scorer]

That's really interesting as I get a lot of chest infections too which take 2 or 3 courses of antibiotics to clear. Like you I've had repeated shingles also. The next time I see my rheumy I'm definitely going to ask him @Scorer

[Cathy777]

I have similar probs to you. I am on same methotrexate injections and also have osteopenia and hypothyroidism (and breast cancer 5 years ago). I have recently had my first course of rituximab. I am now having tests for possible nerve damage as I am getting pain in wrists and other places. I do seem to get urinary infections a lot and don't know if its related. Our poor bodies are being bombarded with so many awful drugs I just assume it is not going to run smoothly any more. Yours sound worse though.

[Janeellen in reply to Cathy777]

Cathy777 I'm starting to think and believe RA brings way more problems than I ever thought it would

[Simba1992 in reply to Janeellen]

I think sadly enough this is the vicious circle that longterm immune suppressant use causes. Your immune system can no longer take care of the bacteria causing infection so you need the help of antibiotics and when you stop taking them the underlying cause has not changed.😕

[Cathy777 in reply to Janeellen]

Yes I agree. We are living very unhealthy lives despite the fact that some do get a lot of relief from drugs available today. But there is a price to pay for this onslaught on our bodies. Nothing comes without consequences. Its not that easy. I guess we are all still guinea pigs really as its still relatively early days using all these RA drugs. In time to come they will have refined this drug treatment for RA more finely I hope. At least we are helping future sufferers with our experiences.

[Scorer]

Interesting to read that others are having similar problems and I think we should all make sure our rheumatologist are aware of our problems with repeat infections. Maybe then they will take immunosuppression more seriously. When I saw my Rheumatologist I asked about reducing the dose of Rituximab. This was proposed in Leeds where I used to have my treatment as some research indicated 1/2 doses were as effective. When we moved to Cambridge I asked about this and was told it was not policy. Well now my rheumatologist is going to reduce the dose of Rituximab to 500mg rather than 1g. for my next cycle. Makes sense to me that if the reduced dose is as effective then the less of these toxic drugs we take the better.

Cathy I also had breast cancer 2006 and have had treatment for osteopenia. Took Alendronic acid for 5 years and my latest bone scan shows I am now in the normal range for my age (65). Still have to push though to get regular bone scans. Have been told 5 yearly scans are the norm on Cambridge whereas in Leeds it was 2 yearly.

Best wishes to everyone. Keep smiling.

Pam

[Cathy777 in reply to Scorer]

Hi Pam

I am same age as you and on rituximab. That is interesting that they have agreed to give only half of it now. I just had an infusion of alendronic acid which is yearly. I also have osteopenia. We seem to have very similar problems. I am getting severe wrist pain and finger problems now and its hard to tell if bio has worked as it was my first infusion a few months ago. I am having some US done on my hands soon to see what it is. Nerve damage is suspected. I do have low bone density too.

My Italian niece works at Cambridge University as a medical researcher in some areas of cancer.

[Gigi71]

I made it only once daily and stored in the fridge, when you suffer so much discomfort you will try anything. You can take Bicarbonate of soda, a teaspoon in a full glass of water There are products you can buy from a chemist for a short period. My GP said you might as well give your money straight to cranberry farmers, when I said I had been taking it with no relief. However we are all different, what suits one doesn't suit another, as proved on this site. Fortunate mine was cleared when I had urethra stretched. Have still carried on the making sure I am clean after a bowel movement. That is a time consuming though.