Waiting for a decision on Teriparatide (Part 2) - Bone Health

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Waiting for a decision on Teriparatide (Part 2)

Angelicspirit profile image
39 Replies

Dear friends,

This is Steve again on behalf of Margaret my dear wife.

Just as you dare to think matters are slowly improving, this has happened!

Margaret got out of bed on Sunday morning and went to the bathroom. As she stood up she felt a vice like grip from her spine, around her ribs and crushing her sternum. She has coronary artery spasms and microvascular dysfunction. Her natural response is to use her 'GTN' spray to open her veins. On this occasion the spray had only a limited effect.

A very painful day followed, during which Margaret became more and more certain that the crushing, vice like pain around her ribs, was nothing to do with her heart. The pain in her back was too familiar and too much like that experienced in recent lumbar fractures.

On Monday we went to our GP surgery and the doctor sent Margaret straight to A&E. Her breathing was difficult and simply standing or walking was very difficult. He gave her a report from him to the triage nurse. After being X-rayed, the doctor in A&E informed her that he believed she had sustained 3 more fractures, this time in her Thoracic spine ( I was not allowed into A&E) Margaret tells me that she became very upset in the full knowledge that she was going to have to deal with these new fractures once again without pain relief. She also sensed that there was more to tell her but probably because of her upset, the doctor finished the conversation. He did however tell her that she needed to stay in overnight until the full radiology report was available and to monitor her heart.

The next morning a different, ( Lady ) doctor informed Margaret that 10 out of 12 of her thoracic vertebrae were fractured and that her chest pain and SOB was due to the fractures affecting her lung function. ( That is now 15 spontaneous fractures since Autumn of 2018 ) This doctor spoke very passionately to Margaret in a firm manner, telling her that she needs to start shouting because she believes Margaret to be a 'medical emergency'. She stated that more tests need to be done on her bones to find out if there is an underlying cause for her very severe osteoporosis at such a relatively young age, especially as the fractures are all spontaneous.

Margaret now has mucus which she can't easily clear. The doctor pointed out the need to keep her lungs clear of infection because ultimately that is where the danger lies.

Margaret is now home having promised that she will call an ambulance if she has any breathing or heart problems.

Just to let you know, when we got home yesterday afternoon we still had not heard when Margaret's Forsteo was to be delivered. Anger and upset does motivate action however, and now, following some direct 'phone calls we learn that it is to be delivered on Monday.

Margaret went to our surgery believing she had yet another fracture. 24 hours later, we learned the full extent of what was causing ( and is still causing ) her pain.

To say that we are in shock, doesn't really tell the full story. Personally, I am very angry at the shortsightedness of a major south London hospital that refused to prescribe Forsteo to a (then 63 year old )who was having spontaneous fractures and who cannot take pain killers.

I'm angry that there was no thought to find out why?

This week we will be urgently asking for help and for more tests on Margaret's bones. Clearly in our ignorance, we were very wrong to just 'accept' that Margaret has osteoporosis .

Dear friends, Margaret does want me to let you know that during her time in A&E and the sleepless overnight stay, she had great comfort in recalling the very kind support and words you had posted in reply to her previous posts. Thank you very, very much.

Best wishes to you all and hoping this finds you well. We really do appreciate being able to share this with those who understand.

Margaret & Steve❤️👼🏻🙏

39 Replies
Angelicspirit profile image

Hi JoJoJersey Girl,Margaret has severe osteoporosis, however we need to question why her osteoporosis is so advanced and aggressive . So far the only person in the medical profession who has questioned this, is her GP.

Margaret also has microvascular dysfunction and Coronary Artery Spasms, this is now collectively known as INOCA and there is a multinational team investigating this (once thought) rare condition that in truth, isn't that rare but simply under diagnosed . She has at least one but probably two inflammatory conditions including Lupus and this seemed to develop after a bad reaction to strong pain killers. The reaction resulted in her being diagnosed with Stevens- Johnson Syndrome, which was originally thought to be a one off event but now is believed to affect the patient for years to come.

The whole picture is 'wrong' . Margaret has been a very fit and very active mother to 3 sons (including twins) . Her lifestyle has left her looking still very fit and well and this seems to be at odds with what is taking place internally.

