National Osteoporosis Society - Osteoporosis Forum / Osteoporosis Forums / Introduce yourself

Newly diagnosed

Ally — Thu, 29 Jul 2010 14:36:11 GMT

I have recently been diagnosed with Osteoporosis in both of my hips. The right hip far worse then the left, but to my dismay I was advised by my GP to go away and try to cope until my pain gets worse then I will be referred for a hip replacement. I was not even given leaflets or an email address. I take 50mg of Diclofenic three times a day but sometimes this only manages to take the edge of my pain and makes me feel spaced out. As a result of this my day to day living and holding down my job is very difficult. I feel so confused!!

Oesteoporosis caused by steroids. Oesteonecrosis of the jaw caused by fosamax.

stephengstewart — Mon, 26 Jul 2010 16:04:46 GMT

Hi i'm stephen aged 40. Have had oesteoporosis since i was 28. This was caused by taking steroids to control ulcerative colitis since i was 21. I was on steroids most of that time and i developed oesteoporosis. The steroids were stopped when i had the operation to cure the colitis. I have been taking fosamax and then alendrondric acid weekly for the last 12 years. I was shocked to find on my last visit to the dentist that they cannot exract teeth because i am on alendronic acid incase i have oesteonecrosis of the jaw. My life has been ruined by taking tablets. I have multiple fractures in my spine and am about 5 inches shorter. Do i have a case for compensation.

Problems with Adcal-D3?

ChrissieM — Thu, 29 Jul 2010 10:03:21 GMT

Hi, I was diagnosed a few weeks ago with osteporosis - borderline I'm told, but primarily in my hips and lower spine. I was put on to two-a-day Adcal-D3 and weekly Fosamax by my GP for a month in the first instance and have recently been back to discuss the medication and renew the prescription. I said I could cope with the Fosamax but wasn't entirely happy with it, But just got a lecture on the results of breaking a hip and wasn't it worth putting up with a once-weekly change in routine to take the Fosamax in order to avoid the problems. To a certain extent I agree, but my main problem is one I have only realised since seeing my doctor, which is I wonder if the discomfort I'm suffering is caused by the Adcal rather than the Fosamax, as it now seems to be there all the time. A sense of heartburn and acid in the gullet.

I just wondered if other folk have this reaction to the Adcal or if it is my imagination!

I also have to take asacol tablets to control colitis, and my doctor assures me that there is no interaction, but I'm not convinced and wish I understood the medical reasons behind all the restrictions with taking the Fosamax.

Side Effects from Osteoporosis Medication

tj50 — Thu, 29 Jul 2010 09:59:31 GMT

Hi, I was diagnosed with Osteoporosis June 2009 aged 49, having been referred by my doctor as there have been concerns that the contraception drug Depo Provera can cause thinning of the bones. I had been on this for 5 years and there was never any mention of this until I'd been on it around 4 years.

Up until this point I would have described myself as pretty fit and healthy, with a fairly good diet and lots of exercise.

My first medication was Alendronic Acid and Adcal, I managed with this for around 6 months and then started to have a constant acidic feeling in my stomach. I stopped for a bit but was persuaded by my doctor to try an alternative and have been using Actonel for the past few months. Everything seemed okay at first however I am now experiencing aches in my elbows, wrists and hands and top of my neck/back which are slowly getting worse! It was first described as tennis elbow and was only in my right arm, however the usual symptoms of tennis elbow have disappeared and I am struggling to believe that's what I now have in both my arms.

It would be great to hear if any one has experienced similar pain, I am becoming more convinced it has something to do with the medication and will be following up with my doctor next week.

At this moment in time I really feel inclined to stop taking any medication if this is how I'm going to be feeling. I'm not due to have another scan until June 2011 as was told I should wait for 2 years from the first scan, my results were -2.8 in my spine, with Osteopenia in my hips, I can't remember the figures!

