DEXA scan and AA dilema

I take my calcium in the form of plant based tablets...these

also have vita k2 and vita D.  I know there is no point in telling

you which one but I get them from Amazon.  $36 for l80 tabs.

I've read articles that too much calcium can do some really

nasty things to you.I have strange dexa-scans.  I've had

a borderline reading in my spine for years (I'm 78) but the hips

come out better than the test subject.  Unfortunately I've been

on pred for about 2 and 1/2 years and last dexa did have

osteoporosis but again the hips ratings are great.  My Primary

said I'll never break a hip but put me on AA for the spine.

Hello Faye, yes too much calcium is as bad as not enough. The results of my last bloods indicated my calcium levels were too high so I was advised to lay off it for awhile. Regards, tina

Hi Anhaga  Thank you for taking the trouble to reply to my posting, I have sent a rquest to the site moderator asking how a private message can be sent, hopefully I will get back to you with this information soon. Thank you again Mrs MAC UK

Perhaps you've set your account to block private messages?

I think that could be it. To send a PM all you do is click on the envelope underneath the avatar box of the person you want to privately communicate with and I see that Mrs Mac doesn't have one. Regards, tina

Yes, thank you Anhaga, I have now ticked the box to enable private messaging. Oh dear, so much for us oldies (no, rephrase that 'young ones' ) to learn about computors.  Mrs MAC UK a young 74 year old.

Hi Mrs Mac, um! Still no envelope under your avatar? Regards, tina

Hi tina-uk cwall  So sorry, I failed to tick the correct box, have tried once again, fingers crossed this time, Thank you Mrs MAC

Hi Anhaga, Actually you're not quite correct in what you say. The safety and efficacy of Forsteo has been carefully studied. As a condition for it's approval for use by the FDA, one of the stipulations was that there must be a Post Marketing Surveillance of any association between Teriparatide use and Osteosarcoma (OS). So -  an independent  15-year surveillance study began in the US ( and further research started in Denmark).  Between 2004 and 2011 they reported that 1448 people were identified with OS.  None of these had a prior history of Forsteo treatment. The conclusion of the researchere was as follows: " Thus apx. half way through this 15 year study, the study has not detected a pattern incicative of a causal association teriparatide and OS in humans". 

The explanation for this may lie in the differences between rat and human skeletons and bone metabolism. Simply put, the rat skeleton grows for the duration of their lves, whereas the human skeleton predominantly grows in childhood and continues up to age 21. . . Finallly the rats were give doses of 3 to 58 times the dose given to humans, and given for their entire lives - whereas human dose (a fraction of that in the studied rats) is given for a 2-year window in theirs.

Kind regards, J

 

Forgot to give the reference for the above. Sorry.

J Bone Miner.Res. 2012 (12): 2429-37/

Andrews, Gilsenan et al.

 

Okay Juno.  I was looking at what I believe is an authentic site and the warning was in a large box!  Nevertheless I'm not interested in this drug.

Fair enough but it's just that I'd hate anyone reading the above to become unnecessarily worried . . .   J

I guess some people have a lot more courage than I do.  The only reason I'm taking pred is because of the risk to eyesight if PMR is left unchecked. Now that I know what I have I would rather have put up with the pain until the disease burnt itself out than face the uncertain future of the bad effects of pred. 

Lord, I just couldn't have put up with the pain of PMR and gratefully embraced Pred.,have been reducing it very gradually ever since and now am at 3.0.  . .  No courage there!  Maybe coming from a medical background (not a doctor) and having worked in a hospital for over 35 years, I look at things a bit differently than if, for example, I ran an organic food and health supplement shop !!   Room for both world-views perhaps??     J

I guess you are right, I certainly appreciate being able to move, but as I'm still at 8 I have so far to go, already been diagnosed with osteoporosis, at risk of diabetes, suffering from blurred vision, and actually quite nervous about what the next few months will bring.

Anhaga, you must stop worrying so. You must accept whatever your current situation is and if you can lessen the impact of your current situation then do. 