Thank you for taking the time and trouble to reply to Margaret. It really does help and is much appreciated.

Kind regards, Steve & Margaret 👼🏻❤️🙏

fraid profile image

So sorry to hear what a terrible time you are having,hope you can get the help you need.Best wishes xxxx

Angelicspirit profile image
Angelicspirit in reply to fraid

Thank you very much fraid.

margaretjo profile image

Sending you both my love and prayers and very very gentle hugs

Posy-White profile image

Hello Angelicspirt

I've been dipping in and out of the forum and often read things when others have offered very good support, ideas etc. so can add little. I know Margaret has been waiting for Forsteo (do hold out for the full 2 years) and has other medical issues.

I 've had 2 years of Forsteo after one lot of 8 spinal rebound fratures (probablly got the Forsteo so easily because rebound fractures could/might have been prevented if small local hospital kept up to speed on OS medication advice on Prolia!) But I write to ask about pain care and add small tip on breathing (might not be suitable) my husband is a musician after my fractures breathing was v hard let allow coughing, sneezing and laughing. He got me to focus on blowing out a small but long as possible breath, that lead to a stronger breath then a flow. After about a month I could manage, once I had managed my breathing I was able to wear a spinal brace so sitting and standing etc. became easier. Not sure the brace bit will be right for you Margaret but breathing bit might work?

Re pain care are you able to have patches or will that be an issue for your other concerns? I was and still use Butec 10micrograms/hour transdermal patches.

Thoughts are with you both.

Posy White

Angelicspirit profile image
Angelicspirit in reply to Posy-White

Hi Posy -White, Thank you for sharing this information with me. I will practice this as the breathing techniques I used after my lumbar fractures, I am not able to do and your one seems quite gentle. Please thank your husband too! May I ask, did you follow up with anything after stopping Forsteo?

Thank you so much. Best wishes from us both. ❤️👼🏻🙏

Posy-White profile image
Posy-White in reply to Angelicspirit

Hello Angelicsprit,

I found sometimes I was being asked to do things which at the time found too hard/ just couldn't manage but trying to make pre steps very helpful. Otherwise I just couldn't make progress!

Fruitandnutcase's idea of trying to find someone who is skilled in breathing and who will understand your medical issues does sound a good one. I was told I had to have a certain level of ability before going down the brace/spinal corset route.

Whilst on the Forsteo my long-term plan was reviewed so on finishing one medication I had a smooth transition on to another. Given this was done at a face-to face consultation in March 2020 followed by hospital appointments and scans in June, August and September I consider I was very lucky and well cared for on reading accounts of others during the pandemic.

I have lots of food intolerances, which for me results in not being able to absorb foods and most oral medication. I know usually with the hour and often within minutes, burning feeling in the mouth and then a reaction similar to food poisoning. Therefore I have always been limited in what I could be given.

I started on Prolia and did extremely well on that the problem occur after I had been on the drug for 5 years moving from ‘sort of’ mid range osteoporosis to pre osteoporosis and being ‘sort of’ mid range osteopenia, which lead the hospital I was attending at that time, to think I didn’t need any other medication in spite of what was known about possible sudden bone loss and rebound spinal fractures if you just stopped taking Prolia!

At the hospital I now attend in the March 2020 review-restarting Prolia was discussed. I was very fearful of starting the treatment and then something happens pandemic gets worse I or a family member has Covid and I couldn't go for the next injection etc. So it was agreed I’d have two years of a yearly Infusion of Zoledronic acid, scan checks to see what was happening and then reconsider Prolia. Had the first infusion in summer 2020 managed to cop the ‘some people have 48 hours of flu like symptoms’ after the first infusion followed by three months of eye problem, which seem to have some connection with the infusion! Having talked this through at this years review I will be looking at restarting Prolia, knowing that it could always be sent to me in an emergency and me doing the injection. This treatment does work for me and I feel happy that there will be a system in place should there be a problem to travel to the hospital for treatment.

Further thought on pain management - for me heat helped, I have a heated back pad, plus a Tens machine , this dissipated worst of the pain giving a little relief. Do hope you can find something that helps with the pain so sleeping becomes a little easier and therefore healing and just being able to think a little clearer can happen.