AlgaeCal 'natural' treatment

susyq — Wed, 06 May 2009 20:53:52 GMT

Hi, just read an interesting article on : http://www.medicalnewstoday.com/articles/82191.php entitled 'AlgaeCal Natural Osteoporisis treatment is a big success' - has anyone ever tried this treatment from America? be interested to know and/or what anyone thinks about the www.betterbones . Are these things worth a try, you never know who you can trust these days!

Thanks for reading,

Sue

New member

Mariannehk — Fri, 09 Jul 2010 03:21:51 GMT

Hi, I am a new member. I have osteoporosis and am 50 years old. I discovered that I had osteopenia a couple of years ago and tried adding extra calcium to my diet and more weight-training exercise. Unfortunately my yearly DEXA scans continued to get a lot worse so this year with a diagnosis of osteoporosis and a high fracture risk of the spine reluctantly had to make a decision to take drugs. I researched as much as I could - I didn't want to take HRT as both my mother and sister have had breast cancer. After reading about Boniva I was unhappy about all the side-effects. I have started taking Strontium Ranelate and so far have taken it for a month, even though it is difficult to take in the evening before bed with the two hour break of calcium-containing food drink etc. I try and have a cut-off time every evening and finish eating by 8:30 pm and then take it at 11 pm. Social eating out makes it more difficult to comply when dinner doesn't finish until 10 pm or later but managing so far. Have heard that some people swop Protos 2g to mornings but understand that this can't absorb as well as I take calcium and Vit D3 supplements during the day. I am interested to hear how other people are getting on with Protos, what side-effects they have experienced and what happens after they have taken it for five years as I can't find much information on how long it is safe to take long-term.

Osteoporosis and Risedronate - ?side effects

CBH — Tue, 15 Jun 2010 21:36:00 GMT

Hi, I am new to writing on forums of any description, but thought I would give it a go. I am Coeliac 12 years diagnosed and have been diagnosed with osteoporosis for a few years, having first had osteopenia, then on second DXA scan, osteoporosis. The doc tried me on the usual bisphosphonate, then put me on Risedronate. I developed aching legs. Two years ago - my dream holiday to Cyprus - I had to have a steroid injection to enjoy it. I gradually got worse and sometimes could hardly get up the stairs at night (I am 56 so not exactly old yet). Then a miracle happened, I forgot to order my tablets. So I went for a week or two without. Then I told the doc I wanted to cut them out completely and see what would happen. I gradually got stronger, was able to line dance again. Last week I did a 5 mile walk for Weston Hospice and have never been so pleased. I raised £160.00. Six months ago I couldn't have walked a mile. The doc now insists I take a different supplement Protelos or Strontium I think it is called. Side effects? watch this space! ......

Cath

New member + can diet & exercise significantly reduce bone density loss

Val — Sun, 11 Jul 2010 22:08:24 GMT

Hi. My name is Val & I've just joined this forum. Hopefully will learn how to navigate the forum to get the most out of it! I have looked at some of postings & replies.

I have been osteopaenic for about 10 years & recently had a bone density scan which has stated that I now have osteoporosis. Spine T score of -3.5 ( decrease in BMD value of 19.3% since 2002) & hip T score of -2.6 (decrease in BMD value of 6.7% since 2002). I have not had any fractures so far or symptoms that I know of. My mother had osteoporosis & not sure how much hereditary factors count.

I have been taking Boots Calcium & Vit D tablets for about a year.

My GP has offered me Alendronic acid. I decided that I wanted to do some research before deciding to take any medication. After having read some of the information GP provided together with other on internet & some of the forum posts, I don't think that I want to take it as so many possible side effects. Strontium Ranelate seems to agree with more people i.e. less side effects experienced. Any further information or comments on this?

I would really like not to take any medication and try to either increase (is this possible)) or at least reduce or stabilise my bone density loss through increasing my calcium intake via food and taking a supplement with Vit D (& magnesium?) and via weight bearing exercise but do not know whether this is possible. Has anyone out there managed to do this? Since as far as I know I am entitled to a bone scan every 2 years (does anyone have them more often?) I wouldn't know the outcome of the above till I had a bone scan I suppose.

I am going to see my GP this Wed to discuss more fully & ask lots of questions which she may or may not be able to answer. In the meanwhile, I wanted to have some input from members of this forum.

