Post Transplant Osteoporosis

[SooMK]

Anyone have experience with post-transplant osteoporosis? What treatment are you on, if any? My chances of getting osteoporosis, even without kidney issues, were high since I'm small framed and fair. I'm three years post transplant and had a bone scan two years ago (I've had others through the years, I'm 68 yo). My doc said I was one point away from the osteoporosis dx two years ago and I just had another one and evidently I went over to the other side. I find it frustrating because I exercise every day--a yoga practice and a half hour walking on the treadmill. I guess it just isn't enough. I've just added the elliptical but that's going to take me awhile to get some decent time on. I have zero desire to overdo it and hurt myself, so slow and easy is what I'm all about. My diet is vegetarian and pretty healthy. My neph has had me on 50,000 mg of Vitamin D every month for several years. My gyn doc asked me why that's all he had me on which I had no idea why and completely forgot about asking him the next time I went in to the clinic (in my next life I'm going to live on a planet where doctors talk to each other). I need to go in and discuss the options with my gyn doc but then I need to run that by my neph and see what he thinks. Thanks.

[KarenInWA]

I was recently diagnosed with osteoporosis at age 42/43. I am 5 years post-tx. I have been getting DEXA scans for years now. I started seeing an endocrinologist back in November, and after my insurance company tossed the claim amongst themselves for a while, I received my Prolia shot on Jan 12th. I go back in July for my next one. According to my DEXA scan, i have the bones of a 58-60 year old woman.

KarenInWA

[Xplantdad]

My daughter who was just transplanted at Mayo here in AZ, had numerous bone scans (They monitor very closely) while on dialysis. Since the transplant, she's already had another one. Her bone density is improving. The did say that they will be doing the test once a year for the first 5 years and if it gets too low they will put her on vitamin D (like SooMk)

[nursey66]

My husband was RX with Fosamax, only takes it once a week and it is really cheap.

[lainiepop]

I am on vitamin d but have never had a bone scan?! I am 35 and almost 5yrs post tx. They weaned me off steroids after 6 months if that makes a difference?

[SooMK]

Thanks all. I am not on steroids. It sounds like most of the treatments for osteoporosis aren't causing issues in transplant patients which is good news. I was hoping to avoid adding another medication but I'll see what the docs have to say and go from there and try to work harder on my exercising regimen.

[SooMK]

I have been continuing my osteoporosis research and stumbled upon the relationship between high PTH and osteoporosis. My PTH dropped after my transplant but has been going up ever since. It was at 115 in April. I'm going to ask my neph about it when I see him in October as he has never mentioned it. I just noticed it as being flagged in my lab results. Only the yearly transplant labs test my PTH. Also in my research the consensus seems to be that exercise, while it does lots of great things, is not going to solve the osteoporosis issue. I'm thinking if the contributing issue is a high PTH that should be explored before starting on any of the usual osteoporosis treatments. Since there appears to be a possible PTH angle an endocrinologist might be a better specialist to see, rather than my gyn doc. Prolia was what she recommended but I was nervous about taking it, mainly because if there are side effects there's the up to six months of waiting for the drug to wear off, rather than just stop taking a pill. I'm mulling all this over but will probably just wait until I see my neph and see what he says.

Lainiepop (sorry this is a late response to your post), AFAIK they do a baseline DEXA scan at 50, so you would have to grab their attention for some other reason to get one and I hope that doesn't happen.

[iolaire]

I have been continuing my osteoporosis research and stumbled upon the relationship between high PTH and osteoporosis. My PTH dropped after my transplant but has been going up ever since. It was at 115 in April. I'm going to ask my neph about it when I see him in October as he has never mentioned it. I just noticed it as being flagged in my lab results. Only the yearly transplant labs test my PTH. Also in my research the consensus seems to be that exercise, while it does lots of great things, is not going to solve the osteoporosis issue. I'm thinking if the contributing issue is a high PTH that should be explored before starting on any of the usual osteoporosis treatments. Since there appears to be a possible PTH angle an endocrinologist might be a better specialist to see, rather than my gyn doc. Prolia was what she recommended but I was nervous about taking it, mainly because if there are side effects there's the up to six months of waiting for the drug to wear off, rather than just stop taking a pill. I'm mulling all this over but will probably just wait until I see my neph and see what he says.

Lainiepop (sorry this is a late response to your post), AFAIK they do a baseline DEXA scan at 50, so you would have to grab their attention for some other reason to get one and I hope that doesn't happen.

I'm 1.5 months post transplant and they sent me to an endocrinologist who ordered some tests including PTH. I've not talked to the endocrinologist but did talk to the clinic folks who said PTH and calcium was high but I didn't get the levels and they put me back on sensapar.

So my recommendation is see the endocrinologist or talk to the transplant clinic.

I am on vitamin d but have never had a bone scan?! I am 35 and almost 5yrs post tx. They weaned me off steroids after 6 months if that makes a difference?

Lainiepop the endocrinologist also ordered a dexa scan to get a baseline.  That's also because years ago I was on high prednisone.   

[SooMK]

Thanks Iolaire. I'll see what the clinic has to say next month.

[KarenInWA]

I have been getting DEXA scans for years due to CKD/ESRD. I went on dialysis in 2011 at age 37, and if I remember right, I had had 1 or 2 before then. I am now one week away from turning 44 and am seeing an endocrinologist for osteoporosis tx, which currently is the Prolia shot. I had my 2nd dose of it in July.

KarenInWA

[SooMK]

I'm thinking an endocrinologist might have more expertise than my gyn because of the whole PTH angle although the recommendations might be the same. Karen, have you had any side effects from the Prolia that you've noticed?