Best wishes to you both

Posy White

Sunseaandsand profile image
Sunseaandsand in reply to Posy-White

Hello Posy White,It was nice to read your helpful comments.

Would you mind answering a couple of questions I have please.

Have you not taken up the second infusion of Zoledronic acid, and if so is this as a result of the eye problem you mention.?

(I ask because the consultant is wanting for me to have the infusion for one year and I had a blood clot behind the eye when taking Raloxofine)

What were your T Scores ?

This is something I have wondered about because as I understand it in yourcase the bones were not too bad before treatnent with Prolia, and I do know that you had good results from the actual treatment.

The thing I am really asking is was there a massive change in your bone density when your fractures occured?

I am trying to work out that if your bone density increased so much then you went on to have the fractures what happened wih thedensity of your bones.

I do agree that if theProlia did not give you any troublesome side effects, and increased the bone density to the degree it did, despite your bad experience when it was stopped it seems to be a pod way for you to move forward.

I wish you all the best with future treatments.

Posy-White profile image
Posy-White in reply to Sunseaandsand

Hello Sunseaandsand

Consultant talked with another consultant at another hospital, they can not be sure that the eye problem was / was not triggered by the infusion of Zoledronic acid BUT feel it could have be, so if I was happy to go back on to Prolia, as I did well on this medication then that was the preferred course of treatment.

Did not seem I good idea to find out if the second infusion of Zoledronic acid would also cause eye problems so just sorting out going back to the 6-monthly injections of Prolia.

Scans results are a bit hard to read as done at three different hospitals. I'll find them and post later - today I need to see if I can get a dental appointment before starting the Prolia.

On another note did you get your garden finished?

Best Wishes

Posy White

Sunseaandsand profile image
Sunseaandsand in reply to Posy-White

Hello and thank you for your reply,I think you have made a wise choice, what was the problem with your eye.?

Has the problem resolved now?

I hope it has settled for you, we have enough to contend with without extra problems added to the ones we already have.

Yes the reports from the scans are not always consistent as I myself have found from my recent dexa.

I shall put a post on soon regarding my recent consultation, there are a few questions I am still trying to get answers to.

Yes the garden was started in March and it was 2 months efore they completed.

It looks amazing.

We are both absolutley thrilled with it, the end results are even better than we hoped for.

As a resut of this work and a low threshhold door ( that is actually being fitted at the moment) I now have access to the back of the house with my powerchair, this will make life so much easier for me.

The low maintance of the garden will be a bonus for my husband too, it is all a case of low mainanance now.

Thank you so much for remembering.Xx

Lilyrosemarie profile image
Lilyrosemarie in reply to Posy-White

Hi Posy-White and apologies for jumping on someone else's post. Just very interested and concerned re: eye problems. My consultant is currently trying to persuade me to go on ZA and I have expressed my concerns as I already have eye issues, high eye pressures, a recent Posterior Vitreous Detachment, family history of glaucoma, suffering with blurred vision at the moment (possibly due to high BP meds). Thankyou and Best Wishes to you all.

Posy-White profile image
Posy-White in reply to Lilyrosemarie

Hello Lilyrosemarie

I wouldn’t worry too much about adding into a post no one seems to mind as we are all here to share information and support each other.

The eye concern with Zoledronic acid seems very rare, I am not sure if mine was or wasn’t related to having the infusion. I only went on to Zoledronic acid because I was too worried to go back on to Prolia, between the Covid worries and I was still recovering from the shock of having rebound fractures connected to Prolia, my Consultant was letting me come to terms in my own time. So when the Zoledronic acid plan didn’t go smoothly rather than risk another infusion the suggestion to go back on Prolia was raised again and I agreed.

I personally think, from a non medical / non scientific view that when you have an ‘on going problem’, other illness or side effects etc. can somehow also make for that ‘weak spot’. - Glaucoma is quite a worry and added to that your recent eye issues and I’m not surprised your not wanting to risk Zoledronic acid.

If your Consultant feels you need medication what else could you take? I understand that Ibandronate (Bonviva) also has the minor (but still a risk) of the eye concerns Uveitis and Scleritis like the Zoledronic acid but I don’t know about other bisphosphonates. I know the ROS helpline nurses cannot give personalised medical advice but had you thought of phoning them for a bit of general advice and signposting to information about other drugs? I have always found them very helpful.

