PMR and the kidneys

Hello Mrs O! 

Im brand new here and I'm in the U.S.  I also have had PMR for the last 5 years. My last 2 blood tests (April & July) show that I have reduced kidney function. My creatinine levels have been high and my eGRF was 40 in April and 37 this month. According to those numbers, I have stage 3 kidney disease!  I have no symptoms!  The eGFR has always been included in blood test results here. Maybe they didn't share it before because it means so little considering there are so many factors in determining kidney disease? 

My GP has not mentioned that PMR has any effect on the kidneys....but here in the U.S., PMR is not researched as well as it is in the U.K. The doctors here are not as knowledgeable as it seems yours are. Everything I've learned about PMR came from a support group on Facebook, where most of the members are from the U.K. My GP had me get an ultrasound done on my kidneys and bladder. She also had my urine tested for a possible UTI. I'm now waiting for her to get back to me with the results. Thanks for reading my post! Have a great day!  

Hello lori, and thank you for your post although I notice it is in reply to one that I wrote over 7 years ago - reading through that thread has brought back lots of lovely memories for me and since then I have actually met up with many of the members who posted here at that time, including the lovely Lizzie Ellen.

I'm sorry to hear that as well as PMR you also have CKD.  My eGFR is currently exactly the same as your's at 37, so within CKD3b.  My Creatinine is currently 122, although both figures altered dramatically recently whilst on the drug, Trimethoprim, for UTI.  That caused panic all round until my renal consultant explained that once off the Trimethoprim in all cases the kidney function returned to previous levels.  The answer is not to have the blood tested during courses of Trimethoprim or shortly afterwards!  Did frighten me though especially as I started to get symptoms of nausea which can be quite common as the kidney function declines into CKD4.

My feeling is that whilst the untreated inflammation of PMR can wreak havoc on the body, including the kidneys, once on steroids I believe they have a protective effect.  Certainly, my CKD diagnosis arriving a year into my undiagnosed PMR days, bears out this thought, although I had also taken long term Ibuprofen for the pain at that time (a no-no for those whose kidney function may be at risk - I have had just one kidney for many years).  Once on steroid treatment, my rheumatologist reassured me that the steroids wouldn't harm my sole kidney function any further - in fact, steroids are actually prescribed for some kidney problems.

Snap!  Like you, I recently had an ultrasound on my kidney and bladder following 6 months of, rare for me, continuous UTIs.  The US revealed a grey area on my bladder, and I was admitted for surgery.  Luckily for me the growth turned out to be a benign polyp, but they also found the bladder entrance to be narrowed to they carried out a bladder stretch, saying that this was far more likely to be the reason for the UTIs than the growth.  Now 4 weeks later, so far so good.  They have decided to have me back in in 6 months time just to check that the area has healed well and there is no sign of re-growth.  I would prefer to leave well alone and avoid the risk of infection but I lost the argument there!

As far as my PMR and GCA are concerned, they both went into remission approaching five years ago after some 6 1/2 years with 5 1/2 of those years on steroids, starting at 40mg per day and very slowly tapering down to zero.  The slow tapering, over lengthening periods the lower you get on the steroids is key to successfuly reaching remission for most people, remembering that each new reduced dose is a higher percentage drop than the previous one, and so a bigger obstacle for the body to adapt to.  The slower the tapering, particularly below the 7.5mg point where the adrenal glands are trying to get back up to speed again in manufacturing their own natural steroid (cortisol) production after having been suppressed by the artificial steroid, the better.

I'm so pleased that you have found a helpful support group on Facebook - there is also an active PMR group here on Patients Experience, as well as another on healthunlocked.  We are lucky here in the UK as we now have support groups dotted around the country where people can meet up and share experiences of living with PMR and/or GCA.

Lots of good luck wishes to you, Lori, on all fronts, and do come back and let us know how you get on, although I doubt many people will see these latest two posts as you have posted on a thread that is over 7 tears old.  

Hi Mrs O! 

Silly me....I realized after I posted that the thread was 7 years old! I did not expect a reply after finding that out, so thank you for your reply!! 

Is there an active thread where I can read and post about PMR here? I just joined yesterday so I haven't really looked at how to navigate the site...it's a bit confusing. 

My ultrasound results showed no sign of kidney disease! Only a few simple cysts that my doctor said was normal and not anything to worry about as long as I'm not having pain from them. So that's a relief! My urine also showed no signs of infection so my doctor has determined from those 2 tests that I am dehydrated. I don't feel dehydrated but none the less, I'm to increase my fluid intake quite a bit. In one week she wants me to have another blood test to see if there is any improvement! That's where things stand at the moment for me. 

