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ingemlb
03-02-2014, 03:33 PM
The other day a friend who is also on steroids told me he had a very slight cold. A week later he had a very bad attack of Strep infection. He explained that due to the steroids the "slight cold" didn't behave as usual and flare up with fever and all the usual immune system responses so he ignored it thinking indeed it was "slight"

This got me thinking. It's my first time on immuno-suppressive drugs. How do I now tell when I have an infection that needs treating. For instance I arrived at the hospital with a UTI which had started last November, treated by antibiotics appeared to be cleared up but I was told I needed another test done 4 weeks after finishing the antibiotics which was done the day before I got into hospital. Result, UTI was still lurking there. So another 2 lots of antibiotics. Of course all the tests after that showed no issues however it's not yet been 4 weeks since the last dose of antibiotics so will have to go for another urine test. The last time it was without symptoms. So unless I had done the urine tests I would not have known about it. I am a bit on the paranoid side with UTI's as my mother had them without stopping the last few years of her life. I kept sending her back to doctors for tests as she never felt the symptoms and it would always be about 6 weeks between courses of antibiotics in actual fact she was never without a UTI. Eventually she developed cancer of the bladder. Research on the net showed me that for older people who have these recurring UTI's they should just be kept on antibiotics and somewhere I read that bladder cancer can be caused by recurring UTI's.

Ok that aside. .. there are other infections. How do they present themselves when our immune system has been suppressed? What should I need to look for and get checked for whilst on these drugs? (Prednisolone, Methotrexate)

windchime
03-03-2014, 02:16 AM
Hi Inge glad you're out of the hospital and in the comfort of your own home. Have you seen a urologist and if so has he looked into your bladder with a scope? If not you might consider seeing a urologist and explaining your current situation. I would think that if you're prone to bladder infections, you should be under the care of a urologist to monitor the situation. I too am prone to them and they lurk and I don't necessarily know I have them unless I get a test or they get bad enough that I have blood and pain. I see a urologist once a year for a general check and more often if an infection presents itself. One thing that I did find out is that when I use scented soaps I get an infection so now I only use unscented soaps period. It has worked for me for 2 years now. Yay!!! I think there are home tests out there where you can test for blood in the urine. Good luck.

Pete
03-03-2014, 03:15 AM
My rule of thumb is that if the new symptoms continue to worsen after a couple of days, a call to the doctor is warranted. I usually start with my PCP as he's pretty perceptive and is an extra set of eyes on my wegs. If he's stumped, I call my rheumy at Cleveland Clinic. With regards to calling the doc, the best case scenario is that it's a false alarm, and I don't like to think about the worst case...

I have monthly labs done, so not too much time elapses between tests that would allow a hidden condition to worsen.

You can get urinalysis blood test strips (as well as for other substances) at Amazon.com. Sounds like it would probably be a good idea for you to test your urine for blood weekly. That would give you the early jump on any infection and you could get it treated before it gets too severe.