(ROS free helpline Tel 0808 800 0035)

Good luck Best Wishes

Posy White

Fruitandnutcase profile image

Dear Margaret and Steve,

Thank you for keeping us informed. You know I am typing this with tears in my eyes for you both. Words just fail me that Margaret should have to be putting up with so much agony. It really is shocking.

As for keeping Margaret’s lungs clear could you push for some physiotherapy - although you may need to pay for a couple of sessions privately because I think there is a backlog because of covid - physiotherapists were very actively involved in keeping Covid patients breathing - but if you could find one who is experienced in working with osteoporotic patients that might help with her breathing.

There really isn’t much anyone can say but I feel so sorry that she is suffering like this and I know how angry you must be feeling that things have reached this stage. I felt angry that there were so many missed opportunities before I was diagnosed.

My very best wishes to you both.

ChristineK profile image
ChristineK in reply to Fruitandnutcase

Hi FruitandnutcaseI would advise anyone thinking of seeing a private physio to beware, as I have osteoporosis and osteoarthritis, and am waiting to see a physiotherapist through my local Musculoskeletal department for severe shoulder pain. As I was informed that the waiting list is long, I suggested that for the time being, I should see a physio privately and I was told that if I did this, I could not then be seen by the NHS, hence I am still waiting

Fruitandnutcase profile image
Fruitandnutcase in reply to ChristineK

Gosh! I saw my physio for about twelve weeks from when things opened up after the second lock down until just before Christmas - the NHS hand therapist I saw before that for my CRPS told me there was a long waiting list because of covid. All the physios were out on wards treating covid patients - I know of some who said she owed her recovery to the physio who worked with her- I could not have waited any longer though.

She got me from being in constant absolute agony and having very little movement in that arm - although she could lift my arm in the way that was causing me pain to do it myself which was most odd. Anyway I went from that to being able to fasten my bra behind my back again.

I know what you mean though and I can see why the NHS wouldn’t want you swapping between the two. I hope you don’t have to wait for too long before you are seen.

springcross profile image

Oh my goodness Margaret and Steve, what an awful time Margaret has been having, I'm so sorry to read all this, she must be in so much discomfort and I can understand what a shock this has been to you both. The only good thing is that the Forsteo is being delivered on Monday. I can only wish you all the very best and hope that soon Margaret will be in minimal pain and discomfort. My heart goes out to you both and I hope you both find the strength to cope with this awful blow. 🙏 xx

Pinklady45 profile image

You are both in my thoughts and I send my love.

Angelicspirit profile image

Yes, I do use it. It is what helps me to deal with the pain. Some time ago, a very good acupuncturist told me that his treatment could only ever be complementary . I meditate and listen to angelic music. I've also used flower essence but would appreciate any Imput you may have. Thank you for your support. 👼🏻🙏❤️

bluebell99 profile image

I am really shocked and saddened for what Margaret has gone through and is still suffering. It sounds like you have an ally in your GP and I hope this continues for you both.

It is very distressing to have spontaneous vertabral fractures and there is the constant worry of them recurring. I know with mine I kept wondering how I could have caused them and really blamed myself for being careless , but that is the point, they are spontaneous and there is no real trigger.

Please tell Margaret I truly wish her to get well and soon. I think you will have to do some insisting on the physio front although it may be a little soon yet as even a tiny movement can bring on excrutiating pain.

A respiratory doctor advised me to try some gentle singing as my ribs are squashing my lower lungs. I started with nursery rhymes, I feel a bit daft but I think it has helped a little, if nothing else it is a mental distraction from the pain by trying to remember the words :)

I really feel for you both, attention is quite rightly on the patient but sometimes the carer, (you) can be forgotten in this awful situation.

Make sure you take a little time out, even for a short walk or read. My husband was extremely stressed and in tears for me, something I have never known before in over forty years of marriage. He still has worry days and hovers around me, which although understandable does not help either of us. It is early days for you but hopefully once the Forsteo has started to kick in you will soon both feel so much better and in control of your lives again.

