I am a female with very severe Osteoporosis, my T scores are - 4.6 in the spine and - 4.2 in the hip.
I am now 65years of age and was diagnosed when I was 49 with osteopenia.
I have had treatment with Bisphosphonates, Forsteo, Raloxafine and Prolia.
I have 4 spinal fractures, one of which occurred 8 years ago, I then had 2 more 1 in May 2017 and 1 in June 2017 my more recent one was in January 2019. These have happened without any trauma and whilst on treatments.
My journey with Osteoporosis has been, and is a painfull one, it is filled with frustration and indecision.
I am one of the unfortunate people who have and are suffering the side effects that the treatments have brought with them.
The last 3 fractures have disabled me and the most recent one has put me in a wheelchair and made me dependent on my husband and family for most of my needs.
I have wanted to share my experiences with others for some time now and also hear from others about their experiences, both with the treatments for Osteoporosis and fractures of the spine, and the problems that arise.
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Sunseaandsand
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Hi I am also 65 and was diagnosed with osteoporosis about 6 years ago. I had a spinal fracture almost 2 years ago and also found I had several compression fractures.
I took alendronic acid for 6 months but couldn’t tolerate it so have just had my second infusion of zoledronic acid. I worry constantly about the side effects of the medications as I also take meds for rheumatoid arthritis and other issues.
I don’t know if my scores have improved yet but have pain daily. I try to do what I can but get very frustrated because I often feel so unwell.
I hope you get some comfort from replies on this page as there will be many people who understand your frustration and indecision.
I am so sorry to hear about your very difficult experience. How frustrating and disappointing that you have done everything you thought right and still your bones have not improved.
It's a bit late now, but I hope you were properly tested years ago to find out if there was a secondary cause for your osteoporosis and poor response to any of the treatments? americanbonehealth.org/bone...
If you had a so-called secondary condition no amount of bone medication was likely to help you until this had been addressed. If this was never addressed it's not too late!
Hi again, I do not believe I have had the full amount of tests that could have been done.On doing my own research there are so many rare conditions that can be a cause of rapid bone loss.
I think the more common ones have been investigated but perhaps the rarer ones have not been bothered with because they do not even know they exist.
It has always been a matter of you need the treatment and not let's find the cause.
To my knowledge I only have the routine blood tests.
These are what I have done before my dexa scans.
I have been having scans every 12 months but my next one will be eighteen months to two years from the last one.
I have not been given a reason as to why my bone density is so low.
I have suffered such bad side effects from the treatments that I have had some periods without any.
When I was on Forsteo my hips went down 14% in the first 6 months, by the end of the treatment I had recovered most of it but still ended up lower than I started.
It's interesting that you lost 14% after starting forsteo and then regained it. Does anyone know why? Does it take that long to benefit bones, but instantly interferes with nature's response and so cause the drop? So many questions go unanswered in the doctor's office. Sometimes I don't ask them because there seems too many questions to ask arising from what the doctor tells me. Yesterday, a specialist did a blood test for me and said blood testing is the way to read what is happening now in the bones. She said that dexa scan gives an image that in some cases may give a false positive, and in any case, it only indicates a change after long periods of time, 2-3 years. Taking what she said and applying it to your experience it seems as though your doctor is thoroughly checking what is happening in your bones through blood testing. I wonder, have you asked your doctor what specifically he is looking for in the blood tests, and what are the tests telling him? Do you ask for print-outs of your test results? I can feel so tired that it seems not worth the effort, but it helps me to have these and track for trends or spikes then I have clear questions to ask about cause and treatment options. It also helps me to remain me, not get lost in being done-to by a statistical approach to my health. It is a battle. We can do it!
Hi yes I have all the dexa scan results that I ever had done although ther seems to be a couple missing.
I always ask for them and I question everything.I understand that the blood test is for bone markers this tells them the bone turnover.
When on Forsteo they did a scan after 6 months of treatment that's when it showed up that the hips had declined they went up at the end of two year but never recovered to ther original state.
There was a very slight increase in the spine which was lost with much more at the end of treatment.
The reason I was given when asked was it happens sometimes.No other explanation at all.I have usually had my scans every eighteen months but over recent years I've had them every 12months.
My next one though will be 2 years and due for it next year.
I think you have a really good attitude to your health it's admirable.
Then that's the blood test I had on Tuesday I guess, a baseline to mark bone turnover. Forewardmotion, a member on this site, asked the name of the test, but I didn't know.
