anyone got osteoporosis as well?

evabuk

Sorry I haven't been around for a while...lots of doctor visits and stuff...end result being that because of some blood work showing very low B12 and D levels I got sent for a Dexa scan yesterday...

although I haven't had the results "officially" - see GP next week - they give you a print-out, and even without any medical knowledge it's pretty clear to me that I fall into the osteoporosis camp.

They test 2 parts of the body - lumbar spine, which shows osteopenia (thin, but not yet osteoporosis) and head of femur (thigh bone) where the T-score is -3.0...according to the range shown, anything below -2.5 is osteoporosis.

I have an appointment to see GP next week, to discuss this and another blood test, and he's already started me on a calcium/vit D supplement as well as B12.

Needless to say I'm scared witless...on top of the pain of the arthritis in the spine, now this!

anyone else got the same diagnosis, or being treated for it. I know you can't replace bone that's gone...only do stuff to halt the progression of the disease.

Honestly, I'm ready to go jump off a cliff, I really don'tknow how much more I can take of all this...

sorry for such a long moan, but I desperately need some info and input from anyone who might have some experience.

thanks for reading.

skezier

Hi Eva,

I can't really help you but just wanted to say I am sorry you have this as well and give you a ((( ))) Cris x

wibberley

Hi there,

Sorry to hear you have osteoporosis. I had a scan done recently and it came back borderline - nothing's ever straightforward with me!

I've got to up my calcium - I can't stand milk etc but have found some chocolate flavour chews in Boots, 2 of which provide you with your RDA of calcium. Bit of an odd taste at first but once you get used to them they're not bad...and better than calcium tablets which I find impossible to swallow, even when broken in half!

Not any advice to give I'm afraid. Try not think about it too much until you've had a professional evaluation of the scan.

Lois x

Starburst

I'm sorry you've had this diagnosis, on top of everything else you have to deal with. I have to rush off in a minute and I'm not sure how old you are but you can build bone mass up until your 30s.

((((gentle hug))))
I hope someone else here can offer you some help and advice.

evabuk

thanks,guys, for your sympathetic replies. This really is such a kind community, and your support it always appreciated.

Unfortunately, I am 63, so not much chance of building up bone mass! it's going to be a question of damage limitation, I'm afraid!

annie_mial

Not sure if I can advise, but I had a DEXA scan in July and I have osteoporosis of the spine.

After a lot of toing and froing and everything being done in tandem with GP and Rheumy, I started on Strontium Ranelate 2 months ago. I had a lot of side effects to start with, but over the weeks they gradually diminished and I feel fine again now.
I knew from previous experience that I couldn't take one of the usual bone-building biphosphonates (e.g. Fosamax) so I'm glad that I tried this and persevered with it.
I am also taking Adcal D3, calcium and vit D tabs.

I am being monitored closely for other reasons anyway, and I am due to have another scan in July next year. Just hope it shows some improvement, but Strontium R usually gives good results (apparently!).

Don't be too worried, there is now a lot that can be done.

Annie

dorcas

So sorry to hear about your diagnosis ':(' and the pain you are in.
I don't know anything on the subject of osteoporosis but there's bound to be someone along in a minute who does.

Maybe the helpline could offer you advice or point you in the right direction..websites etc..?

I just wanted you to know that I care.. hope you get some answers soon to your questions. Irisx

annie_mial

Eva, I should have said - I'm 65 and was told that these meds will give more bone mass even at my age.

Annie

hileena111

Hi
Got OA in hips spine neck and ankle......my last dexa scan showed osteopenia {sp?} but no osteoporosis......thats bad enough. I'm 63 by the way.
I'm on adcal {effervescent tabs} and also supposed to be on alendronic acid but keep forgetting. Its one you take once a week...before food, water, drink, medication or anything. Take it with a glass of water and then sit up straight for at least 30 mins. Then you can have a cup of coffee....thank goodness LOL but thats the one I keep forgetting

Love
Hileena

Starburst

evabuk wrote:

thanks,guys, for your sympathetic replies. This really is such a kind community, and your support it always appreciated.