Gentle hugs and best wishes


Angelicspirit profile image
Angelicspirit in reply to bluebell99

Hi Kay, Firstly, our sincere apologies for not answering you sooner. We really do appreciate the time and trouble you have taken to share your experiences and also for your kind advice.You are so right about self blame. I have witnessed Margaret being so careful since her lumbar fractures. She repeatedly tells me that she feels they're not healing and that her whole upper body feels unsupported and about to collapse. That fear came true a couple of weeks ago with multiple thoracic fractures and Margaret's first reaction was 'what did I do wrong?' Of course she did nothing wrong and the real question is ' what is causing my osteoporosis to be so severe and fast paced? '

Margaret's physio, who was only ever able to do 'phone appointments told her that in view of what Margaret was describing, she would not want to actually touch her yet. Just as well, given what has just taken place.

Margaret sends her sincere thanks for your advice regarding singing. She started trying that straight away and found it helps her breathing very much.

The Forsteo is still in the fridge and we haven't heard from the nurse yet. However, Forsteo is contra indicated for any bone cancers and it is something we have to consider, particularly multiple myeloma. Her very supportive GP, didn't dismiss her when this was mentioned but instead emphasised that Margaret should have further investigations as soon as possible. The only way we have been able to do this, is to have a private consultation ( Wednesday next week). Our dilemma is, if the Lloyds nurse announces he or she is coming one day soon, should we start the much needed treatment or hold off until any cancer has been ruled out?

We really hope that you Kay, are as well as you can be and send our very best wishes.

Margaret & Steve

56jennywren profile image

Hi Margaret and Steve

From one sufferer to another I sincerely feel for you and send you gentle hugs.

I suppose in a way I am lucky that I can take pain killers, but the pain still breaks through with co-codamol and oramorph. There is nothing like it.

I agree that it is the breathing that is difficult with the collapse of the spine and not all hospital consultants acknowledge it. I am trying a new asthma inhaler and it has helped clear the mucous. As soon as I lie down I get wheezy and I have been told by A&E doctor two weeks ago that I must have treatment for my OP and keeping the chest clear is a necessity. I don't know if that was spurred the hospital into action but I finally saw consultant on Wednesday. Like you Margaret I have been prescribed teriparatide (terrosa) and will have to wait for the nurse.

The doctor is correct you are going to have to shout because unfortunately that is how it is at the moment. At least you have your wonderful husband to shout as well.

My consultant said he was seeing me as a special case as he is not taking on any new patients. He doesn't have a nurse to help him and no fracture liaison service. What happens to all the other people needing treatment?

Take care and I hope it all goes well for you both on Monday

56jennywren profile image

Hi Margaret and Steve again

Some thoughts with the pain. I know Margaret can't take painkillers.

Would you be able to use Voltarol Gel (diclofenac) ? I can't take anti-inflammatories but find this ok and it does not affect the gut. I gently rub in to the hips and back - perhaps do a test patch first. It's available on prescription but I think you can buy over the counter as well.

Another product is Biofreeze. GP won't prescribe it. Recommended by physio but relatively expensive.

The other thing to ask orthopaedics about is Kyphoplasty. Apparently they don't like doing it anymore as it can cause more fractures in a cascade, but with Margaret having so many they may be able to do it in some. It does need to be done before the fractures heal.

HeronNS profile image
HeronNS in reply to 56jennywren

The problem with medicated gels is although some doctors don't believe this they are absorbed through the skin (obviously or they wouldn't relieve pain) and can then travel through your entire system. I used diclofenac once on a painful knee and had a gut bleed within a day.

56jennywren profile image
56jennywren in reply to HeronNS

I know the problem, that is why I cannot take diclofenac and other anti-inflammatories with bleeding in the gut and why I suggested doing a patch test to Steve and Margaret. I haven't had any problem with using a gel, I wanted to alert Steve and Margaret to possible ways of alleviating pain.We are all different in our tolerances to meds and we make our own decisions. Sorry that you had a reaction to it.

HeronNS profile image
HeronNS in reply to 56jennywren

If you read the leaflet that comes with the get you'll see it isn't even recommended for use in aged people such as myself, but I didn't read the leaflet first as I was using some my husband had on hand at the suggestion of a neighbour. Now I know better! It was recommended by my doctor. Unfortunately the doctor I had for many years retired (right around the time I began to become a more interesting patient) and the gps I've seen since then have no knowledge of my history or my family history, so I do have to pay attention. Slipped up this time.

