I haven’t posted for a while, but I read nearly all the posts and respond when I think I have something useful to say. I was diagnosed with PMR in April 2018 and suspected GCA in March 2019. The biopsy was negative. I reduced the pred down to 7mg by July 2020 and having been following the DSNS reduction and am now on 4½mg.
I have been experiencing all the adrenal insufficiency problem which have been getting worse – breathlessness, (this is exacerbated by the crook I now have in my back from an injury in Feb 2020 which has never been diagnosed – most likely wedge fractures I suppose!) dizzy spells, feeling of nearly fainting and nausea. So, wondering if I should have a blood test or something, I made a telephone appointment with my GP. on the morning of the appointment he phoned and asked me to go in. He took blood and when I asked him about continuing with the pred reduction he told me to stay where I was until the test results. When I looked at the test results there were three – egfrcreat (ckd-epi)/1.73 m*2 – no result shown, SeN-term pro BNP conc – 806ng/l. Abnormal. Urea and eloctrolytes – serum creatinine 102 umol/L 102 abnormal. This has gone down a bit since I had the blood test after the Zolendronate infusion I had in May this year. I had a Dexa scan in January and agreed to this because my rheumatologist said I had had several fractures! When I asked if he could tell this from the dexa scan he was a bit evasive. I am still limited with pain from last years injury (for want of a better word) and the thought of going through that again is very frightening.
So my question after such a long and detailed post is – I know the infusion can cause kidney problems but that seems to be improving, but can it affect the heart? – I had a stress echocardiogram in July 2020 and was told my heart was good. Also, should I continue decreasing pred?
Many thanks for reading this and all the invaluable information you provide.
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Omanain
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Sorry not quite clear - which came first, the dexscan or the rheumy saying you had had spinal fractures?
It really is a bit early for getting cortisol blood tests - they aren't really meaningful until you are down to 3mg but it sounds as if you are getting the effects of poor adrenal function now I'd suggest slowing the reduction down. One very good PMR rheumy likes to keep patients at 5mg for up to 9 months to let the body catch up and finds the onward journey is easier as a result.
Do the results give the range for creatinine? I'd have thought that was OK but maybe they have a different normal range to the 50-120 I see quoted online. Do you have palpitations? Did the doctor say why he was doing the BNP?
I told the rheumy that I wanted the result of the dexa scan before I would decide whether or not to have the infusion. I received a letter in which he said Your bone density shows no significant deterioration compared to a previous scan. The lowest bone density being in the area around the left hip at a level we term osteopnia. We can also see on the scan that you have had previous fractures of your vertebral spine. Even though the scan provided relative reassurance it is important to remember that despite this you have had a number of fractures and of course you will continue to require prednisolone which is a risk factor for further bone thinning and fractures.The only fracture I have had diagnosed is the one in my right hip!
The GP didn't mention why he was doing the BNP, I thought he was testing for inflammation.
I think he was concerned about the kidney function results because mine had previously been good.
Thank you for your advice, I think I will go back to 5mg pred and stay there for a few months and see how I feel.
"Conditions associated with elevated BNP other than CHF are as follows: Acute renal failure and chronic renal failure. Hypertension (HTN) Pulmonary diseases such as pulmonary hypertension, severe chronic obstructive pulmonary disease (COPD), pneumonia, pulmonary embolism, adult respiratory distress syndrome (ARDS)"
It can be raised in renal failure but there are other tests much more commonly used - the creatinine and the eGFR (estimated glomerular filtration rate) above all. The listing of it as "other causes" is so people remember a raised BNP many NOT be cardiac! It can even be raised if you are dehydrated. It rises with aging and women have higher levels than men.
The rheumy can say "osteopenia" - but he does need to qualify whether the t-score was -1.1 (-1.0 is normal) or -2.4 (-2.5 and worse is osteoporosis). They are all osteopenia but there is a massive difference and the top half is considered not to require intervention other than exercise and calcium/vit D supplements. And he admitted there is little change from the last.
It all sounds like half a story to me! At least your GP is having a look - but as piglette says, without a figure for the renal tests it is difficult to make sense of it.
When I saw him, he said the kidney functions test readings were odd because mine had always been good! He repeated those tests and it seems to be improving. The BNP came back last week and the receptionist phoned to say the next step was an ECG which I had on Monday- The earliest appointment I could get to see him is 3rd September.
If you have a high BNP reading I would have thought they would be quite fast compared to some other ailments which can take months. You had the ECG pretty quickly after getting the results of the BNP. I assume your GP might prescribe a medication to reduce the reading on 3 September which is less than three weeks time. I had a nasty lesion in September last year and my GP referred me to plastics, I got an appointment in February. Also I had fainted three times in September and the hospital where I fainted while an in patient was worried about heart problems, I had my first appointment on the phone with a Consultant in April and have had the latest test three weeks ago.
My legs look like I have been in a car accident! I am sick and tired of tests and then nothing. My brother reckons they haven’t a clue, but if anything happens to me that they have not yet diagnosed they can always say we are in the middle of doing tests!! Which is a great excuse.
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