I look forward to hearing from you.

Zoledronate infussion (aclasta)

Mo — Sun, 15 Nov 2009 15:42:59 GMT

I have been advised by my GP and consultant at the hospital that I require Zoledronate given once a year by infusion. I have researched the drug company, Novartis who supply this drug and am really quite scared of the side effects. Has anyone out there had this treatment and if so what were their side effects. Any information would be more than grateful. Thanks Mo.

criteria for treatment of osteoporosis

cg — Mon, 12 Jul 2010 20:24:56 GMT

Having taken my mother to see the specialist today, we have been told she does not fit the criteria for Forsteo although she has 2 breaks in her spine. She is now waiting to have the Aclasta infusion. Can anyone help me with more information? Thanks

alendronic acid

msalter — Sun, 20 Sep 2009 15:19:48 GMT

I have been given alendronic acid, one tablet a week plus adcal-D3 daily for build up my bones after being diagnosed with osteoporosis. I have also been diagnosed with possible RSD. After reading about the alendronic acid and side effects I don't feel I want to take this medication but will join a gym and do weight bearing exercises and lots of walking. Have anybody had bad side effects from alendronic acid and do anybody suffer from RSD as well?

Monica

New member

wisteria — Tue, 06 Jul 2010 18:43:50 GMT

Hi everyone, I'm interested in reading all your comments, surprised how many face the same problems. I recently had a private health screen and they found I had a low bone density result,now on Adcal, my GP tried to get me an appointment for a Dexa Scan on NHS but said they would only do one privately, due to cutbacks, so I am awaiting a private scan, been quoted £190.

Excessive Exercise and Osteoporosis

BeccaH — Sun, 11 Jul 2010 11:31:44 GMT

Hi All,

I wondered if anyone could give me any advice on excessive exercise and osteoporosis please? I have not had a period for 18 months now, and after visiting the doctor she suggested that I cut down on my exercise. Most days I exercise for about 2 hours, cycling two and from work (12 miles each way), and sometimes an additional 3 mile run or 2 mile dog walk. My bodyweight is normal (just under 10 stone and I am 5 foot 6 inches). 18 months ago, I came the pill and at the same time increased my exercise to the current level, so it is difficult to know whether the absence of periods is being caused my body adapting to coming off the pill (after 10 years), or the exercise, or combination of both.

When I started exercising my weight did drop to 8 stone 12 pounds for a few months, but it is back up to just under 10 stone now. I initially started exercising to lose a little weight, but now I really do enjoy it, and dont really want to cut down. However, I am worried that the absence of periods may lead to osteoporosis, so obviously if it is the exercise causing this, I will have to cut down. Does anyone have any experience of this or advice on what level of exercise would be considered excessive?

To confuse things further I have also had advice from different doctors telling me the exercise isnt the problem, and it's normal for your body to take a while to adjust to having natural periods without the pill. My husband and I would like to start a family in the next few years, so I really want to sort this now. Also Im not sure if I need a bone density scan yet? Any help or advice would be really appreciated, as this is starting to worry me now. Thank you.

Effects of HRT

Deborah — Thu, 08 Jul 2010 17:21:50 GMT

I am trying to get some feedback in order to help my mother. My mother is 75 and she has been on HRT for 27 years until February this year when she has stopped taking it. She has recently had 2 months of severe headaches which we are trying to find out the cause. After a CT scan and MRI it seems she has over the past 4 years had a few minor strokes she wasn't aware of - we thought they were something else at the time. She has been very healthy and active on the whole. But this isn't the cause of the pain this time. The doctors and consultants are at a loss, but my mother consistently says when asked about the pain that it feels like it's in the bones, ie the skull bone. Her head is also tender to touch and the pain moves to different parts.

Do you think osteoporosis could be happening in the skull bone - is this possible? And could this be the withdrawal symptoms from a long period of HRT intake?

Any feedback would be helpful for us the decide what the next steps are.