56jennywren profile image
56jennywren in reply to HeronNS

Steve and Margaret

Hope all goes well tomorrow.



Copied and pasted from my PIL link above

DO NOT use Voltarol Emulgel if you:

• are in the last 3 months of your pregnancy (see

also pregnancy and breast-feeding section)

• have an allergy (hypersensitivity) to any of the

ingredients in the product (see Section 6 ‘What

Voltarol Emulgel contains’).

• have ever had an allergic reaction to diclofenac

or other medicines used to treat pain, fever or

inflammation, such as aspirin (acetylsalicylic

acid) or ibuprofen.

Symptoms of an allergic reaction to these

medicines may include: asthma, wheezing or

shortness of breath; skin rash or hives; swelling

of the face or tongue; runny nose.

This medicine is not recommended for use in

children under 14 years of age

HeronNS profile image
HeronNS in reply to 56jennywren

Possibly the warning I saw was because I had the extra strength for arthritis? I know I read it because I was really shocked that my doctor would recommend it. Fine print somewhere! This would have been about a year ago when I was crippled with my injured knee.

Interestingly, several years ago, this: cbc.ca/news/health/pull-ant...

I may also have found some other contraindication personal to myself. As my mother died at a young age of brain haemorrhage and I have two first cousins (one each among children of my mother's two siblings) who have had a non-fatal brain haemorrhage in their lifetime, I am very careful what medication I decide to take. Ibuprofen is another no-no, as is licorice which is sometimes recommended as a supplement.

Pinklady45 profile image
Pinklady45 in reply to 56jennywren

I use Voltarol gel daily for my hands and one knee and find it helps a lot especially with my hands. I get it from my Doctor on prescription but she only lets me have one tube a month! Why are they so mean when its a lot better for some of us than pills?

56jennywren profile image
56jennywren in reply to Pinklady45

Frustrating. I suppose they have to watch their budgets but I agree its better than pills. They probably think that it's working as a placebo and we are imagining the benefit,

HeronNS profile image
HeronNS in reply to Pinklady45

Voltaren is not completely harmless. I used it once and had a gut bleed. Yes, I am referring to the rub. Somewhere I read that it isn't advised for use by people over 60 but I haven't been abe to find that advisory since. Yes, it may be better than pills but it is not completely safe. This may be why your doctor is limiting the amount she prescribes.

I have found drugfree Flexiseq really helps my knees. Unfortunately as I'm not in the UK I have to import it via "A".

Pinklady45 profile image
Pinklady45 in reply to HeronNS

I was talking about Voltarol Gel which in the UK can be bought in any Supermarket! There are no age restrictions on it. Flexiseq is also freely available in the UK.

HeronNS profile image
HeronNS in reply to Pinklady45

Yes I know Flexiseq is available in UK, I'm pretty sure it originated and is made there! According to the company it is not licensed to be sold in Canada. Rolls eyes. There are two strengths of Voltaren and stronger of them has the caveat. It was prescribed to me by my doctor who doesn't know my or my family history, but I found out after the pharmacist gave me a free sample because it is ridiculously expensive on prescription that it is also available otc. Rolls eyes again.... As I pointed out, I had a dangerous reaction to my single use of it. There was even an attempt to have diclofenac removed from the market a few years ago as it was felt it could be as dangerous as the already removed Vioxx.

HeronNS profile image
HeronNS in reply to Pinklady45

I have found the leaflet in a rather old (and now expired, we should throw it out) Voltaren extra strength gel that my husband has. Quoting the relevant bits: "For adults betweeb 18 to 65 years...." and "The gel should not be used for more than 7 days for muscle and joint injuries unless recommended by a doctor." These may be statements particular only to the product as licensed to be sold in Canada. In my case this medication was contraindicated as I had already in my lifetime had a couple of serious gut bleeds at least one of them caused by a NSAID (naproxen).

And more reading than you ever wanted, the government document:


Sunseaandsand profile image

Hello Steve, (and Margaret)

I hope today is being kinder to the both of you.