Osteoporosis- establish a regular weight bearing exercise regime. Simple walking is by far the best for that. Keep your calcium, magnesium and vit d levels topped up and for the possible diabetes risk- try to reduce your carb intake and again keeping fit not being over weight will help there.

we can only do what we can to lessen the impact of preds side effects and remember at the same time that if it wasn't for the preds most of us simply would not have a life because we couldn't move and the pain would be too great, plus just imagine the amount of internal damage uncontrolled inflamation can cause, so instead of being nervous about your future with pred look at it by thinking about how great a future you will have because you are taking it. Easier said than done I know, but thinking positively will help, I know because I've had very negative thoughts in the past too. Regards, tina

I think you are absolutely right Juno - a background in medical science or whatever sort makes a big difference as to how we look at the risks of any drug. Or activity or lack of it...

 

Anhaga - You have to remember that there is some degree of risk in everything - including the food you put in your mouth and even the air that you breathe. The warnings in the data sheet include every single thing that was noted during a clinical trial - and it doesn't always mean that it was due to the medication, but it happened. The rare ones may appear in 1 in 100,000 people - it doesn't happen in 99,999. If you look at it that way round it is a whole different story. 

Yes pred may lead to osteoporosis, weight gain and a risk of Type 2 diabetes and mood swings for example. However, as Tina says, without pred you lead a very restricted life with very little exercise and constant pain. One of the biggest risk factors for osteoporosis is lack of exercise. It also contributes to weight gain, which in turn is a risk factor for Type 2 diabetes, as is also the lack of exercise. The constant pain and lifestyle limitation are risk factors for developing depression - and creating a situation where you indulge in comfort eating, often carbs, all of which contribute to weight gain. Uncontrolled inflammation also does ongoing damage to your body - leading to an increased risk for cardiovascular disease which is compounded by the lack exercise, excess weight and possibly diabetes. It isn't a simple case of taking pred causes x, y and z so don't take it - PMR can also cause x, y and z. 

I know most of this, not only from the medical science background but also from bitter personal experience. So, as I've posted many times, pred is not all bad. It is bad to stick at higher doses for a long time without good reason. But lower doses, below about 10mg, are not horrendous, even when required for a long time. It would be far worse if, like my granddaughter, we'd had to take high doses of pred in our teens while our skeleton was still growing. But if she didn't take it it wouldn't be a question - because she would have died in the resus room from an asthma attack. 

Many of the sites with the scare stories are like the media: "eating bacon will kill you", "cure for diabetes in 2 years" - you know the sort of headlines. As Juno said, often the studies are in animals - usually rats or mice, who are never perfect models for the situation in humans, since there is such an emotive response to using primates which are the closest to humans. In addition, the amounts of the substance under study given are enormous. The great cyclamate risk scare was based on quantities of the sweetener where a human would have to drink about 70 bottles of diluting juice for their entire life to accumulate the amount of the stuff that caused the problem. A journalist - or health food manufacturer - finds such a press release and takes the dramatic fact out of context. Because you will always find comments in the conclusion with "may", "possibly" and "more and larger studies are required" .

In the current climate some people wonder whether they should go shopping, to a concert, on holiday - when in fact the risk is very small that something devastating will happen to them. It is the same with many of these risks - some are common, some happen in 1 in 100,000. If the truly nasty ones appeared amongst the common effects, the ones that happen to 1 in 10 or even 100 patients, then the drug would almost certainly have been abandoned at a fairly early stage of clinical trials and not been approved for general release. 

Yes, there are nasty things associated with pred - but the risks aren't as high as some people would have you believe.

Eileen, thank you.  It's just that I feel my native good health is being eroded by the pred.  It disturbs me to walk into a dark room and my eyes no longer adjust instantly; I'm hungry most of the time because nothing seems to satisfy like a big bowl of cereal; I expend so much effort trying to keep my body strong I've little energy for anything else.  With PMR we are caught in a cleft stick, one branch the unpleasant disease, the other the unpleasant treatment.  I'm tired out.