Thank you

Deborah

The National Osteoporosis Society Research Programme

Claire Bowring — Mon, 30 Nov 2009 14:24:49 GMT

We launched our first research strategy in 2006 which set out the broad focus for our research from June 2006 to December 2009. The strategy focused our research effort on maximising the benefit to people with osteoporosis and communicating the outcomes to those who support the Charity. The key principles guiding the Charity’s research agenda are scientific excellence and relevance to people with, or at risk of, osteoporosis.

We have reviewed the research strategy, with input from our scientific advisors and updated it for 2010 -2014. The general direction of the Charity’s research agenda has not changed. The current review has updated the existing strategy, streamlined ideas, incorporated the research pillar of the Charity’s strategic plan and developed some new initiatives and approaches. The research strategy will be supported by a separate research priorities document, which is not part of this consultation.

We would value your thoughts on this new strategy and are inviting comment from the public, health professionals and scientists.

You can download the consultation documents from www.nos.org.uk/research

If you have any questions about the consultation process or the research grants programme please contact us at research@nos.org.uk.

Hello - I'm a new member

Faraway2 — Tue, 29 Jun 2010 14:18:27 GMT

Hi - I'm now 54 and was diagnosed with osteoporosis 3 years ago which was a huge shock as I've always eaten well, taken exercise etc. My overall T score was -3.9 with a reading of -4.2 and -4.3 in two places in my spine. I started taking Fosamax and calcium and am awaiting a new Dexa Scan. However, I keep reading on the internet that the drugs we are taking are dangerous in that they build bone density but long term create brittle bones. Obviously this is a concern because although porous my bones are strong at the moment. The article I'm referring to suggests supplements instead of drugs, i.e. less calcium and lots more magnesium, plus lots more related vitamins and minerals. Can anyone confirm whether this is the way to go? I have tried taking various doses of Magnesium but find it gives me stomach pains and the runs!

Osteoarthritis

patricia — Mon, 05 Jul 2010 10:42:26 GMT

I am 67yrs and have arthritis bad in my hands and neck I dont seem to get much help with it I take aledronic acid pregabalin and calium chews, my arthritis is getting worse I have not had a scan for over 2yrs are we supposed to ask for one or do they send for you if someone could help I be grateful many thanks patricia.

[edited]

Songster — Fri, 02 Jul 2010 15:54:14 GMT

[edited]

Have you found the forum helpful?

James — Thu, 24 Jun 2010 10:39:17 GMT

Hello everyone,

We'd like to talk to you if you've found the forum useful or helpful. If you've found support, advice, or help on the forum, and feel it is an important part of the website for you personally, then please let me know by replying to this topic or sending me a private message / email. It would be really useful for us and we'd very much appreciate it as we continue to look for ways to improve the website in general.

Thank you!

James

Severe osteoporosis & raging at this horrible problem

LW — Thu, 01 Apr 2010 14:03:41 GMT

Seems there is no simple answer to sort osteoporosis. My pelvic bones give me poor mobility & am due for a second dexa later this year. Alendronic acid causes gastric problems & for this last year I've not had the courage to mention this to the G/P. The calcium tabs are chewable OK. What caused this in the first place is a mystery. No mention in "pedigree" department. Nutrition excellent & longish walks with two large dogs so weightbearing exercise++. Any advice would be great.:) LW

Alendronic Acid and Calcium

Adventuress — Sat, 26 Jun 2010 06:50:22 GMT

Hello I am Josie and I am a new member.

This week I received a standard letter from my GP informing me that the one a week Risedronate 35mg that I have been prescribed and been taking for over 2 years is being changed to Alendronic acid (70mg). I assume this letter have gone to all my GP's patients who were on Risedronate.
It's probably to do with cost but does anyone have any thoughts on this like whether it's a good or bad thing.

Also my GP has left it to me to buy my own calcium tablets over the counter and I have been taking Boots Calcium with Vitamins D & K (800mg) daily. Does anyone have any advise on this as I am unsure if I am buying the best one.

