Osteoporosis

tillytop

Hello peeps

Just need to "vent" so please bear with me.

Yesterday, out of the blue, I had a letter from the rheumatologist telling me that my recent bone density scan shows that I now have osteoporosis of the spine and he is referring me to another specialist. I hadn't realised that it was only two and a half years since I had my last bone density scan and, although I had low bone density then, I was told at the time that, although the figures were lower than they would like, they weren't overly concerned. But the letter I received yesterday mentioned the results of the previous scan and seemed to suggest that things were worse then than I was told. Either way, it seems that this deterioration has been quite rapid thanks to my inactivity, the oral steroids and my apparent (benign) pituitary tumour.

I am both cross and hugely upset about this latest diagnosis and I am struggling to get my head round it. Haven't stopped thinking about since I got the letter yesterday.

I know that there are other forum members with osteoporosis and any feedback about if/how it can be managed would be much appreciated.

Thanks all.

Tilly xxx

coco67

cant advice on the osteo stuff tilly but im sorry you have even more to deal with, hugs xx

stickywicket

Tilly, I'm so sorry. Yet another thing to deal with and, in view of the last reading, it must have come as a shock.

I'm sorry, I've no experience of osteoporosis other than my mother's when she was in her 80s. I know exercise, especially swimming, is good and diet is important, otherwise zilch.

Being of a suspicious mind, I do wonder if the fact that they now seem to be emphasising the previous 'low' result much more than they did at the time is suggestive of 'revised thinking' ie covering of backs. In my ignorance of all things osteoporotic(?) I'd have thought 2 and half years was quite a while to go between tests given a low(ish) count, a contributary pituitary tumour and not very helpful meds.

Of course you are upset. Who wouldn't be? Do not apologise. That's what we're here for, Tilly, as well you know since you are always here for the rest of us. I feel sad and angry for you.

dreamdaisy

Ye gods. Oh my poor, poor tillytop, what a blow and what a shock, no wonder you are rocked back onto your heels. I am so sorry, I cannot think of anything to say to help, there is nothing I can do but I am thinking of you, very very much. DD

traluvie

Hi Tilly..

Sorry to hear of your recent news..
My mother had osteopsoris she took to help her bones so they were'nt so weak..
I take tablets too at the moment as i am at risk of it .. I believe it means your bones are not as strong as they should be , resulting in easier fractures and breaks, which is why they often prescribe meds to help make bones stronger..I think lol.. as far as i am aware my mom has had no serious problems, and i don't really know what i am supposed to be looking out for, i'm just doing as doctor ordered lol..
Hope all goes well, might mean another tablet to take with the rest of your cocktail of meds
When are you due to see doctor again?..x

frogmorton

Oh Tillytop

I am so sorry about this news...well actaully a bit cross to see that 'they' had warning before and hope when you go to see someone about it you take Mr Tillytop with you and that he 'sorts them out for you' :evil

Jes suis tres en colere contre les medicins :x

There are treatments though aren't there? Things like calium and vit D??? then we move on to stuff like dare l say it....alendronic acid :roll:

Oh Tilly huge hugs for you

Love

Toni xx

tillytop

Thanks Coco, Sticky, DD, Tracy and Frogmorton for your replies.

I don't feel I deserve anyone's sympathy. I have to bear a good portion of the responsibility for the new "pickle" in which I find myself because I have taken anti-osteoporosis drugs only sproradically in the past and, over the years, several docs have said I should be taking HRT to protect my bones but for a number of complicated health reasons which I won't bore you with now, I declined to do so. That said, when I had my last scan, in 2009, because I was told that the hip bone density had improved and that, although the spine density was lower than they would like, it hadn't deteriorated further since the scan before, I thought things were "ok" and that it was something I didn't need to worry about immediately. But then I didn't give them the full picture about the other risk factors and, to be honest, really couldn't deal with anything else at that time. So although I was aware of the potential risks, I had told myself that when the other health issues were clearer, I would tackle it then. This latest scan only happened because, when I went for my Rituximab infusion, the doc I saw was concerned that I wasn't taking Alendronic Acid or the like to mitigate the risks from the pred. I then asked if it would be appropriate to have a bone density scan and he said he would ask, although he thought they might decline on the basis of my age (44). Really glad they didn't. A few weeks ago my GP prescribed Alendronic Acid, at my request, but when the scan appt came through quickly, I thought I would wait to see if I actually needed to take it. Guess I know now that I do.

Anyhoo, thanks all for your replies. Much appreciated.

Love Tilly xxx

magenta

Hi Tilly,

I'm sorry to hear this and I'm sorry I can't help you with the osteoporosis. My father-in-law has it, he was the one who told his dr he had it and asked for an xray. He takes a tablet that he has to take standing up!!! Can't remember the name.

I would have thought a yearly bone scan should have been done and your bloods checked.Is a bone scan mega expensive?