Tina, I am so tired out from all my efforts to maintain my health.  I've been doing everything, and more, and it still isn't enough and there is no energy left for anything else.  I am so tired I fall asleep just before the criminal is unmasked on my favourite tv show, for example.  My daily walks leave little inclination to do the damned vacuuming.  I'm supposed to be getting my overseas Christmas cards ready but I'd rather sit here and chat to my fellow-sufferers....

I hear you Anhaga, I just listed all my complaints...then deleted them, but I agree with you.  Some days we feel defeated.  But in reading your post, I want you to feel better which in turn gave me a bit of a lift...strange how that happens... Guess that psycology stuff.  Here...big hug...

I totally agree.....until this PMR hit me about 2 and a half years

ago I was doing okay for 76 yo.....now I'm tired all the time

I don't have much energy for life period.  Just keeping my head

above water with house.   Son and Hubby help out but I so

hate sitting around feeling l ike I can't make it to the mailbox.

Some back issues keep me from much exercising.  Can you

tell I'm having a bad day?

I've felt so tired that yesterday and today I broke down and ate holiday pie!!! I said to hell with it... The sugar rush was so nice, I actually felt like doing things...sure hope it doesn't bite me in the rump later!! 

This isn't specifically for Faye - I just want it to appear here - if you see what I mean - it is as much for Anhaga and anyone else who feels pred is the enemy rather than the PMR. I'm not asking anyone for sympathy or pity, I want you to see what pred means to me - and a lot of others. 

I was 51 when PMR first started. I've never been one for housework so not being able to do that wasn't too much of a trial  but I usually went to the gym every day, did classes rather than the machines (which I detest with a passion) and was making friends in a new place and I was trying to lose weight.  We had recently bought a flat here in Italy - to spend holidays at during the winter to ski. I was intending spending quite a bit of the winter here and David would fly out to join me. I worked freelance so it didn't matter where I was as long as I had internet. We sang in the church choir.

I couldn't DO the classes, nor could I guarantee my voice would come out on the right note because I had a permanent sore throat and I was SO tired, all the time even without doing anything. I would sit down with a cup of tea in the conservatory in the afternoon - and go to sleep. I struggled out of bed at 9am and was back in bed by 9pm. I couldn't concentrate and I couldn't do anything even remotely energetic.  I had 5 years of that - noone could work out what it was, all my blood tests were normal - before the whateveritwas flared to a stage where I couldn't get out of bed. I came here to the flat and used the internet to find out what I had. That was in early March - by early May when I came back to the UK I had my answer: PMR. It still took until the July to be allowed to try pred - for 6 weeks only and with very bad grace on the part of the rheumy. Luckily a GP agreed with me and the response I had to pred - in 6 hours I could walk down the stairs properly and walk back up them, not on hands and knees as I'd been doing for months.

I'm now just 63, for the last 2 years I have finally felt normal. After just over 6 years I'm still on pred, now down to 5mg. My weight is still above what it was when PMR struck - but I've lost all the pred weight and some of the weight I put on with PMR because I couldn't exercise. I now live in the flat we bought with so many hopes of skiing a lot of the winter - though I doubt I'll go out on the slopes again, I'm not fit enough to keep up with the neighbours and skiing on your own palls after a while. Had I known what I know now I would have been much better much sooner but I had a major flare and other problems 3+ years ago, partly due to problems with Medrol and an antibiotic. It took me 18 months to get back to a decent place. But at no time did I really want to stop the pred because I knew I would hurt even more without it.

I "lost" a lot of my 50s because of PMR without pred. If you think that pred is taking away your life then try 5 years of untreated PMR. I suspect you would end up realising that, actually, pred isn't that bad. 