New member - Raloxifene and riding

SueS — Sat, 05 Sep 2009 11:12:54 GMT

I was diagnosed with borderline osteoporosis 4 years ago, aged 58 and adopted a dietary and wait and see approach - my GPs weren't keen to prescribe any medication. I had another scan 2 years later which showed that my bones had got worse, and I have been on Raloxifene since then. Is anyone else on this? Does it work? I'm wondering whether to ask for another scan to see if it is doing any good.

I have always been thin and light and am now very thin probably because I'm suffering from anxiety and and a poor immune system resulting in lots of minor bugs - colds, tummy upsets, fluey symptons etc - which are seriously restricting my life. I've recently started seeing a psychotherapist to help with past problems and current stresses etc. I was hoping to start help exercising ponies on one of the west country moors but I read in the recent News that jogging and jumping were a bad idea. I feel the fresh air and exercise and contact with animals would be good for me but don't want to make my bones worse. Does anyone else with osteoporosis ride? My first grandchild is due in November and I'm really hoping that I can get myself fit enough to be a proper granny.

If anyone has any comments I'd be really grateful.

Sue

posts and where to look for any responses?

Newfield — Sun, 09 May 2010 16:02:27 GMT

Hi there,Being a relatively new user...I am still learning the way around this site. Thought it may be useful to let others know..eg: yesterday I did a post...it now appears under the about osteoporosis section. However, if I did not know where it is/was, I may have missed it.
Suppose the moral of the tale is that whenever you decide to review recent posts..it is best to look in the individual forums as well as looking at the right hand side where "new" posts are visible...
Hope that helps...?

Can high doses of Calcium cause joint pain?

Heather — Mon, 28 Jun 2010 09:24:19 GMT

Hi Having just been diagnosed with Osteoporosis a few months ago, I am taking AdCal only. I was prescribed Actonel but have been afraid to take it, as I have reflux and scaring of the esophagus. My problem is that out of the blue, I have developed pain in my knees and elbows. I have felt really down about this, as exercise is very important for Osteoporosis. I thought it might be Osteoarthritis but recently read that high doses of calcium can cause joint pain, has anyone else experienced this? It would explain the onset of something I have never experienced before.

Newbie intro

Wulf — Sun, 27 Jun 2010 16:11:44 GMT

Hi. I've just found this site after being told about it by the Arthritis Care Help Team.:)

I've had Rheumatoid Arthritis for roughly 15 years, the aftermath of a broken back, Osteoporosis as a result of the RA, and have recently been diagnosed with Osteo Arthritis. I don't know much about Osteoporosis, but I am aware that I am in the minority of sufferers as I'm male. I have a question, though. Is it possible that the Osteoporosis can cause pain across the pelvis? I have this, but can't attribute it to either the RA or the OA. Just throwing this out there!!:ermm:

Wulf.

Osteoarthritis

Dee Jay — Wed, 10 Mar 2010 16:51:04 GMT

I am taking Strontium Renelate and Adcal tablets for osteoporosis of the spine, but have been suffering bad pain in my left foot for about 8 months. It has been x rayed and there is nothing broken, and GP hinted that it could be osteoartritis. Is there anyone out there who has experienced this, and do they know of any medication I can take, that will not interfere with my present drugs.

Side effects of Alendronic acid and Adcal-D3

Kath — Mon, 02 Nov 2009 14:42:01 GMT

I was prescibed daily Adcal-D3 and weekly alendronic acid about six weeks ago. After a month or so I became very constipated, so much so that I had to have two visits from the District Nurse in one afternoon to releive the intense pain. I was then prescribed Movicol, two powders a day, which works more or less. It seems completely wrong to me that I have to depend on daily laxatives, necessitated be the other prescriptions. Is this "normal" or is there an alternative? Kath

Newbie to the site and to Osteoporosis !

nickyv33 — Tue, 22 Jun 2010 20:23:09 GMT

Hi there,

My hame is Nicky, I have just been diagnised with Osteoporosis of the spine, I also have Fibromyalgia which drives me crazy all the time, I am pre-menopausal and am very confused about my diagnosis it was quite a bad scan result for my age, can anyone advise me what I should be doing and what things to avoid as I have not been given any advice....