Margaret you have my full sympathy the pain from the spinal fractures is the worst pain ever and becomes so hard to tolerate, all I can say is that the Acute pain as you know will pass.

The chronic pain that the fractures leave behind is another thing entirely and something that does effect our quality of life.

You have me in awe and full of admiration that you were able to go to the GP and then to the hospital. To be able to do that without any pain relief is quite something,you deserve a medal.

When my fractures come along I can not physically move a fraction and no way would I have been able to do what you did.

Getting off the bed was something almost impossible, to walk and get in and out of a car I just don't know how you did it.

Have you not been offered Diazapam for the muscle spasms.??

This is not a pain killer and is only for short term use. It acts as a muscle relaxant which is what is really needed when the fractures occur as the pain we feel is from the muscles going into spasm.

Diazapam was never mentioned to me until I already had suffered 3 fractures ( why I had not been given it before is yet another dissapointment with the NHS)

It also helps with sleep which is something I imagine you are lacking at the moment.

Perhaps Steve could speak to your GP on your behalf and you could try it.

Steve I would push your GP to get appointment with Orthotics they will be able to supply a brace best suited to Margarets needs.

In my opionion it is an essential aid whilst our fractures are healing.

Although they can be uncomfortable they offer tremendous support.

With my last 3 fractures I was unable to get off the bed even with my husbands help.

I had to inch my way to te edge of the bed this taking just over an hour, this I had to do on my stomach.

I came off the bed on my knees and my husband then got the brace around me.

This was THE only way I could I could get onto a commode chair.

Having that brace was a god send .

It is appalling that Magaret was sent home from hospital with no help I know how this feels because I have also had it happen to me.

I really do hope that you can find out the reason for the fractures happening, and I would be so interested to hear the outcome.

I am in the same situation fractures keep coming and I am told they do not know why I am losing bone so quickly, after numerous tests and our keep asking for an explanation the only one we get is that everybody is different and lose bone at different rates.

I really still can not accept this explanation but it is the only one they will give me.

I would not say you were wrong in accepting osteoporosis as a diagnosis, we put our trust in the doctors as they are the ones who should know better,if an underlying cause is found for Margarets osteoporosis then it is the doctors who are in the wrong.

Well good luck with the Forsteo and I hope that you will get the answers you are searching for.

Best wishes tthe both off you. Xx

Angelicspirit profile image
Angelicspirit in reply to Sunseaandsand

Dear Sunseaandsand ,You really brought tears to Margaret's eyes. You clearly have through your own experiences, a deep understanding and warm empathy as to what she is experiencing. Thank you, not least because we realise what you have had to endure and are no doubt, still enduring daily.

Margaret was prescribed Diazepam just before last Christmas following her lumbar fractures. She found that any benefit was overshadowed by the very 'spaced out' and off balance feelings she was getting.

Currently, Margaret is coming to terms with how much her body shape has changed and the effect that has on what she can comfortably wear and 'do' and also the additional pain and discomfort it causes.

The Forsteo arrived on Monday, but so far, we haven't had a call from the nurse. Margaret's GP is asking her colleagues what can quickly be done to do further tests on her bones. Hopefully we will hear back from her today.

I must go now but will keep in touch. Thank you again for your kind help.

Steve & Margaret.

Sunseaandsand profile image
Sunseaandsand in reply to Angelicspirit

Hello Steve,Thank you for your reply and kind words especially at a time that you will be finding so difficult for the both of you.

I feel it must be very upsetting for my husband when the fractures occur knowing he can not do anything to ease my pain.

I know how it hurts to see the people you love in pain and are helpless to ease it it for them.

I imagine this will be how you are feeling right now, but the most important thing to us is knowing that you are there for us ,and the safe and secure feeling it gives us.

Having a good GP behind us is a big bonus, I waited a long time before one came along and I hope he does not decide to up and leave any time soon.

I too know how the strong pain killers can give you a feeling of being spaced out, it is not a nice way to feel and this is one of the reasons why I prefer to take advantage of them only whilst the fractures are new, and late in the day when the pain becomes too much to cope with.

When the fractures are new my husband will give me the diazapam at bed time.

This enables me to get some much needed sleep thus allowing the body to heal.

