Renal Bone Disease after Kidney Transplant

[sandwiches]

Has anyone got renal Bone Disease after Kidney Transplant. I have terrible pain in my right hip when I am sitting and walking. My walking is very slow to what it was before. I have an appointment in july to see a doctor at the renal Bone disease clinic. Has anyone had any experience of having the same thing.

[charm81]

Hi sandwiches,

It was quite revealing to read your post. I'm 6 months post transplant and I cannot believe the amount of concern my bones and joints are giving me. I've even got a bone density scan this week after I highlighted my concerns to my Rheumy.

I've experienced clicking in my knees, pulled muscles, overall achy joints which left quite debilitated for 3 weeks. It's difficult as im trying to get my life back on track after almost 4 years on dialysis.

I've been told I've have hypermobility anyway and the thought of stepping up my exercise frightens me. I was in a rounders league but been forced to pull out due to always pulling my muscles, especially in my quad. Ive been advised to do strengthening exercises. Decided to stick with swimming and walking now.

Would be interested to know what your bone disease clinic reveals. All the best x

[sandwiches in reply to charm81]

Hi charm 81.

Thanks for your reply. I have had 2 bone density scans, one last year and one in april this year. I was always saying to my Renal Nurse that my legs are hurting me especially in my right hip, she said that it was my weight and that I should lose some. So I gradually tried to lose weight which was hard but I knew it was something else. The pain in my leg is constant, it is heavier than the left leg and also swollen. I can't stand on it for too long because I get numbness in my leg and also a shooting pain that goes up my leg. I hope it isn't renal Bone Disease because I have enough to cope with with having lupus also. After my appointment I will post on this website what my Doctor said. X

[vonnyrad]

Hello, I have been a renal patient since the age of 21, I'm now 54.I had a transplant in 1987.I have lupus/vasculitis/polyartitis nodosa/ microscopic polyangiitis depending on which doctor I'm seeing, but to me it,s a rose by any other name ...it's what caused my kidney failure anyway.Until a few years ago I had not even heard of renal bone disease, by which I take it you are referring to the effects of a high parathyroid hormone level which happens after long term renal failure, even after a successful transplant, when the parathyroid gland secrete too much of the hormone which controls bone turn-over.This is what has happened to me,and I developed tertiary hyperparathroidism(look it up!!!) I was initially given vit D in the form of Alfacalcidol for a while, then told to stop by one doctor and start again by another- differing opinions, it got a bit confusing and eventually it was stopped altogether.I have long suffered from bone pain, more than just the arthritic joint pain of lupus, throughout my whole body, down the lengths of my bones, sometimes they would feel as if they were broken.This was attributed to renal bone disease but apart from the erratic vit D treatment nothing was done.

Having been on steroids continuously since the age of 21, and at times at a very high dose, I've always been aware of the risk of osteoporosis, but have had regular scans which were always okay until the last few years when I began to show evidence of osteopaenia, pre-curser to osteoporosis.I have never been offered any drugs to prevent or treat osteoporosis such as bisphosphonates, perhaps due to my transplant, not sure.Last year I fell out of bed and broke my collar bone and it was discovered that my bones were now osteoporotic.My renal consultant had already mentioned my high parathroid hormone levels,and said in his opinion the osteoporosis was caused by this and not the steroids. I was attending the metabolic bone clinic at that point, where the consultant wanted me to take a drug called calcitriol, which I did for a while but it seemed to have no effect on me.Meanwhile my renal consultant was pressing me to have surgery to remove one or more of the glands that were now obviously overactive.I had a scan which showed an enlarged gland(adenoma) and it was explained that the surgeon might remove one or more of the glands and then replace a small amount of tissue back in my neck to keep producing a some hormone.As it turned out, I had all four glands removed as they were very enlarged and had to be tested to ensure they were not malignant, so I did not have any tissue replaced. This left me with nothing to control the calcium levels in my blood except tablets.....it has been a nightmare trying to get this right.Since my op at the end of March I have had 3 emergency admissions with both high and low calcium levels,( hyper and hypocalcaemia) the high being the most life-threatening as it was dangerously high,I really I felt so ill!!!I have been attending 2-3 times a week for blood tests and drug adjustments and there seems to be no end in sight.Plus, all the stress on my body of these swinging calcium levels, and probably the op itself thinking about it, triggered the worst flare I have had in a long time, requiring a fortnight in hospital,increased steroids and causing a dramatic fall in kidney function to its worse level in 28 years!I can understand my consultant wanting me to have the op, there was no choice in his mind as he was taking the long term view of the effects of high PTH over the years, as it doesn't just affect the bones, but at the moment I wish I had never had the op, or had some treatment at an earlier stage before removal became the only option.Perhaps there is still time for you to be treated with drugs if you are found to be developing a high PTH level, that is something you could research on-line before you go for your appointment, fair amount of info on renal patients websites on the causes and effects of hyperparathyroidism and also about hypocalcaemia on websites dedicated to those who for varying reasons have had their glands removed and the effects of that.Good luck!

[sandwiches]

Hello Vonnyrad, Thanks for your reply. I have been taking steroids since 1999 when I first was diagnosed with Lupus. I was on a high dose of steroids which was used to try and dampen down the Lupus. They didn't work but they made me ill and I also put on a lot of weight. I went on to diaylsis in 2004 CAPD, then Haemo Diaylsis in 2005 which was very tiring. I was on alfacalcidol whilst I was on Dialysis for 5 years but when I had my Transplant in 2010 I was put on Fultium D3 which i am still taking. My PTH is 176 and I also have Secondary Hyperparathroidism. I don't particularly want any more operations as they make me tired. So I will be asking questions about any treatment for me. My legs are hurting me at the moment, pain is coming from my right hip all the way through my leg to my toes. But I just have to carry on. Thanks for the Good Luck message.