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Original poster

I've just been told I've got Osteopoenia

36 replies

CountessDracula · 17/10/2003 19:52

Went for a bone density scan the other week as I have been on steroids a lot for my Crohn's disease. I had a letter from my GP today and have just managed to speak to her, apparantly I have Osteopoenia which is apparantly like mild Osteoporosis and I have to go in to the surgery and talk to someone about it.

I am naturally scared as I am only 36 and don't want to end up snapping all over the place.

Anyone got any experience of this, of the treatments or exercise regime, what I can do to improve it?
Many thanks

OP posts:
ks · 17/10/2003 20:00

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tamum · 17/10/2003 20:09

No experience myself, but my mother has osteoporosis that has been exacerbated by the steroids she's on for temporal arteritis. She has physio exercises, and lots of calcium/vitamin D. The other thing is, particularly at your age, try to maintain a healthy weight, i.e. not too thin. I realise this may be hard with Crohn's. Sorry about it, you poor thing.

Davros · 17/10/2003 20:46

HI CD, you don't sound too freaked but I'm sure you must be quite upset. I'm very sorry to hear about it.
you may remember that I've also been on steroids for some time too (magic but not brilliant side effects). I have Scleroderma and I'm 43 I have yearly bone density scans which I assume is what you were doing. I was prescribed Fosamax at one time but stopped taking it before pregnancy as a calcified baby is not a good idea! I don't have any sign yet of a problem so the Dr I saw recently, post pregnancy, couldn't see any reason I should go back on Fosamax. Have they suggested anything like Fosamax? I've still got some boxes upstairs so could have a look at the leaflet if you want info over the weekend. You know what its like, depends on which Dr you see at any given time and their experience When I'm sitting in the OP clinic I often see posters and leaflets about osteoporosis and how diet and exercise affects it greatly. I'm sure you could get info from whatever hospital dept you visit or I think there's a support group. Let me know if you want me to look at the Fosamax leaflets.
Enjoy your weekend - HUGS
(my first cyberhugs, always thought they were naff until now)

Original poster
CountessDracula · 17/10/2003 21:42

Thanks Davros, they are very gratefully recieved! What is scleroderma? Thanks ks and tamum too.
Fortunately I do have a good weight mainly due to the steroids. My Crohn's had been pretty much under control for 5 years ie no steroids until i got pregnant with dd, then my crohn's flared and I was on them for 18 months

I had not had a bone density scan for 10 years, but when I did it was fine. They sent me for one because of the 18 months on steroids.

The thing that is really worrying me is that if I get pg again as I am trying to, and have to spend another 18 months on steroids, will that have and adverse effect. I can't afford to wait as am 37 on monday so need to get on with it. I don't just want to have one child (though it obv wouldn't be the end of the world, at least I am blessed with one)

It's so difficult as I nearly died having dd with a huge post partum haemmorage, have just had lots of investigations and meetings with profs at C&W to decide that yes I can go for it and now this
Am feeling very down. Dh is being a marvel as usual, I just seem to have one medical nightmare after another and I am usually a very upbeat person. This has kind of floored me but I only heard tonight so will prob be feeling better by the morning

Sorry to rant.

OP posts:
robinw · 18/10/2003 04:49

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WSM · 18/10/2003 09:42

Oh CD poor you, sympathy coming your way. No experience, best of luck.

aloha · 18/10/2003 09:50

Using weights at the gym is a very good way of rebuilding bone density. Start a calcium/vitamin D/zinc/magnesium supplement today - Osteocare is a good one (recommended by a specialist to me) and you can get it from Boots. You can very safely and with benefit take this through a pregnancy too. Walk as much as you can or even run if you can. You can rebuild bone even at your advanced age (joke - you are younger than me!). Discuss the options for hard drugs ( ) with your specialist but there seems plenty of time after a pregnancy to use those - this is early days with osteoporosis and it's great that they have flagged this up while you can still do things about it. I don't have osteoporosis but have written about it several times.

aloha · 18/10/2003 09:53

BTW free weights are more effective than the weight machines. The more you stress bone the more it rebuilds. Good luck!

pie · 18/10/2003 09:53

No experience here either but just wanted to say that I hope you get some good advice and treatment CD

pie xxx

Original poster
CountessDracula · 18/10/2003 12:35

Thanks everyone. Feeling a bit more positive this morning, had a pint of milk at breakfast and just been for a 2hr walk with the dog.

I have some free weights so will start using those more and walking more, also have a skipping rope so will try that as is also good cv exercise which I could do with too!

Have decided that this is a good excuse to get fitter and start eating more healthily. So maybe I will get some benefit from it.

Will go and see the gp for advice next week.

can almost manage a now!

