Hi all,
I'm a GCA patient since AUG 22, currently on 30 mg pred having decreased from 60 mg. Aside from DREADFUL fatigue and tired and blurry vision, I'm now being woken up at night by back aches in area of my kidneys.
I just had a complete blood workup 2 weeks ago which included kidney function and all was well. They also took urine sample... nothing there either.
Have any of you experienced anything like this?
Thank you!
A lot can happen in 2 weeks, and although urine sample was okay then, doesn’t mean it is now - sounds like a urine infection - think it needs checking again.
Hmmm.. wouldn't a urine infection cause bladder pain, as opposed to kidney pain?
not necessarily…..
Perhaps a UTI and I suppose how far it's progressed? I've been experiencing pain on my left side, for awhile now and think I have a UTI as the pain is before I have to "run" to the loo. I do have to see my GP, no matter how reluctantly to get this checked out. This morning sharp pain in bladder area. Also have GCA and on 60 mg of Pred at this time, and so many other supplements and things. My urinary tract is probably crying out for help. If I could get hold of the rheumy, I would.
Did they do a dipstick test or send the urine off for culture?
Hmmmm... not sure, but I think it was sent out for culture. It took about 12 hours to get results
Wasn't a culture if you got results in 12 hours - they take at least a couple of days.
Oh! Okay. Thank you
Hmm, you can’t make bugs grow that fast. The earliest preliminary result I’ve seen is 3 days, unless they’ve got some clever tech.
I agree with DL - and will add that kidney infections don't always show up in urine tests. The symptoms are as important as urine dips in older patients.
But wouldn't kidney infections show up in blood work?
Not necessarily, they are more longer term indicators and it was 2 weeks ago , a lot can change in that time
Have any other possibilities for the pain been suggested? 💞
No. I'll wait and see for at least a day. Better when I'm up and walung around. Could simply be muscular.
I'm having similar issues. I have PMR and GCA. Recent MRI scan indicated that I had trochanteric bursitis which is an indicator of PMR. are you sure you don't also have PMR? Inactivity exacerbates the pain and stiffness as does too much exercise.
Thanks for relating to this. I was actually a PMR sufferer about 8 years ago, so I know what that's all about. Come to think of it, this does mimic that -- but to a much lesser extent. And I'm on very high doses of prednisone (30 MG), coming down from 60. I was never at those high doses with PMR, so that thought of PMR never entered my mind. Gees. As for the MRI, I keep getting mixed messages on that. I thought that the MRI would be relatively useless once a person is put on high doses of PRED. If not, I'll have to pursue this with the Rheumy.
Thanks again for chiming in!
Trochanteric bursitis is a bit different - 30mg will send PMR muscle stiffness and pain packing, it will be less effective on bursitis but would be plenty to take the edge off so you didn't think "PMR".
Thank you!
This may sound like a no brainer, but I would suggest you drink more water over the course of the day to see if this would help ease your kidney pain.
I went into Stage 3 kidney disease from me not drinking enough water throughout the day and was experiencing severe back pain.
Initially, I had no idea I was having kidney problems until I went to an emergency clinic that ordered tests where after the labs came back they went as far as calling me on the phone suggesting I see a nephrologist asap of which the Dr. recommended that I drink 2 liters of water a day, and sure enough, my kidney function greatly improved and my back pain dissipated.
But there are times where I am not as diligent in drinking enough water throughout the day and when that happens I usually wake up in the morning with kidney pain after I pee. Also, if my first morning pee is cloudy this also tells me that I'm not drinking enough and that I am really dehydrated.
As a rule, I always make sure I have a tall glass of water by my bedside to sip after I get up to pee in the middle of the night and then to also drink when I first get up in the morning.
Thank you for this. I am very guilty about not drinking enough water. According to what I've read, I'm supposed to drink half my weight (in ounces) each day, which for me would be about 90 oz per day. That's about 7 tall glasses of water a day. I drink about 3 at the most. So thanks for the reminder -- and I'm sorry to hear of your kidney problem.
Thank you back, and for you, I do hope your back pain revolves with just simply hydrating more. 🙏
This may have nothing to do with your kidneys but rather your back muscles. If you're a back sleeper try sleeping with something under your knees. If you're a side sleeper try sleeping with something between your knees too. You might also want to try ice on the affected areas. Or alternate heat and ice.
Yeah, thanks for this. The pain wanders around at night, and also during the day. Right now, it's my lower back right in the center of my spine -- but also in the area of my left hip. Yesterday it felt like it was going up and down my spine. All this happened a week after decreasing from 40 MG to 30 MG PRED. I'm hoping that it's not a PRED issue.
As for your observations and recommendations, thanks. But I'm 75 years old and have been sleeping the way I sleep "forever." I'm wondering why this would happen now. Hmmmm..
That is a 25% decrease in dose - recommendations are not more than 10%! 5mg at a time might be preferable!
Gees, I thought I had this straight. I thought one of the "approved" reductions was 60 mg for 4 weeks, then 50 for 4 weeks, then 40 for 4 week, then 30 for 4 weeks, then 20 for 4 week AND THEN embrace one of the much slower reductions.
I did some 10mg drops with my GCA -but I did start at 80mg for 2 weeks, then 60mg for 8 weeks -and that made a big difference to the disease being under control from the start-which made subsequent tapers much easier.
Thanks. You know, I've never had a good feeling about whether or not the GCA is under control. I've been on high doses since AUG and still feel AWFUL. You, and others, have suggested that you should feel fairly well if you've taken enough PRED to control the GCA. I never have felt well. But as I keep saying, I'm not sure whether it's the PRED itself that's making me miserable OR the GCA that might be still festering. My main problems are FATIGUE and vision issues (including double vision when I tilt my head side to side). Thanks again for your experience, input, and advice.
Approved by rheumies maybe! Customer Experience often suggest a different story! And at the really high doses 10mg might be OK - but by 40mg you are back in moderately high dose territory.
As pMRpro says that's probably too big a reduction. Hydration is critical. I still think it could be bursitis and that does affect the muscles. It turns out I've also got low BP and the GP saw me today and recommended I reduce my bisoprolol and stop ramipril and halve the furocemide. Since my heart valve has shown improvement she couldn't see why they were still proscribing these . It is what I have been saying that there is no integrated communication and the feedback from specialists is 2 months behind their consultations with no interaction with the patient.
Yes mine started off like that now I got .bad ankle pain and a knee that twists
Pain in neck, shoulders and arms
Hip Pain is it PMR or in need of hip replacement 
feeling a bit of tenderness in back
Update after Rheumy apt - Tingling legs, arms and pain on right temple area.
Tired of gca, pmr, osteoporosis, back issues