ingemlb
03-03-2014, 05:30 AM
Hi Inge glad you're out of the hospital and in the comfort of your own home. Have you seen a urologist and if so has he looked into your bladder with a scope? If not you might consider seeing a urologist and explaining your current situation. I would think that if you're prone to bladder infections, you should be under the care of a urologist to monitor the situation. I too am prone to them and they lurk and I don't necessarily know I have them unless I get a test or they get bad enough that I have blood and pain. I see a urologist once a year for a general check and more often if an infection presents itself. One thing that I did find out is that when I use scented soaps I get an infection so now I only use unscented soaps period. It has worked for me for 2 years now. Yay!!! I think there are home tests out there where you can test for blood in the urine. Good luck.
Hi Cindy. Another "ist" right now not sure if I can manage lol. Nobody mentioned Urologist. The first time I was tested positive for UTI was in November whilst I was hospitalised during a very nasty gastric outbreak, dehydrated within 24 hours. I had a very high fever and the night before going to hospital had very bad pains in the urinary tract area but only for a few hours but also kept feeling pressure to empty my bladder but nothing doing. Diarrhea was sending me to the toilet an average of 20 times a day (had to record it for the nurses). They did a urine test and found bacteria which normally lives in the bowels. We figured it was the ferocity of the diarrhea which had spread it to the Urinary tract. I was given 2 doses of Antibiotics and according to urine tests it cleared the infection however they couldn't find a reason for the gastric outbreak. non viral non bacterial so referred me back to my specialist (actually a surgeon who had looked after my bowels since the 80's and did regular colonoscopies/gastroscopies and discovered the inflamed ileum and the gastric ulcers) and he said to wait 4 weeks take another urine test as these things were difficult to shift.
So the day before I went into hospital on Jan 20th I took a urine sample to pathology (I was worried they would put me immediately onto antibiotics and hide the symptoms). At that stage I had no symptom at all and expected the test to come back clear but the same bugs were still found lurking around and so another 2 lots of antibiotics were administered in the hospital. Several nights I seemed to run a lot to empty my bladder but other than that no symptoms at all. Kidney was scanned and no blood in the urine. So they assumed my kidneys are fine but I am seeing the new GP on Friday so will ask him to prescribe another urine test. I don't think they ever found blood in the urine but I may be wrong. If this still hasn't cleared up will take your advise and ask for a referral to a Urologist. As I mentioned above it is something I am rather nervous about given my mother's long history with the UTI's but then she was on insulin since her 40's bad had rather badly controlled diabetes and lost her eyesight and had bad neuropathy as a result of it. She didn't believe in being careful with sugar just adjusted the insulin as needed but a lot of the time the sugar was far too high.

ingemlb
03-03-2014, 05:34 AM
My rule of thumb is that if the new symptoms continue to worsen after a couple of days, a call to the doctor is warranted. I usually start with my PCP as he's pretty perceptive and is an extra set of eyes on my wegs. If he's stumped, I call my rheumy at Cleveland Clinic. With regards to calling the doc, the best case scenario is that it's a false alarm, and I don't like to think about the worst case...

I have monthly labs done, so not too much time elapses between tests that would allow a hidden condition to worsen.

You can get urinalysis blood test strips (as well as for other substances) at Amazon.com. Sounds like it would probably be a good idea for you to test your urine for blood weekly. That would give you the early jump on any infection and you could get it treated before it gets too severe.

Thanks Pete. I will look into the strips. I think I tried finding them once for Mum and had no luck in Australia. Last time I tried to order anything via Amazon.com they claimed they don't post to my address :( But it would be good to do the regular tests. I will be seeing my Rheumatologist monthly apparently and a week before I go will have the blood tests done. By then he should have the results. He is my main treating doctor because I guess it was the vasculitis that drew the attention to the Wegener's. The other specialists I aim to see in 6 months time apart from having my eyes rechecked now that I have this diagnosis. They told me to allow about 6 months to see if the treatment is working on the other areas (so far obviously working on the joints).

drz
03-03-2014, 07:20 AM
I got the strips at my pharmacy but they had to special order them after a doctor prescribed them.

Rose
03-03-2014, 09:30 AM
I get my strips from a company in Pretoria, South Africa and I see on their web site that they ship to the UK, USA, Australia...all over. ..and they were much cheaper than the pharmacy wanted to charge me. They are quality strips made in Germany. The strips test for blood, bilirubin, protein, nitrates, keytones, glucose. ph. SG and leucocytes. So very comprehensive. Included is an informative leaflet. Anyone interested can PM me and i will direct you to their web site.

Rose

ingemlb
03-03-2014, 11:16 AM
I get my strips from a company in Pretoria, South Africa and I see on their web site that they ship to the UK, USA, Australia...all over. ..and they were much cheaper than the pharmacy wanted to charge me. They are quality strips made in Germany. The strips test for blood, bilirubin, protein, nitrates, keytones, glucose. ph. SG and leucocytes. So very comprehensive. Included is an informative leaflet. Anyone interested can PM me and i will direct you to their web site.

Rose
Rose do you have a URL for this company? I may try to order them myself that way.