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Not knowing what to do, with a UTI and prednidone

Posted , 9 users are following.

margot34956
margot34956

Hello to you all, I have slowly been getting more pain and stiffness, then felt a UTI, so made an apt at my GP, I have been on 7.5mg pred for 27 days after 8mg, G.P said to go up to 15mg for 3 days then 10mg for 3 days then back to 7.5 not sure for how long.

I was diagnosed in Nov2017, started with 10mg then increased to 40mg after suspected GCA, I don't remember for how long, I wasn't keeping records back then, then 20mg and 15 then 12.5 for about 5 weeks.

Since then I have got down to 7.5 using the DSNS way, I have never been pain free and CRP has not been lower than 8, mostly around 16.

My question is would the UTI have been the cause of the increased pain or was I heading for a flare? I know that is maybe impossible to answer. So my next question is, I have done the 3 days on 15, G.Ps instructions are to go to 10 for the next 3 days, I have not had too much of a decrease in pain, definitely some, but am feeling like crap which I believe is the increase of pred, now the question, should I stay on 15 or take 10 for 3 days and then back to 7.5?

Thanks

0 likes, 22 replies

22 Replies

  • Roberta125
    Roberta125 margot34956

    Posted

    Did you get an antibiotic for UTI?  I was given Clindycin and it totally wiped out my pred.  Can only take Nitrofurantoin. You may react differently but it could be antibiotic. I also found that at 7.5mg in am and 2 mg pm really helped me to reduce.  Use dsns and reduce only .5 mg am at a time. Good luck. 
    • margot34956
      margot34956 Roberta125

      Posted

      Hi Roberta, thanks for your reply, yes I did get an antibiotic for the UTI, I had the increase in pain before the antibiotic, I was wondering if the infection itself could have increased the inflammation.

      That is a great help for reduction though, 7.5mg morning and 2mg pm, I am quite excited to try that. Thank you for that.

      The antibiotic is Nitrofurantoin.

    • Michdonn
      Michdonn margot34956

      Posted

      Margot, I firmly believe that a virus infection has brought about my PMR and several flares thereafter. So yes I believe that an infection can have an effect on our immune system affecting our PMR. Think positive get over the infection get active and I smile. ☺️
  • EileenH
    EileenH margot34956

    Posted

    Yes, it is quite likely that any infection can be enough to upset your immune system and make it more active in the PMR. Really you need to do what he said - a UTI is enough to make you feel like crap as well as the increase in pred AND an antibiotic. I have to say I have never bothered increasing the pred during an infection. I just accept I felt rubbish because of it!

    Has the UTI cleared?

    • margot34956
      margot34956 EileenH

      Posted

      Hello Eileen, How are you?

      I have access to my medical records on line now and looked the results of the urine culture and from what I understand it seems I don't have an UTI, I had the symptoms of one on Friday, made an appointment on Friday,  the results came in on Tuesday, [today] I started antibiotics on Friday, G.P did a test and there was blood present in the urine. I still have the symptoms. Quite confused now.

      Thanks for your reply

    • ptolemy
      ptolemy margot34956

      Posted

      Hi Margot, I can get my information on-line now too, which is great, the only trouble is that they do not give you all the information, so it can be confusing.
    • Twopies
      Twopies margot34956

      Posted

      I had blood in my urine—a lot—until I got on the lower dose of prednisone—I’m thinking 6ish?  No infection, just all the symptoms of a uti.  Think it took a year or more before it settled down?  We’re all different, not suggesting this is what you are experiencing.  I have read that it was the pred, I read it was the pmr weakening the bladder so that it doesn’t fully evacuate.  For what it’s worth, both ultrasound and sonogram showed my bladder not fully evacuating—this was in the very early stages of pmr.  I’m doing better now—at 5 mg.  Best wishes to you!  
    • margot34956
      margot34956 Twopies

      Posted

      Thank you Twopies, that's will be exactly what I have too, all the symptoms but no UTI, I know if I stay on the toilet after going, I do some more, that must be the bladder not fully evacuating.

      so helpful to know. I have been wondering all day.

      Thanks. Best wishes to you too!

    • margot34956
      margot34956 ptolemy

      Posted

      Oh, I am confused enough, maybe best not to take on line records too seriously.

      Thanks ptolemy

    • EileenH
      EileenH margot34956

      Posted

      That is one technique recommended for helping to prevent problems - always waiting about 20 seconds when you have "finished" and then trying again. It is called "double voiding" - and this article describes several variations:

      https://www.medicalnewstoday.com/articles/316706.php

      It was a problem I had years ago (so it isn't just pred or PMR affecting the muscles) and I was referred to the urology team. They did a scope of the inside of the bladder and told me there were signs of many old small infections on the bladder walls. They also decided the urethra, the tube connecting the bladder to the outside was too narrow so they stretched it. The result was nearly 10 years with no signs of a UTI. When the symptoms returned it was repeated - another 10 years or so of freedom. Now I'm on the third 10 years!! It is well worth having done if you are offered it.

