Kidney Patient Guide

Hi All, my GP has requested a scan as they have no base value to go on in the future and he was a little surprised my transplant unit had not arranged?

Have TX patients had this done post TX/pre TX? He has also reduced the dose of Lanzoprazole as this can cause bone damage with long term use.

Nope, not had it done - I'll ask at the next clinic appointment.

Yea, in about 2001,my GP noted that i had been on prednisolone for 20 years and asked if i'd had a bone scan.

In the preceding three or four years i had broken, my ribs (each side), elbow and little finger.

The TX unit had never suggested one, which in hindsight was clearly a mistake.

I had one done and had lost a lot of bone density, i had to start taking Fosamax and attending the rheumatology clinic.

As of about 2008, my bone density had recovered to about normal for my age and so i stopped taking the Fosamax. As of last year, i stopped going to the clinic, but i will ask to have another bone scan in a couple of years.

However, it does appear that 34 years on corticosteroids still has an impact. I broke my metatarsal in Jan and it seems it was just walking around that did it.

I suspect it is important to get it done, trust me, broken bones are no fun!

Best of luck.

Chris

Are many post transplant patients on long term steroid use or does that differ from person to person and clinic to clinic?

DeanH wrote:Are many post transplant patients on long term steroid use or does that differ from person to person and clinic to clinic?

I think it all depends on the transplant unit and their prefered protocol. I am at Sheffield and they use 5mg steroid as the minimum dose/maintainance dose and I understand they will keep me on this for transplant life.

I had one arranged by my neph, though it was my initiative to ask for it. The results weren't dreadful considering I'd been on steroids for 20-plus years.

I've since come off steroids due to changing units. The hope is that my bone density has improved since.

DeanH wrote:Are many post transplant patients on long term steroid use or does that differ from person to person and clinic to clinic?

Hammersmith run a steroid-free protocol, but I'm on them anyway because I had rejection early on and steroids seem to do the business.

Hi,

Are many people on steroid free protocols?
I am pre transplant (on dialysis) but really interested in finding out more about steroid free therapy (I would like to avoid them, as I have seen the side effects in friends post transplant) but obviously wouldn't refuse them if it was less effective or unsafe. So far I have only found complex research papers on the subject (!)

I had a kidney and pancreas transplant March last year and my steroids were tapered down from 20mg per day to 0 (as of 1 month ago) which I must say I am happy about due to later in life possible side effects, but I also realise that depending on results going forward that there is always a chance of going back onto the 1mg per day as I have been on previously.

Hi

I had a TX in early 2009 (St Georges) and have never been on steroids. I have had bone density scans ca. every three years - so two so far. My results were at the low end of normal. Mentally I delete the 'at the low end' and translate this to 'results were normal'.

This seems to be the same protocol down in Cornwall where I now live, as at my last clinic a few days ago it I was booked in for another one.

I did discuss what would happen if the results were too low and my GP talked to me about alendronic acid, which he said I could only take for a total of five years in any case. His advice was to keep it in my locker for when it was really needed. I think this meant wait until things started unexpectedly snapping.

I was put on a steroid free therapy after a glucose tolerance test during work-up. I am certainly glad not to have taken steroids, though I have no idea of the risks either way.


regards

Thank you, that's really good to know, I thought if you started on steroids that was kind of it and you were on them for the life of the kidney. Do you think there is much choice if your unit uses them as standard? I suppose I will just need to ask next time I go to a clinic....

Re bone density scans, I have never had one. I have been on dialysis for two years and had renal failure (slowly) for ten year before that......

Soobee,

Steroids were the anti-rejection drug of choice, along with azathiaprine, way back in the mists of time.

Once you've been on them many years, and have a well working kidney, it seems best not to change.

Theses days there appears to be a much wider, and better, selection of drugs to prevent rejection.

C

I have an appointment through for my scan at the MRI outpatients of a local hospital on 19th April, but I am limited driving due to knee surgery so it will be a treck getting to the appointment via public transport.

A really detailed 5 page questionaire to complete and return.

Chris Wright wrote:Yea, in about 2001,my GP noted that i had been on prednisolone for 20 years and asked if i'd had a bone scan.

In the preceding three or four years i had broken, my ribs (each side), elbow and little finger.

The TX unit had never suggested one, which in hindsight was clearly a mistake.

I had one done and had lost a lot of bone density, i had to start taking Fosamax and attending the rheumatology clinic.

As of about 2008, my bone density had recovered to about normal for my age and so i stopped taking the Fosamax. As of last year, i stopped going to the clinic, but i will ask to have another bone scan in a couple of years.

However, it does appear that 34 years on corticosteroids still has an impact. I broke my metatarsal in Jan and it seems it was just walking around that did it.

I suspect it is important to get it done, trust me, broken bones are no fun!

Best of luck.

Chris

Wow. I'm sorry to hear that.
The protocol currently in use by my nephrologists includes a DEXA bone scan within 1 year of cure with prednisolone. I got mine according to it about 1 and a half month ago (after about 10-11 months of treatment), and it did show bone density loss despite the fact that I've been taking 400mg of calcium and 54 micrograms of D-vitamin every day

I'm currently taking 70 mg Alendronate once a week to improve bone density.

So my results have come back and my bone density is not what it should be, in the grand scheme of things it puts me at greater risk in my age range 35/40.

Have some bloods to do and allow my consultant to mess with my vit D, look at my PHT levels etc. It's gone past the point of supplements so will await the return tests and see what the next step is.