Take care,
Magenta x

I've just looked up alendronic acid-that must be the tablet my FIL takes xx

tjt6768

I'm so sorry that I almost missed this hun.. Also sorry that you've had this news, I sincerely hope that you are alright, this is a big blow hun.. Please use us fellow arthurites as support as much as you can, we are all here for you.....

hileena111

Hi Tilly
I'm sorry I nearly missed this as well......I had a bone density scan two and a half to 3 years ago as well and it came back as osteopenia {not osteoporosis} but bones wern't as good as they should be. They wrote to my THEN GP who said....Nurses.....why couldnt the doctor have written to me....he would have told me what he wanted me to do...she just tells me whats wrong......so he decided he would put me on some meds and then a few months later decided I didnt need them....Got a telephone call from my present GP who mentioned about this fractured pelvis???? and said she would like me to go for a bone density scan incase osteopenia had now turned into osteoporosis...about 20 mins later the phone rang again and it was the hospital saying your GP wantd you to come for a bone density scan....can you make it on Wed {no ? about my age } so it might be much the same as happened to you. Sorry I have hi jacked your post but I just wanted to say we are here for you.....dont forget that
TONI......NO YOU CANNOT MENTION ALENDRONIC ACID :x :x :x YOU'RE LUCKY DD IS STILL ON HOILIDAY OR SHE WOULD BE HAVING A GO AT YOU AS WELL!!!!!!!! {said in fun by the way}

tillytop

Thanks Magenta, Tony and Hileena for your replies.

Will reply properly tomorrow.

Love Tilly xxx

suzygirl

Tilly, so sorry to hear this. It must be a shock. Please don';t blame yourself, the risks should have been clearly outlined to you, lets face it, its the last thing you expect at 44!!!

The meds have recently been mentioned to me(39) and I have never asked as I don't fancy yet another med to take, especially as I have heard it is nasty!!

Am thinking of you, I would suggest a good chat with your gp and rheumy to discuss implications and what can be done.

(((hugs)))

tillytop

Thanks Suzy.

From where I am now, I would really urge you to consider the anti-osteoporosis meds if they think you need them and if you feel you can cope with them on top of everything else. I have taken them in the past and the "nasty" bit is that they can irritate your oesophegus (sp?) which is why you have to swallow them with a large glass of water on an empty stomach, and remain standing or sitting upright for half an hour afterwards if I remember rightly. I never had problems with irritation, it was just the inconvenience that got me.

Thinking of you.

Tilly xxx

ironic

Oh Tilly, I am so sorry that you have had such a big setback, such a shock when you see it in writing. Will you be getting an appointment soon to discuss this? I hope that starting the medication soon will have a good impact quickly for you.

Lots of hugs,
Lv, Ix

tillytop

Thanks Ironic.

The rheumatologist is referring me to another consultant apparently and I hope not to have to wait too long cos I really would llike to know what's what. But I have a rheumatology appt in a few weeks time anyway so, if I haven't heard by then, I will follow up when I go.

Thanks again.

Tilly xxx

tiggernut

Hi Tilly, I was told I had osteoperosis. I saw the specialist nurse and I had an infusion of Aclasta in Feb. You only have to have it once a year. I have to go for a blood test in Aug to see how my body absorbed the drug.She did tell me there are other drugs out there but it was decided this would be better for me. There is one that has to be taken an hour before food (breakfast)then you have to remain upright and drink loads of water with it!! I was given that years ago as a preventative but it is such a drag when you have other tablets that also need to be taken before food! She also said there is a new one coming that will probably be out by the time mine is due again which will be better for me as it's an injection twice a year rather than an infusion.
I have really bad veins and it took 5 goes to get a canular in!!
I think it's worth taking the drugs I also take calcuim. I dread breaking a hip!!

Anita.

hileena111

Hi Anita
That sounds hopeful.........Thats the one i was on .....what a pain trying to sort the meds out and also you had to take it wil a full glass of water...In the winter that was horrible.....I sat shivering :eek: until I could eventually have a warm drink......I might mention that if they say I do have osteoporosis

Love
Hileena

barbara12

Tilly
I am sorry Iv only just seen your post, I do hope you get this appointment very soon, the stress of it must be awful.
Heres some hugs to be going on with (((((())))
and I do wish you well with it all, and please let us know how you get on.
Sorry I cant offer any help.
You take care.

tillytop

Belated thanks Anita, Hileena and Barbara for your posts.

Anita I was interested to hear about the Aclasta. Like Hileena I have had the "stay upright for half an hour" drugs in the past and they were a real nuisance. (But maybe if I had continued to take them I wouldn't be in the position I am now, but then hindsight is a wonderful thing...)

Thanks again all.

Tilly xxx

hileena111

Hi
Yes I noticed that post and thought the same thing I havent got this density scan yet but when I do and get the results if i do need go on medication maybe it wontbe as bad as before.....right nuisance that was

Love
Hileena