If you use all your energy fighting the pred, fighting things that you aren't going to be able to change at the moment, you will have nothing left for yourself. Beating yourself to a frazzle will leave you exhausted: " I expend so much effort trying to keep my body strong I've little energy for anything else" and you will have no enjoyment in anything. It is hard to have to accept that you are a few years older than you thought you were (because that's what it amounts to) - there are ways of circumventing the problems you have but you are so fearful of them that you are missing the point. You can't see the wood for the trees.

The medications to help your bones improve are really NOT as bad as you seem to believe. You have been looking at sites that are totally against them and they are biased, often they have an agenda to sell THEIR products so they take the most scary thing they can find - and headline it. Forsteo in particular is actually a natural substance, one the body makes itself in the form of parathyroid hormone to build bone. The monoclonal antibodies can have some unpleasant side effects - but they are used for RA and save people's lives. Denosumab is one of those - and the people I know who have been on it have had great success in reversing their osteoporosis and with no problems at all - one nearly 80 year old lady is back riding her bicycle and playing tennis! I also don't support the use of drugs when it isn't needed - hence my advice to demand a dexascan so you can make an informed decision to delay taking them- but if it is needed I would be first in line to take advantage of what modern medical science has to offer. 

Do have a rethink - a couple of years of one of those drugs will almost certainly sort out your bone problems, In the meantime the PMR may have gone away, although no-one can promise, but you won't be flogging yourself to death with weight bearing exercise carrying a heavy jacket that is tiring your PMR-weakened muscles. It isn't surprising you feel so tired, you are ignoring every bit of advice we give about pacing and resting. Advice that has been distilled from many patient-years of experience with PMR and pred, not just made up because we're a lazy bunch who want to do less!

I've responded to you in a post that says it is directed at Faye - it isn't, it is something all of us have to remember.

Eileen,  powerful and insightful stuff.  Thanks,  J

Hi Anhaga, I don't mean to sound trite but I had a great laugh at your description of you 'nodding off ' just before the criminal was about to be unmasked on your favourite show!  I think we've all experienced that one!!  

Finally, what's wrong with chatting to your fellow-sufferers??   I can guarantee you that in a few months you won't be feeling the way you do now.  In the meantime, what you need is what you need . . . 

Kind thoughts,  J

Anhaga, I do hope you have read and digested Eileen's post below because she has managed to capture the realities of pmr and preds. Brilliant Eileen, never a truer word spoken. I just want to add that when I was first diagnosed (52) and for much of the following months whilst on preds I was mentally in a very bad place, then when I had a flare I really was low and really couldn't see that there was an end to all of this bloody, bloody pmr and preds. 

I would often wake up and cry, go to bed and cry. I felt anxious, lonely and very afraid for my future. I really hadn't excepted this condition.

Then one day I woke up and like a bolt from the blue I just said to myself, you know what I am so tired of being scared, I am so tired of thinking morbidly about my life and my future, and most of all I was so tired of crying. From that moment I accepted pmr and preds. I am very lucky in that I have a husband who keeps my feet well and truly on the ground- he's a Yorkshire man!!! I also have a great GP and rheumatologist.

i hope anhaga, you will experience this "moment" too, and soon, because only when you accept pmr and all it entails will you start to live again.

like you I've fallen asleep half way through my favourite programme, but that's ok, the television is full of repeats! Vacuuming! What's that?! And as for my overseas Christmas cards, I'm writing one each day and I know I'll have them all done by last post for air mail.

as Juno has said what's wrong with chatting with all your fellow sufferers?! We are very lucky, 10 years back I doubt there was anywhere for any of us to share our experiences and I bet many of these patients felt very, very alone. Well, you and I and all of us are not alone, we help each other, we inspire each other, we laugh together and yes sometimes we cry together. You are definately not alone. Regards, tina

Tina, thank you.  I AM trying - really really hard.  It is discouraging when every few days another brick is thrown at me, just when I think I've got a handle on things.  It would help if I had more support.  I've been trying a different tactic with hubby.  Instead of remarking when something isn't done that we don't have a maid, I am now saying that I was waiting for the manservant to do it.  It hasn't had much effect, but it makes me feel more secure in relinquishing responsibility. 