Unfortunately, I am 63, so not much chance of building up bone mass! it's going to be a question of damage limitation, I'm afraid!

I'm sure you'll get told this but vitamin D and calcium supplements are a good idea and I know there are medications they can give.

All the best of luck with everything.
x

englishrose

evabuk wrote:

Sorry I haven't been around for a while...lots of doctor visits and stuff...end result being that because of some blood work showing very low B12 and D levels I got sent for a Dexa scan yesterday...

although I haven't had the results "officially" - see GP next week - they give you a print-out, and even without any medical knowledge it's pretty clear to me that I fall into the osteoporosis camp.

They test 2 parts of the body - lumbar spine, which shows osteopenia (thin, but not yet osteoporosis) and head of femur (thigh bone) where the T-score is -3.0...according to the range shown, anything below -2.5 is osteoporosis.

I have an appointment to see GP next week, to discuss this and another blood test, and he's already started me on a calcium/vit D supplement as well as B12.

Needless to say I'm scared witless...on top of the pain of the arthritis in the spine, now this!

anyone else got the same diagnosis, or being treated for it. I know you can't replace bone that's gone...only do stuff to halt the progression of the disease.

Honestly, I'm ready to go jump off a cliff, I really don'tknow how much more I can take of all this...

sorry for such a long moan, but I desperately need some info and input from anyone who might have some experience.

thanks for reading.

Sorry about your diognosis. I have had RA for about 10 yrs. About 2 yrs ago I had a scan and they said I had osteoporosis. (I am 72)
I have alondronic acid (usually taken once a week) but for other reasons I am give an injection yearly and also take calcichew twice a day. I think once you start treatment it either stops further degeneration or may even improve even at my great age. So just keep taking the pills..............

englishrose

evabuk wrote:

Sorry I haven't been around for a while...lots of doctor visits and stuff...end result being that because of some blood work showing very low B12 and D levels I got sent for a Dexa scan yesterday...

although I haven't had the results "officially" - see GP next week - they give you a print-out, and even without any medical knowledge it's pretty clear to me that I fall into the osteoporosis camp.

They test 2 parts of the body - lumbar spine, which shows osteopenia (thin, but not yet osteoporosis) and head of femur (thigh bone) where the T-score is -3.0...according to the range shown, anything below -2.5 is osteoporosis.

I have an appointment to see GP next week, to discuss this and another blood test, and he's already started me on a calcium/vit D supplement as well as B12.

Needless to say I'm scared witless...on top of the pain of the arthritis in the spine, now this!

anyone else got the same diagnosis, or being treated for it. I know you can't replace bone that's gone...only do stuff to halt the progression of the disease.

Honestly, I'm ready to go jump off a cliff, I really don'tknow how much more I can take of all this...

sorry for such a long moan, but I desperately need some info and input from anyone who might have some experience.

thanks for reading.

carob22

evabuk wrote:

Sorry I haven't been around for a while...lots of doctor visits and stuff...end result being that because of some blood work showing very low B12 and D levels I got sent for a Dexa scan yesterday...

although I haven't had the results "officially" - see GP next week - they give you a print-out, and even without any medical knowledge it's pretty clear to me that I fall into the osteoporosis camp.

They test 2 parts of the body - lumbar spine, which shows osteopenia (thin, but not yet osteoporosis) and head of femur (thigh bone) where the T-score is -3.0...according to the range shown, anything below -2.5 is osteoporosis.

I have an appointment to see GP next week, to discuss this and another blood test, and he's already started me on a calcium/vit D supplement as well as B12.

Needless to say I'm scared witless...on top of the pain of the arthritis in the spine, now this!

anyone else got the same diagnosis, or being treated for it. I know you can't replace bone that's gone...only do stuff to halt the progression of the disease.

Honestly, I'm ready to go jump off a cliff, I really don'tknow how much more I can take of all this...

sorry for such a long moan, but I desperately need some info and input from anyone who might have some experience.

thanks for reading.