OP posts:
forestfly · 18/10/2003 12:52

Sorry CD, it all sounds very stressfull. No advice just a wish that everything works out for you.

bossykate · 18/10/2003 17:39

ditto, cd, doesn't sound much fun, hope everything works out.

Davros · 18/10/2003 18:44

CD, some similarites then with the steroids and implications of pregnancy. My illness emerged just after I had my first baby which is the reason for an 8 year gap Many people assumed we'd decided not to have any more as our son is autistic but it was due to my health. Scleroderma is a connective tissue disease and immune system disorder. I don't really understand it but it attacks your lungs and, er, connective tissues. Anyway, this is YOUR thread. Having been on steroids (prednisone) for a few years I was put onto a combo with Asathioprine which is a steroid sparing agent and therefore suppsed to have less side effects, maybe this is something you could explore? After a couple more years the illness stabilised so I asked about having another baby - now I know you've probably seen good people but I STRONGLY recommend you try to see Prof Michael DeSwiet who works at Queen Charlotte's and UCH. I saw him on the NHS but he does do private too. My Prof at The Royal Brompton referred me there and the Drs I see at The Royal Free (Rheumatology) were all impressed and asked me what he's like, so I guessed that he must be well known and respected. He was wonderful, deals with pregnancies with potential difficulty, e.g. mothers with diabetes etc, multiple births with problems, in-utero heart problems etc. He wanted me to stay on my low dose of Pred (now only 4mg/day but was 50mg/day at one time!) and 50mg of azathioprine as they wanted stability for the pregnancy. They may take me off the steroids now that I've had time to stabilise after the birth. I was told there were no problems with taking steroids throught pregnancy, my problem was the low oxygen. They also didn't want to tinker with my medication as my body was going to be going through a lot but I had a lot of monitoring, extra scans etc. Couldn't have asked for better care although the food at UCH was foul What do you think? You need a straight answer about your medication, and of course your illness, and becoming pregnant. DOn't wait until you are 43 like me if you can avoid it, but still worth it of course. Let me know if any of my experience can be of help to you and good luck!

robinw · 19/10/2003 07:10

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Original poster
CountessDracula · 19/10/2003 20:05

RobinW thank you I will have a look at that book, it sounds perfect.

Davros, I have been on Azathioprine 150mg per day for the past 8 years. It has stopped me getting such frequent attacks of Crohn's and needing too many steroids, however when I was pregnant it didn't seem to be effective (though I stayed on it thoroughout my pregnancy).

I did know that being pg puts you at risk of bone thinning, and I drank about 4 pints of milk a day while I was. However as soon as I gave birth I stopped which was silly.

OP posts:
Davros · 19/10/2003 21:20

CD, don't have any more info or advice. The milk and exercise sounds like a good idea but you must be most concerned with the issue of another pregnancy. You say you're already trying to get pregnant so I just hope it happens and everything is OK

motherinferior · 19/10/2003 21:36

Oh, CD, massive hugs. xxxxxxx

Original poster
CountessDracula · 19/10/2003 23:19

Thanks MI and Davros - I am actually putting the getting preg on hold until I've seen the doc. I don't want to risk making things worse until I know for sure how bad it is and what the risks are if I get pg and have to endure another 18 months of steroids

Poo

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robinw · 20/10/2003 06:24

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Original poster
CountessDracula · 21/10/2003 10:16

Oh no I've just thought, will I still be able to ski

OP posts:
robinw · 21/10/2003 12:42

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Original poster
CountessDracula · 21/10/2003 13:15

No, but I go most years (though not last year). I do already have an annual policy but will have to admit this when I come to renew. Oh bum bum bum.

It is weight bearing, but I am more concerned about breaking bones. Have appt with the doc this pm so will find out how bad or otherwise it is.

OP posts:
fio2 · 21/10/2003 13:32

Sorry to hear this CD, hope you are feeling a bit more postive after all the good advice you have been given. My sister was long-term on steroids and did have thinning of the bones. She had to change her diet, exercise more and take some special tablets-maybe what Davros has mentioned. When she was scanned only a few months later there had already been an improvement. Try not to worry - easier said than done, I know.

Original poster
CountessDracula · 21/10/2003 16:11

Thanks fio2, that's very encouraging.

Am going to the doc in an hour and starting to feel very nervous about it Hope I don't snivel and make a right tit of myself

OP posts:
Blu · 21/10/2003 16:22

Ooooh, keeping my fingers crossed for you, this all sounds very hard. Just remember that the GP used the word 'mild'.
You always sound so upbeat, a babe with fabulous attitude and spirit, I would never have guessed you struggled with something as difficult as Crohns. Get down to the docs with your fangs to the fore, Countess.
Hoping for the very best....