I was taking Alendronic acid but it had a very severe reaction on my stomach, but am still on Adcal-D3

Thanks

Nic x

Newbie

IEL — Fri, 18 Jun 2010 08:03:32 GMT

Hello
My name is Iris and have just been diagnosed with osteoporosis (I think). Having read your posts I see there is a condition before actually having osteoporosis I am going to see my doctor next week and get some more information. I have been given medication but having read posts on your forum I am worried about taking it.

I have celiac disease which means I already have problems with my gastric system and I don't think that the acid tablet will do me any good . I also have epilepsy and have been on anti convulsants for over 40 years which I have read on your site can contribute to osteoporosis.

I am 57 and it is my spine which is affected, I have had sciatica for several years and now I know why.

Iris

Searching the forum

Tim Edmonds — Tue, 08 Jun 2010 11:56:25 GMT

Having received Osteoporosis News this morning I saw the piece about the forum on page 5 and want to reply to Vicky Monk's question. However, I can't find the topic which contains this question, nor can I find a member called "Vicky Monk". Help and advice appreciated before I give up.

Introducing Myself

ChristineW — Sat, 17 Apr 2010 14:18:06 GMT

My name is Christine and I was diagnosed with osteoporosis almost three years ago after a simple fracture of my wrist. I started off on Alendronic Acid and after 5 tablets had to stop because of side effects which led to investigation to rule out other things. I started back on them a few months later but again, had to stop. I then switched to Actonel but have now been advised to stop these too until severe jaw pain is investigated. I'm worried about osteonecrosis of the jaw and next month I have an appointment to see a maxillo-facial specialist. I was also prescribed Calcichew which I do take but not 1000 mg a day which I think is too much and I'm not entirely sure it agrees with me.

I would be interested to know if anyone else has experienced jaw pain and what the outcome was? My dentist has taken x-rays and says my teeth are fine although there is a shadow showing on the lower jaw and she doesn't know what it is. I still get the pain even although I haven't taken any bisphosphonates for a few months.

I'm afraid I get totally confused with all the conflicting reports about bisphosphonates and find it frustrating. I feel I should be taking something but on the other hand do I just carry on walking and Scottish country dancing and hope for the best? I have a walking companion who was diagnosed 10 years ago and takes nothing due to side effects and a recent scan showed very little deterioration in that length of time.

I'd love to hear any comments. Thanks. :)

Intro from Anastasia

Anastasia — Fri, 04 Jun 2010 17:42:25 GMT

Hello everyone,
I'm 44 and come from Cambridgeshire, UK, where I live with my partner and three children. I look after my disabled son and I'm a part-time student with the Open University.

I've had a bone disease for about 18 months (since diagnosis) called osteomalacia. It's the adult form of rickets - for some reason, I haven't been absorbing vitamin D properly. I'm now under an endocrinologist who is investigating my case and maybe in a while we'll find out what is happening (I'm told that whatever the problem is, it's almost certainly rare, since I have none of the risk factors for bone disease). I am told it is highly likely I have osteoporosis too, although hopefully confined to my feet where I have nerve damage (Complex Regional Pain Syndrome). My condition has meant I am in chronic pain and I struggle to walk, although I'm now out of the wheelchair largely and able to walk short distances with a walker. As well as bone problem, I have nerve damage and muscle wasting.

I've been on vitamin D (calcitriol) for over a year now, but haven't been able to absorb it, so my endo has given me massive doses of ergocalciferol vitamin D, by injection. I don't want to talk too soon, but I'm starting to feel better than I've felt for ages, and I'm finally able to walk a little without pain, so maybe it's working. I've just had my calcium checked again (let's hope it's gone up) and my doctor's been looking at some bone enzymes, presumably to see if the vitamin D is working at long last.