If used in a way to suit ourselves the pain relief does really help.

We decided between us to try lower doses and found it worked much better, it reduces the spaced out feeling and also there are no horrible side effects when stopping them.

The shorter acting pain relief can be controlled more easily than the long acting.

I have also found that oral pain relief is much more managable than any patches.

Of course this is my opionion and will be different to others.

I do not wish to push my experiences and findings onto others, but for anyone else reading this, with much practice and my husbands help and of course going with what my body tells me this is what I have found to work best for me.

The changing body shape and clothes issue is heartbreaking. In the winter we can hide under loose fitting jogging bottoms and oversize jumpers but the summer is a completely issue.

I suppose now Margaret will know be like myself where she has full wardrobes of clothes that can no longer be worn, clothes are over long, tight where they should not be, gape in places they should not.

Even our underclothes do not fit, ordinary bras are impossible and even briefs take on a different fit.

Yes Margaret I am sorry but things are hard to accept.

Handbags can not be carried by me now and when I see people nearby doing things I should be able to I become very envious and sad.

Add to that I now weigh less than 6 stone and as well as wanting to disguise my mishapen back I want to cover my thin little wrinkly body.

Trying to do that sitting in a hot insulated wheelchair makes me prefer to stay home.

Sorry Steve and Margaret and any anyone else who is reading but I do have to have a moan about it now and again.

Now I feel better for having that moan.

On the plus side:: Well gone are the days of being weighted down with heavy shopping bags.

I do not have the cooking to do, or the cleaning.

I don't have to do the washing or the ironing or rush back from the hairdressers to pick the granchildren up from school.

The list is endless.



Steve and Margaret take strength from each other and I so hope the blood tests get done quickly.

Members on here truly care about each other, we can share good times as well as the bad and it helps us all. Xx

ChristineK profile image

I am so very sorry that Margaret is going through so much pain and my thoughts prayers are with her 🙏🙏🙏

Angelicspirit profile image
Angelicspirit in reply to ChristineK

Dear Christine and if I may, dear ALL OF YOU LOVELY PEOPLE!Thank you so much for all the warm, caring advice you have each posted. You are all truly inspiring and In time I hope to answer you all individually. I read every single word of every post to Margaret. You are educating , sharing, caring and really helping with your kind posts. Thank you so much!

Briefly, to bring you up to date, we have been preparing to fight our corner but of course as you know, it's mentally exhausting especially when the patient is in a great deal of pain and is sleep deprived.

Margaret's Forsteo arrived as promised and on time last Monday. ( yesterday!?) We haven't heard from 'the nurse' yet.

Margaret had a lengthy 'phone consultation with her GP this afternoon who was only aware of the discharge note of multiple thoracic fractures, from hospital. To date she hasn't got the report promised by the last doctor she saw. Margaret's GP remains very supportive and in agreement that there could be a secondary cause of the osteoporosis. She is going to seek advice from her colleagues as to how she gets Margaret the best help and as quickly as possible. She did mention possibly having to start with a private first assessment and then to continue on the NHS . She has promised to call back as soon as she has a course of action in place. So, we have to be patient again but so far, this young doctor has always done exactly what she had promised.

Margaret is in a lot of pain and is still unable to lay down. Coughing to clear her throat is very distressing and painfull. We are carefully watching her arrhythmias and chest pain ( something she has daily because of microvascular dysfunction and vasospastic angina ) Naturally we have a heart monitor and watch her generally good, blood pressure. The GP was very shocked to learn that the multiple fractures were in fact 10.

Thank you for the breathing exercise advice, it has really helped !

We will, if we may just keep letting you know how life progresses.

Our heart felt thank yous to you all.

Kind regards, Margaret & Steve. ❤️👼🏻🙏

ChristineK profile image
ChristineK in reply to Angelicspirit

Dear Angelspirit,Thank you for keeping us up to date with Margaret's progress. It's so reassuring to know that you have a caring GP who is doing as much as she can to help you in this traumatic situation, and it's wonderful that she has you there to help her to get through each day. Please continue to keep us informed of her situation, as there are some caring people on here who are really concerned for her welfare. Sending love to you both and keeping you in my prayers 🙏🙏🙏

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