My last visit to my rheumatologist she recommended I see an endocrinologist because my most recent Dexa scan (2022) hadn’t improved from my last one (2020).
My Dexa scans say osteopenia but my rheumatologist looks at the reports and there’s some other formula that brings me into osteoporosis. So she put me on Reclast and didn’t see any signs of improvement after a couple scans. I’ve done 3 yearly infusions. With no more scheduled.
So the endo wonders why the osteoporosis diognosis she says osteopenia. And not to take any more bone strengthening drugs…..The second thing I brought up was my to reduce steroids….. I was diagnosed with PMR in 2011. Have had had a rollercoaster of prednisone amounts. Around 3mg I start to get stiffness and fatigue. So she put me on Hydrocortisone. 10mg in am and 10mg in afternoon for a month. Month two 10mg in am and 5mg in pm. Then a cortisol blood test. I’ll hear from her. I was on 5 mg prednisone before I switched to hydrocortisone.
A few months ago when I saw a different rheumatologist at was at that magic 3 mg my sed rate and cross we’re in the normal range, just under the limit. She said it wasn’t PMR because of the markers. We had a discussion about that. She ordered an IL-6 blood test. It is slightly raised. It’s at 9.1 and norm is less than 6.3.
Your thoughts as to the ramble above.?
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1951grumpa
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Why on earth did your most recent roomy say that it was not PMR as your markers were not raised? Surely the whole point of taking steroids is to get your inflammation markers, raised by the PMR, to a normal level, which seems to have happened.
I did look back at the note I received a f ew days after my IL6 blood test and a hip x-ray I’d had. At the end of the she said that the anything that causes inflammation in the body like an infection or tumor can cause raised IL6, but since I have neither it could be from the PMR to stay on the 5mg and follow up with my local rheumatologist.
"anything that causes inflammation in the body like an infection or tumor can cause raised IL6"
That is true at one extreme - but IL-6 is only one of a wide range of inflammatory cytokines and so it isn't "anything" could cause it. Different illnesses are caused by different cytokines.
Some doctors are really evangelical about these bone drugs such as Alendronic Acid, I felt under bullying pressure to take it without any evidence of a lack of bone density. My DEXA Scan subsequently showed that I had the “ bones of a 30 year old”. I have been left alone since. These are serious drugs, not to be taken lightly.
I've never taken anything for my bones as couldn't tolerate Adcal. Even after 11 years on steroids my bones are to quote 'pretty good for someone of my age'. Might just be luck, who knows, but it shows the AA isn't essential. I do try and get plenty of calcium in my diet eg a bit of cheese every day and geen leafy veg
"So she put me on Reclast and didn’t see any signs of improvement after a couple scans."
Why on earth do they not learn how the bisphosphonates work? For most patients the use of bisphosphonates is to maintain the level of bone density at the point it was at when started - it is quite unusual for bone density to increase when using just bisphosphonates. If the desire is to increase bone density, other drugs must be used such as Forteo or Prolia which actively build bone and increase bone density.
She is a tad clueless - the reason your inflammatory markers are in the normal range is because you are on enough pred to mop up all the inflammation the underlying autoimmune cause of the symptoms we call PMR is creating. As long as they are normal, you are on enough pred. That is WHY they use pred for PMR. It isn't a cure, it is a management strategy and they only work when implements properly.
The symptoms returned at 3mg because it was slightly too low to manage all the inflammation and it builds up again enough to cause symptoms. Switching to hydrocortisone is risky - even if you are on the equivalent amount of corticosteroid it isn't as effective an antiinflammatory and so doesn't manage the symptoms as well as well as being out of the system quicker.
I really am left to ask what some of them learnt at uni!!!!!
I wasn’t aware that biophosphonates were to maintain a level. I did ask why I couldn’t take Prolia shots p like my wife does and she said that I’d have to have broken a bone first to qualify for it’s use.
After reading all above, wondering if I would be better with Prolia rather than Zolendronic acid infusion? Given that Rheumy hasn't requested Zolendronic infusion as yet and changed her diagnosis from osteopenia to osteoporosis (but doesn't know the difference)....or maybe both treatments if they do that. Also given that I now have many small spinal fractures. If she does call today (which I'm not banking on), I will request another dexascan. TIA
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