Fortunately, I haven't had any major falls since becoming ill, although recently I did dislocate some toes because the ligaments in my feet are now so loose (another side-effect of vitamin D deficiency, I presume). I'm under a fantastic podiatrist who has really helped get me back on my feet (literally) and has provided me with bespoke orthotics that help keep my damaged feet straight and more able to hold me up. I don't generally walk without a stick, or walker, and I am very nervous of doing so, even when I'm having a good day and my pain isn't so bad. I feel very nervous and unsteady on my feet, and very afraid of falling. I'm hoping to come across other people who relate to how I feel, and perhaps younger people who know that bone disease isn't just about age. I'm fairly confident using walkers and mobility scooters etc. in my home town, but elsewhere I feel very self-conscious, and it's difficult to explain that you have a bone disease in your 40s. To be honest, a lot of people simply don't believe me.

Juvent 1000 machine

wordsworth — Mon, 30 Nov 2009 08:05:32 GMT

Has anyone tried the Juvent 1000 machine (dynamic motion therapy ) to build bone density,or has anyone researched it at all ? I'd be really grateful for any information.

It has E C certification for use in preventing and treating osteoporosis, looks like a set of bathroom scales and you stand on it for 20 mins a day.

thanks

wordsworth

Bisphosphonates and CoQ10

JC — Wed, 26 May 2010 09:30:17 GMT

For those of us that are taking (or have taken in the past) bisphosphonates, I thought this article was interesting on the possible deficiency of CoQ10.

http://saveourbones.com/yet-another-good-reason-to-avoid-osteoporosis-drugs/

I took some CoQ10 supplement last night since reading this article and I must say I do feel more energetic this morning (even though I stopped taking bisphosphonates over a year ago).

Has anybody else tried this?

osteoporosis and emphysema

Dorothy — Tue, 18 May 2010 12:39:28 GMT

Hi, I am new to this site, found it by accident and I am hoping for some advice. I have both of the above illnesses and wonder if there is anyone else on here that does to. I also don't have a very sympathetic GP, so tend not to go and visit him as I know he will say "we all have our troubles and have to just put up with them". I had to wait over 2 years before he would refer me for a bone scan as he didn't feel it was necessary, this showed a score of -3.5. I usually end up buying over the counter painkillers to help me get through the day. With the emphysema I get very breathless now and have a variety of inhalers.

If anyone, like me, has both of these, how do you cope, and what advice can you give?

Thank you,

Dorothy:):laugh:

New to Forum not new to Osteoporosis!

boneme — Fri, 14 May 2010 12:01:55 GMT

Hello :)

I have just rejoined NOS as a member, yesterday I received for the first time in writing!! a copy of my bone scan (doctor would be livid if he knew!) which showed that I do have osteoporosis and my spine and left hip are quite badly affected. It was quite scary reading and I have emailed the nurses with specific questions which I hope they will reassure me with. My GP was very scathing when I asked for a scan to see how I was doing, I was incidentally diagnosed back in 1994 and in my 30's, have had precious little support from him and in fact he said that my previous doctor didn't know what he was talking about. so I feel more than a little stressed at the moment.

I have read about the Algaecal and Strontium on here and see that some have problems with that, as I have other health problems ME and diverticulitis, like many I do not want to have the prescription that my GP has provided for me, as I know it will make me ill.

I have always been reasonably active with walking enjoy it, but over the past couple of years have had problems because of stress and was unable to get out as much, I have also been told that I am on the tail end of the menopause too, so as you can see it has been a time full of deep joy!!.

I intend to use the site as much as I can for information and look forward to chatting to you all and hopefully gain some perspective on my problems in due course - I do have a sense of humour too!!

Boneme

Osteoporosis and coeliac disease

Christie — Fri, 14 May 2010 17:00:02 GMT

I'm 34 and was diagnosed with coeliac disease in January 2009. I was advised that I was at a higher risk of having osteoporosis due to coeliac disease. The results from my DEXA scan showed I had severe osteopenia (T score in my spine -2.5 and hip -2.3) and my consultant immediately wrote out a prescription for Actonel. I wanted to know as much as possible about this drug before taking it and was shocked by some of the stories I've read and the side effects this drug has. In the end I decided to go against my doctor's advice and increase the amount of exercise I do, strictly stick to my gluten free diet and take calcium and vitamin D. This decision was helped by the fact that I'd had a few episodes of falling down the stairs heavily during the last year (clumsy!) and never even fracturing a bone. A year later my results have once again shocked me but for the better (spine -1.3 and hip -1.7).