Anhaga, your comment re your husband only goes to show just how much we need each other because quite simply non sufferers do not understand or comprehend what we go through and why should they, there are many other medical conditions that I don't understand and I never want to. Keep smiling. Regards, tina

If I waited for my husband to do anything in the house I'd be dead! On the other hand - he is prepared to pay for a cleaning woman or to go out for a meal. But that only happened after I ended up in hospital for 3 weeks and had a couple of very interesting nights! He was s%*& scared. 

My effort isn't good enough? You want it done? You do it - or find someone to do it...

Eileen, tell me about it. When I broke my heel and was temporary unable to get this and that and do this and that Bob one day asked me if a wanted a cup of tea. That would be lovely I replied. He then said that I was taking the p... Out of him because he'd already made me a cup earlier in the week!! Men we can't live with them and we can't live without them! Regards, tina

Still laughiing . . . . !    T

Thelma, he then said that I was very lucky having him and I'd have to look far and wide to find someone else so accommodating and with such a good nature. I laughed so much my ribs hurt the next day! Hope you are well, tina

Mine's an academic with a mother who told me off for not standing at the door with his slippers and the paper when he came home at teh weekend when he was writing his PhD thesis. Why, I asked. He'd been working she said. So i asked her what she thought I had done Mon-Fri 9-5, what cooking every night was and just what she thought operating the washing machine (not an automatic, a twintub) and vacuum cleaner counted as. 

That was 40 years ago. I haven't changed a lot   

Well done you! I do believe that our husbands mothers have a lot to answer for! Regards, tina

Hi Eileen,  Thanks.  I really do appreciate your encouragement and reassurance. I don't think I am "fighting" the pred, although it may have sounded that way.  But I am not a happy camper with the side effects that are coming on.  These seem to be a bit serious and maybe they are permanent and I'm worried.  When I tried to get advice from my GP about diabetes she just shrugged and said that diabetics could eat carbohydrates.   Again, I was the one who asked for my blood sugar to be tested, and it is higher than it should be.  I figured osteoporosis was enough to be getting on with.  Now it might be diabetes as well.  I only hope my eye doctor doesn't find anything.  I'm seeing him in January after one year instead of waiting until my next regular checkup which would be 2017.  With regard to the osteoporosis medications there is absolutely nothing anyone can say that will convince me they are worth the risk.  Especially as we know there are proven methods of improving bone density that don't require anything more than proper nutrition and exercise.  I'm well educated enough to be able to read the internet and books with a critical eye and I'm not being bamboozled by snake oil salesmen!  I'm happy wearing a weighted vest part of the time, learning new exercises from my physiotherapist, and finding the right foods.  That seem to me at any rate to be more sensible and healthier than taking pills with their uncertain effects!  One reason I thought a weighted vest might be really beneficial is because I weight 15 lb less than I have most of the past 20 years, and think it's a good idea to stress the bones by replacing that weight this way.  It's going to be a very long time before I can carry 15 lb in the vest, if ever!   Sorry, I have been going on a bit.  

Thank you again.

I was in labour with my first baby and hubby informed me he thought he was coming down with a sinus attack.  Did I care?

Thanks for the "pep talk"  I surely will feel better tomorrow.

I don't like being on pred because I already have cataracts

that will need to be taken care of the first of the year from taking

pred and have gone over to osteoporosis from being borderline

for years. I'm on AA and don't worry too much about that.   I just can't be upbeat and positive everyday.  The "rotated pelvis" is an

everday thing with pain in lower back and numb legs and feet.

I'm 78 and would like to get back to a  sort of  normal life before I go to

take the big dirt nap......

 

Thank you.  I needed a hug.  Not a scolding.  I don't do things right because i do too much....

I seem to probably be the only person on the forums who would welcome cataracts - and there is no sign of them at all! If I had cataracts I would be able to have them removed and get rid of distance specs and just have to wear reading ones!!!!!!!!!!