    • margot34956
      margot34956 EileenH

      Posted

      OH my! that is so interesting! that would explain the symptoms without the infection. Thanks for sharing
  • Anhaga
    Anhaga margot34956

    Posted

    You have only been on pred since November last year?  And you have never been pain free.  Does the level of pain remain the same with each taper, or has it increased again over time, setting aside this current episode with the uti?

    I reduced my dosage in a similar time frame, but from a lower starting dose, and to that point had been pain free.  We should always aim for the same level of relief we got at the beginning of treatment at our highest dose, although there are often other issues not related to PMR which cause pain and which re-emerge as the dose declines.

    So although the uti itself may not have any significant relevance to your pred dose, I'm wondering whether prior to this episode you have reduced a little too far a little too soon?  

    • margot34956
      margot34956 Anhaga

      Posted

      Hi Anhaga, I am wondering the same thing, because the answer is yes to your question, about the pain slowly increasing over time. The three days I have been on 15mg have made a small difference in pain levels.

      I am thinking too, a little too far too soon.

      Thanks for your help. Hope you are getting there

       

  • Michdonn
    Michdonn margot34956

    Posted

    Hi Margot, we are all different, I will not reduce my Prednisone if I have any PMR pain and have been basically pain-free since last June. When tapering I try never to reduce by more than 10% , I use the DSNS method to taper. I would increase my dosage, get PMR pain free to get control of the inflammation, then start reducing the Pred. I feel like is to short to be in pain. Good luck on your journey. Stay active, positive and try to smile. ☺️
    • patricia38799
      patricia38799 Michdonn

      Posted

      Hi Michdonn, great you are pain free, are you still taking prednisone? if so what dosage and  when will you reduce. I was pain free for  weeks no prednisone then a flare and the doctor said  after I had a blood test with signs of inflammation still, said he thought it was arthritis, and I have been taking Celebrex

      which has helped 80% but I cannot go off then for 2 days without a set back,. Think I will go back on prednisone again, could be Myalgia back. I wonder how you can really tell what one has if not by the CPR and ESR test? does anyone now an accurate test?

    • Michdonn
      Michdonn patricia38799

      Posted

      Patricia, I am currently on 7 mg tapering to 6.5 using DSNS. I am very active, so from time to time I do over do it, then I must decide PMR or what I did. Try to listen to your body, does it feel like PMR or did I over do it. Take additional Pred, no help try some NSAIDS. Believe me from last year when I could not walk, till today I try to exercise every day. But first I had to get PMR pain free. The first couple of months after my bad flare were horrible. I don't know what I would have done without the Forum. EileenH and others got me moving. Thank God. Now think positive and try to smile. ??

    • margot34956
      margot34956 Michdonn

      Posted

      Hi Michdonn, thanks for your reply and help, I have not reduced more than 10%, using the DSNS method.

      I have increased to 15 mg for three days on G.P's instructions and three days on 10mg. Would you advise staying on 15mg or 10mg? until the pain has completely gone.

      staying active is easy, positive not so easy. This group is wonderful for that. Thanks .

      Hope you are doing O.K

    • EileenH
      EileenH patricia38799

      Posted

      There is no definitive test for PMR - it is a clinical diagnosis, made on the basis of signs and symptoms and rulling out other possibilities. The CRP and ESR just tell you there is inflammation - but not what or where, they can be raised in many conditions that can look very similar .

      For anyone who has had PMR symptoms return soon after stopping pred the first thought MUST be that the underlying autoimmune cause of the symptoms is still active - and was being managed OK by a very low dose.

      And personally? I'd far rather be on a low dose of pred than Celebrex!!!!!

    • Michdonn
      Michdonn margot34956

      Posted

      I would stay on the 15 and if the PMR pain is not gone increase to 20, get pain free. I had to increase to 30 mg and stay on 30 mg for 6 weeks. But the Rheumy want me to increase by only a few mg and the inflammation got ahead of the Pred and I ended up in a wheelchair. It has been a long hard road back and I am still not in the condition I was. I know that because today I rode 25 miles with friends and I am still in the recovery stage. Think positive, stay active with a smile on my face. ☺️
    • patricia38799
      patricia38799 EileenH

      Posted

      Thanks Eileen, I felt that Celebrex was doing me more harm. as well. my blood pressure went up to 160/78 was 140/80 a week ago. so have decided to go back on 5mg prednisone soon  if needed.  Am on nothing at the moment with just a little neck pain.
    • margot34956
      margot34956 Michdonn

      Posted

      Thank so much! Michdonn, I have been trying to decide all day what to do now that the three days of being on 15 are up and still in pain though not as much, the G.P is no help in that they just don't know and have told me to listen to my body, G.P advised to go back to the 7.5 I was on before the 15mg after 3 days of 10mg.

      I am going to take your advise as you have experienced the inflammation getting ahead of the pred and ending up in a wheelchair. You must have been devastated!

      I will stay on the 15mg.

      Well done you! 25 miles is incredible! That's encouraging.

      Thanks for your help.

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