The reason for my post is to advise people to research the drug you've been prescribed before taking it. They are very powerful and potent drugs that stay in your body for years and can have side effects for a long time even after you've stopped taking it. This caused great concern for me as I understand that not much research has been done for people of my age who are considering having children in the future. I have now been told that I have a good chance of getting by bone density back into the normal range just by continuing what I'm doing. Admittedly I think one of the main reasons my bone density has increased is because I'm now on a gluten free diet and absorbing the calcium and other nutrients from my diet.

I understand that some people have no other option but to take the medication but I think it's worth delaying things for a year to see if the natural way works first, at least you know you've tried. I've proved to myself that doctor's aren't always right and should prescribe drugs as a last resort only.

New Member

Frances — Wed, 12 May 2010 10:25:03 GMT

Hi, my name is Frances. Two days ago I recieved the results from my recent scan confirming what I already think I knew, having broken an elbow and a wrist since January this year that I have osteoporosis (still getting my head round the spelling). Haven`t yet spoken to my GP, I`m trying to gather as much info as I can before I do, as the little information I have so far leads me to think I would like to go down a more natural route with regards to treatment. If anyone has any idea as to where I might find some of this information I would be very grateful to here from you. mant thanks in anticipation. Frances.

How things change

broken but not bent — Thu, 13 May 2010 20:40:17 GMT

looking back i had the symptons in my first pregnancy but it remained un diagnosed, read on this forum that unlikely in a second pregnancy, wow that was not my experience 2nd one was even worse but least after 4 months of hell got a diagnosis. 21 years on pain free, most of the time, 4 inches smaller and a bit worried about the menopause but recently back in the system which seems to know a bit more about us ladies who get it in pregnancy and have had wonderful treatment so far and much better advice but still think that midwives and drs dealing with pregnant ladies need more information. One gp asked me if i thought i was suffering from 'baby blues' i explained i was suffering in agony and asked her to leave my house, hope things have moved on, sure they have, this forum is an example of that

Will the problem go away if I continue to ignore it?

LindaMIOW — Wed, 05 May 2010 07:08:03 GMT

Hello all

I was diagnosed with osteoporosis when I was 50 (7 yrs ago). Immediately following the bone scan results I was given a telling off by the technician "its all your own fault" etc. My GP prescribed Fosamax and a calcium blood test. I took one Fosamax - carefully following all the instructions - and felt like death, due to contra indications with the anti-inflammatories I was taking at the time.

Due to this reaction I was told to skip the following week's dose but to take the next one. Just prior to that I saw my GP regarding my blood test result which showed I had an incredibly high level of calcium in my blood. My GP decided I should see a consultant but I should take the next dose of Fosamax.

Two days later I had my 2nd Fosamax and the reaction was horrendus. The consultants office phoned and arranged an appointment for 7 am on a Saturday (I didn't know Saturdays started so early) and I had to be helped to walk in as I felt so ill. My oesophagus is permanently scarred and I am due to have a gastroscopy.

To cut a long story short, I had hyperparathyroidism and after removal of the tumour and parathyroid gland, was told my bones would naturally thicken and my osteoporosis be reversed without medication.

Since then my bone scans have shown no improvement and a doctor I saw two years ago recommended bisphosonates IV - which I refused; and protelos - which I tried for a month but couldn't tolerate. The doctor is no longer interested as I won't do as I'm told and I'm not being monitored.

My view is that life is risk. Every action in life is assessed by risk. If the effects of taking a medication incur a risk, this should be compared to the risk of taking nothing.

It's very easy to stick my head in the sand and as I've had no fractures, its easy to continue. BUT, recently I've been getting a pain in my side first thing in the morning, which my GP says is referred pain from my spine being in an odd position while sleeping. Also pains in my chest and back - and I wonder if they could be related to osteoporosis or are totally to do with acid reflux and problems with my oesophagus.