Now me - I'd try Bowen for that rotated pelvis. 

I had a mate in the north of England who had a horrible neck problem that caused her permanent pain and it couldn't be sorted out (4 child-sized neck vertebrae). We agreed on one thing: when you're dead you are no longer in pain! Not all bad...

Well said, Eileen. I'm enjoying the quality of life I now have. I could not have continued the way I was prior to diagnosis. Pacing is the answer. I am out and about now meeting friends. Yesterday I laughed so much with a friend I was sore but in all the right places!😄😄 We were still laughing when she dropped me off. Guess what? She, too, has PMR. Nobody would have guessed if they had seen us. There are areas of my house and garden which are neglected but I won't be lying on my deathbed thinking I wish I'd dusted more. When my daughter was a teenager I would go in to her room and almost every inch of her carpet was covered. She said it was because she didn't like the colour of the carpet. She chose a new colour scheme and we had it all decorated etc. Before too long it was the same scenario. I gave up and handed her fresh bedding and asked her to bring me her laundry. I said as long as the environmental health were not required then I could live with it if she could.😳 I had my revenge when she bought her first flat. I left my cups and plates behind her sofa! I think if we put our mind to it we can find ways to adjust. I enjoy gardening but aside from it being winter I can't do what I used to. I have time to smell the roses which are in need of some TLC. They are, of course, not in bloom at the moment. I rest more but it means I can do what I feel is most important  and prioritise accordingly. Life is short but it can be good and if it takes medication to allow this then perhaps we just have to accept it and not fight it too much. This is from somebody who has always been reluctant to take any!

Anhaga, I have never had children but years ago we were at the hospital for whatever, when a lady in labour was making rather a lot of noise. Bob enquired what was wrong and was told that she was in labour and in great pain. Pointing to his arm He replied that she needed to break her elbow, then she'd know what real pain was!!! Oh, the embarrassment, thank god they understood his sense of humour. Regards, tina

Oh Man....wish I could give you my cataracts....as to hubby..

he's good at helping if I give him very specific directions.  He's

definitely not a self starter.  Sometimes I could do it myself

faster than explaining.....I know that if I look around I can

find many people worse off than I am but sometimes we just need

to feel a little bit sorry for ourselves....it doesn't last..

Couldn't have put it better. 

Mine struggles even with the very specific directions - and no, I can't be bothered either. Sometimes faster doing it yourself? No, every time in this household! He CAN iron his shirts but it takes about 10 mins per shirt. I just leave the room...

I never had a broken elbow but everytime a doctor asked me to rate

my pain I always put childbirth as #1.....Hard to believe there is anything

worse than that.....sciatica ran a close #2.......but that's just me....

I'm great Tina and, hearing from you and Eileen, I'm beginning to think I've been blessed with a ' little treasure' !  He goes off to his studio in the city each day and paints. He makes his own dinner (I'm a veggie and make my own) except on Sundays and he's obsessively tidy and will clean anything - toilets, kitchen etc. The only problem is that he's a complete hypochondriac and has had every complaint I've had over the years,(pregnancy excepted) only MUCH  worse, will exagerate his symptoms when with friends to the point of embarassment and becomes really cross if I call him on it. . . . And, funnily enough, he'll say that women are always whining about something! Never dull in our house!!   T

Thelma, so are you saying that if he had pmr it would be much, much worse than yours! Men. Regards, tina

'fraid so Tina. I used to get comments like "if you had MY back, you'd know what real pain is"  . . . Then, when the Pred. kicked in, the comments would run something like this " " you're SO lucky that you get relief with that stuff,  I only have Voltarol - and it doesn't even work properly !!  

Maybe he's got PMR...

Mine gets back twinges (always his own fault for trying to lift something at a totally stupid angle) - it's a 3 act drama!

With my 63-year old wisdom, I now just enjoy the show ( with a very straight face, of course!).