As for my PMR....I started on 15 mg almost 5 years ago and was as high as 25 mg at one point. I'm sure that I had it for several months before being diagnosed. My previous doctor (who is now retired) didn't seem to think that the chronic pain I had told him about several times was anything to look into! He did have blood tests done on me and said all was well, except my sed. rate was high!! Um...hello!!  This is what I mean when I say that the U.S. doctors are dummies when it comes to this disease! A few months later, my new, young and enthusiastic doctor diagnosed me with PMR. He was wonderful, although we butted heads on occasion. He was high strung and he often sent me into a panic with his demeanor. After about a year, he moved to Boston and again, I had a new doctor to get used to. She was the complete opposite. She was calm and laid back....to the point that I felt like she didn't care and I was on my own as far as the PMR was concerned. But over time, I realized that she was covering two practices and overwhelmed with what the office had given her as far as the number of patients she had. On top of all,of that, she was pregnant with her first child! She had her hands full! But things settled down for her and now she is a dream of a doctor! I couldn't be happier. Because of her admitted lack of knowledge about PMR, she has referred me to a rheumatologist. Over the years, I have gotten down to 5 mg but in April I had a horrible flair and I'm back to 20 mg. I probably should have only increased by 5 but I was in desperate pain and wanted fast relief! 

Im so pleased to hear that your surgery was a success and you are doing well 4 weeks later! Your story is fascinating and I find that I learn so much from talking to people who have this disease. 

Thank you again for taking the the time to reply to my post! I will look around and get acclimated with the site to see what I can learn! 

Have a lovely afternoon!! ??

Hello again, Lori

What great news about your ultrasound result - PMR is more than enought to cope with, without further dramas joining in the fun!

I'm sorry to hear about your recent flare, especially after so many years on treatment.  I agree you may have fared just as well if you had increased to a dose somewhat lower than 20mg.  The usual rule of thumb is if you are suddenly aware of increasing pain that resembles flaring inflammation, you should firstly try going back to the last dose at which you felt comfortable.  Increasing to 20mg from 5mg does sound like overkill.  It's reassuring to hear that after all this time and frequent flares you are being referred to a rheumatologist - let's hope s/he is a good one.  If you have managed to get to 5mg on previous occasions, then it might just be that you are either not staying there for long enough or are reducing in too large decrements.  I had a severe flare at the 5mg dose but, being no wiser at the time, I followed my medic's advice to continue reducing by his plan of 1mg a month.  By the time I got to 3mg, I was almost back to square one and facing being bedbound again.  I was then advised to increase back to 10mg and very slowly tapered back down to 5mg where I was kept for 5-6 months.  I baulked a bit at the time but with hindsight it was the very best advice.  Although after all those months I was then advised I could return to decreasing back down again by 1mg a month, I thought "Oh no, Jose, it didn't work before, why would it work now".  Plus I was that much wiser having read the experience of a man in Sweden called Ragnar who posted about his inability to reduce below 5mg until he thought he'd try reducing on just one day out of four.  That proved successful for him, so I thought I'd try it even slower, reducing in half mg decrements but only on one day of the week, increasing the number of days at the new dose by one day each week.  It proved a snail's pace to remission but it doesn't matter how slowly one tapers, as long as it works!  Since that time, many people have found that reducing in this way or along very similar lines worked out to suit themselves has proved equally successful.

If you want to find all the threads relating to PMR/GCA, just go to the top of this page and click on the words 'Polymyalgia Rheumatica and Giant Cell Arteritis' in the line marked in red, and this will bring you to a load of posts under different headings - happy reading! 

Hi again Mrs O! 

Sorry that I haven't responded until now. I've been very upset all week and the last thing I wanted to do what think about the possibility of having CKD. I went for my second blood test yesterday after a week of what seemed like I was drowning myself from drinking extra water! All that managed to accomplish was me getting up to go to the bathroom during the night even more than I was before this started! I received my new results and my creatinine level is even higher than it was last week!!! I'm so frustrated and worried! My eGFR has gone down again also. It's now 34 and my creatinine is 1.63! I'm freaking out and I'm waiting to hear from my doctor!  I've been doing some research on CKD and PMR and I've found in every article that muscles release creatine that turns into creatinine which is what the kidneys remove. If you have a muscle disease, that can also effect the amount of creatinine that the kidneys must remove. To me it sounds like PMR can cause CKD!! What I don't understand is why now after 5 years, would I be having a problem with my kidneys? Until April, my PMR was in control and then the flare happened. My creatinine level started to increase right about that time. I'm confused on why it's continuing to increase even though my PMR is back in control because I increased my Pred dose. When I pose these questions to my GP, she either has no answer for it or says she doesn't think the two are related!! I'm still waiting for an appointment with a rheumatologist. Hopefully they will be able to shed some light on this for me. 

Since this thread is so old....I looked over the forum like you suggested that I read. Other that this one, I did not see a topic about PMR and CKD. I might start one. 

Thanks for all your help and for replying to me! 

Have a a lovely day!!