Sorry need some advice and to vent. So have been to the hospital to see my Renal doctor, she took one look 👀 at me on my walking stick and asked what was going on, and I explained to her that all my bone hurt, she immediately told me that I had Renal Bone Disease (Go me hit the jackpot!!) I only see Renal once a year, and have not seen her for 2 years.(she is an amazing doctor by the way)
She done a whole lot of blood tests which have confirmed Renal Bone Disease because of secondary hyper parathyroid, however my rheumatoid factor has come back negative!! While I was at the hospital having my hand injected for CTS, I asked the doctor if it was possible that I didn't have RA, she felt that I did indeed have RA as well as RBD.
Question is it possible to have positive RA factor then have a negative RA factor?
One of the things I'm not happy with is that I see rheumatology every six months and more often in the last 2 years since I had a melt down at the hospital because of bone pain, not only did I feel dismissed but not once have they or my GP considered this is what could be going on even with low Vitamin-D and high phosphate, because my calcium was low normal. I have discovered this is something all Renal patients can get once your GFR goes below 50%.
The other thing is it causes osteoporosis, when I had my last hand X-ray the radiographer said I had osteoporosis, but when I asked the doctor if this was the case, I was told not to be so silly!! as you can imagine I now have very serious concerns that the radiographer was right, I have made an appointment with GP to ask for a Bone density scan done.
Have any of you had this done what can I expect?
As you can imagine I'm really frustrated with the rheumatologist for not even considering this and telling me she thinks I might have fibromyalgia, I have put a call in to see the rheumatologist sooner than next March but not surprisingly they have not come back yet, but I having the other hand injected today so I will ask the doctor this afternoon.
Sorry such a long post but frustrated with NHS.
Anyway put a lovely picture of my puppy 🐶 for you all to see 😘
Jan
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JanWellcome
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If you're talking about a DEXA scan for bone density I thought it was a standard screening test for the over 55's so perhaps you're too young! Anywayi had one a couple of years ago, and was quick and easy. More like being photocopied as you lie down and they pass a scanner over you.
And yes it's quite possible for the RF antibodies to vary. there was a post about this a couple of days ago. LInk here.....
If you have both RD and renal disease, then you have two risk factors for osteoporosis and should have a bone density scan.
I wish that they would stop doing RF - it doesn't contribute much to the diagnosis, as it can be negative and you still have RD, or positive and you don't have RD. All that tells you is that you are more likely to develop it - sometime.
I'm getting to that way of thinking too, RF is not that helpful - I'm negative the last time it was done so all the problems I have must be something else? [ joke! If a poor one... ]
I am aware of the connection as I'd recently been researching kidney failure on behalf of my late f-i-l who'd had a nasty fall, though I must state his was related to his long standing heart disease/meds & he was nearly 86. I think what you've probably been told you have is renal osteodystrophy (literally a sort of bone 'wastage'), caused by the kidneys not working as well as they could be & messing up your phosphate & calcium levels, resulting in the bone problem. I'm now continuing reading up on the same issues because my h has just had his first consultation with an endocrinologist & having first set of fasting bloods on Monday morning & another in 3 months prior to seeing the specialist again.
I'm somewhat bemused why your Rheumys not noted your urea & creatinine levels from normal rheumatoid blood test results (or even ordered creatine kinase levels, though that's less likely). Surely if your Rheumy was aware of you being under a Renal Consultant (& he should have been) he would have talked to you about the connection or at least ordered a DEXA scan before now despite your age. I was 48 when had my first one because of being diagnosed with OA at the same time as RD so it's not beyond the bounds you could have one! Anyway, I'm borderline for osteoporosis (presently I have osteopenia though it's borderline for osteoporosis), I take daily AdCal-D3 & have a DEXA scan every two years. I don't take a bisphosphonate as the two oral ones I've been prescribed I've not tolerated & waiting for someone to ok me having infusions.
I think what you've probably been told you have is renal osteodystrophy (literally a sort of bone 'wastage'), caused by the kidneys not working as well as they could be & messing up your phosphate & calcium levels, resulting in the bone problem. Rather than me whittering on about it maybe you'll find this download as easy to understand as I did google.co.uk/url?sa=t&sourc...
The DEXA scan is a simple enough scan, your weight & height is taken before you lie down to be scanned & the scan itself is a wrong way round C shape & just goes over a specific area or the whole body. It's not enclosed if you're bothered by CT scans & it's not noisy like an MRI.
I hope some of this helps & once the results of the DEXA scan & bloods are back you'll be on the way to being properly treated.
Thank you so much for this information, your spot on, I've ask for a copy of the letter sent to the GP I. Got a glimpse of it when I picked up the prescription earlier in the week and I'm sure it said Renal osteodystrophy cause by secondary hyperparathyroid, so my kidneys are not processing Vit-D, got doctors on the 1st so hopefully there will be no question getting a scan.
Had my hand injection yesterday, and doctor confirmed that I had 3 risk factors for osteoporosis RD, Kidneys and Parathyroid.
Been taking Vit-D for about 18months that the GP provided but the new one this week has already help reduce the amount of pain that I'm in, even been out in the garden this morning helping clear up the leave, did strap my hand, I'm sure I will pay for it tonight😝😝😝
No probs at all, just sharing my latest reading! It's always helpful to ask to be copied in on any reports to your GP I find. I hope your injection eases your CT symptoms, I went straight to op but it might have helped if I'd have had a steroid injection whilst waiting because I couldn't get on with the splints, they were all wrong for me somehow.
I'm pleased your new prescription is helping with pain, I've been clearing leaves this morning....again!! Meant to say before, I love your pic, what's his name? x
Rufus, everyone said chocolate Labrador are a little nuts, but he's an absolute sweetheart, but not much help with leaf 🍃 clearing.
The injection really work for me, but not allowed anymore so surgery once this one wears off but last one lasted 10 to 11 months, so fingers crossed this one is as good.
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