Hi - I was diagnosed with osteoporosis after falling and breaking several bones in my hand in 2002. I take Actonel once a week as well as the calcium/vitamin D supplement. I have a DEXA scan every two years - and it has been holding its own despite being on Arimidex for breast cancer for 5 years which is known to adversely affect bone density. I came off the Arimidex in October and my specialist thinks I will increase bone from now on. Apart from being scared of falling and taking great care in that regard (like giving up ice skating!!) it has not affected my life at all. So not to worry unduly!
Love Caro

trisher

Hi

They have not said anything to me.

They put me on Calcium tablets. I have to eat 2 tablets a day.

Trish xx

evabuk

annie_mial wrote:

Not sure if I can advise, but I had a DEXA scan in July and I have osteoporosis of the spine.

After a lot of toing and froing and everything being done in tandem with GP and Rheumy, I started on Strontium Ranelate 2 months ago. I had a lot of side effects to start with, but over the weeks they gradually diminished and I feel fine again now.
I knew from previous experience that I couldn't take one of the usual bone-building biphosphonates (e.g. Fosamax) so I'm glad that I tried this and persevered with it.
I am also taking Adcal D3, calcium and vit D tabs.

I am being monitored closely for other reasons anyway, and I am due to have another scan in July next year. Just hope it shows some improvement, but Strontium R usually gives good results (apparently!).

Don't be too worried, there is now a lot that can be done.

Annie

thanks for your reply, Annie.
I asked for the Strontium R rather than the biphosph. because I'm scared of the digestive side effects...already had a lot of Gi problems this year, and don't want to take the chance.
I'm curious to know what side effects you had when you first started taking the strontium, if you don't mind sharing?

thanks,
Eva

annie_mial

Not at all, Eva.
My first and main problem was exhaustion, complete and utter. It took only three doses to get me like that and for the best part of 10 days I stayed in bed. If I did get out it was only for a couple of hours at most and in that time I actually managed to get dressed once.
That was to go to the doctor's surgery. By the time I got there I could hardly stand up - all I wanted to do was lie down - I fell asleep in the car coming home and it's only a 5 minute drive, I usually walk there.
I did find that I was a little more wakeful late in the evening for some reason.
The other problem that I had was increased muscle pain, but the exhaustion was so complete that for those 10 days I was really only aware of it on waking. That kicked in more as I began to come out of the exhaustion, had to go back to the doctor again and was given more painkillers as a result.
I was signed off for three weeks and at the end of that time, although I could potter round the house I dreaded the thought of going back to work. As it happened I was signed off from Thursday to Thursday so the first week I had to work only the one day, the Friday - I lasted for four hours then came home and slept for 11!
After that little episode, my workplace - who are the most caring bunch I have ever come across - suggested that I simply do as many hours as I could for a couple of weeks, and take it from there.
It's 9 weeks since I started taking it now, and I have been back to 'normal-ish' for about the last three, but I am still feeling much more tired than usual (and I can do that without any help) but it does seem to be improving all the time, both the exhaustion and the additional pain.
I'll be glad to compare notes with you if you would like to - you can always PM me.

Annie

elaine5000

Hi Eva
Sorry to hear you have Osteoporosis. I am 50 have RA and in July was diagnosed with Osteoporosis in my left hip, Osteopaenia in my lumbar spine and today had a spinal x-ray and have OA in the lumbar region.
I take daily doses of Actonel because my stomach can't tollerate the weekly dose or Alendronic Acid. I cannot take calcium tablets so take a liquid calcium and have added calcium rich foods to my diet.
I understand that the Actonel is supposed to harden the bones to reduce the risk of fractures.
Take Care
Elaine

annebr

Hi Eva,

Sorry I can't help with the osteoporosis as I dont have (or know) that I have it. Bit I do have Pernocious Anemia/B12 deficiency.

I get injections (have to go into muscle) every 10 weeks, they are a funny jab as it's a syrup and you can feel it spreading. Going for one on Monday so hopefully should have more energy for Christmas. If you want any more info on this let me know and I will try to help.

I do think there is a link between a lot of conditions if only the speciaists would talk. I have OA and FAI, pernocious anemia and under investigation for an IBD which I know can be linked but I can't find out much more. My eyes have also got worse and I noticed a previous thread and this seems common.

Hope I have made sense.

Anne