My attitude to my health, which you kindly say is good, is an evolving one, and it is challenged all the way. I still rage and panic at every development but I begin to find my way home to myself quicker now. It began with a very traumatic birth of my child 38 years ago. I had pre-eclampsia and delivery with spinal anasthesia. Three years on I then had 3 prolapsed and ruptured lumbar discs injected with something to mop up 'inflammation caused by ruptured disc'. At that stage I was still angry at the hospital that didn't measure up to standards in obstetric/natal care but the back pain eclipsed that. The pain killers - they didn't, they just veiled it with nausea and foggy brain. By chance, or from lack of alternative, I discovered when lying down, if I went beyond not fighting the pain, if I focused on it, just let it be, my mind would wander away from the pain. Today I can say it's a three-step basic process. Observe, accept, move on. It isn't a magic formula, it takes a lot of, (for me, very slow-learned!), self-understanding. And separating what I can't change (them or it) from what I can change (me). Luckily for me, I am full of faults so there's loads to work on. I still look closely to see if I can get well treated by doctors, and how to be better treated. I no longer expect them to "care" but I feel very blessed when they do. I suppose the way we have for centuries been governed, paternalistically, lays down in us a belief that we shall be looked after. We can be surprised, enraged, depressed, frightened, any or all of these, to discover that we shall not be looked after. But in the end, that is good news, because we can and we'll better, look after ourselves with the help that we chose. Our old attitudes are hard-wired, and every step forward needs the old wiring to be taken out. My dog is asking to be taken out now. Best wishes, and thank you for prompting me to think about things.
Hi again the name of the test I believe is CTX which measures the level of bone resorption. Most treatments slow down bone resorption to allow bone formation to catch up. Only teraparatide increases bone formation. Perhaps you can shate this with forewardmotion as I do not know how to do that. I also have small bulging discs and oesteoarthritis in the spine, on my recent MIR scan it shows narrowing of the canal also.
The experience I have had with the Orthopaedics dept has not been a good one.
I have requested a full copy of the report from my Scan.
Have you tried the basic EFT procedure it's something that I was shown at the pain management clinic, it's possible from other things you are telling me that you may find it helpful. Enjoy the dog walking, a great way to keep fit and healthy.
do you know what the blood test was? I want to see if that was one I had prior to the dr. wanting to put me on prolia. there were several tests... I appreciate it.
2019pro, I don't know yet. Have you seen sunseaandsand response to me above, where she mentions possibly CTX? I may have the answer tomorrow. It can take 2 weeks to get blood test results unless they are urgent... Have you read "Vitamin K2 and the Calcium Paradox", Kate Rheaume-Bleue? Published 7 years ago, so there are more recent discoveries than included in the book, (including blood tests) but nothing contradictory that I have seen. HeronNS gave the hedzup about this book, and I have found her journey with op very helpful to me. If you are not taking Vitamin K2 supplement and do not know if you are absorbing enough from your diet, then it can be good to know that it is needed to steer calcium into bone, and away from arteries where too much calcium can cause heart attack and stroke.
Just wondering if you have been checked for Coeliac disease or other health issues? Many illnesses, some with no obvious symptoms can affect your body's ability to absorb important minerals and vitamins.
Coeliac disease, undiagnosed for years was the cause of my own Osteoporosis.
Sorry for the late response I am only just finding my way around the site and how best to respond to messages .
Yes I have been checked for Celiac disease several times over the years and always it shows I do not have a problem.
They tell me they do not know why I am losing bone so quickly.
I have often thought if the answer to that could be found then I would not have gone on to have so many fractures and the future would not look so bleak.
I do not know if you and others are able to see when I write to other members regarding my experiences.
Thank you for your interest and please keep in touch.
My heart goes out to you.... I am unable to have treatment as my one and only infusion gave me such bad side effects that even now I am still getting over.... So I admire your courage to pursue treatment and manage the side effects.... As others have said this is a good place to make comments & get feedback & information, it makes sure you're not alone.... I am 55yrs old have Osteoporosis in my spine & osteopenia in my hips.... Currently my Physio is supporting me as Rheumatology are stuck on Infusion (unable to tolerate tablets) which as I've said gave me awful side effects.... Keep going....
I am sorry to hear that you also are suffering side effects from your 1 infusion.
My first treatment was of 3 monthly ibandronate infusions, at the time I was pestered by the doctors and nurses constantly to have the yearly one.
This I refused at the time and also many times since.
The side effects from the 3 monthly injections were so bad that as a result I ended up seeing 3 different consultants because of the problems I was having.
I had biopsies taken from fingers knee and soft palette.
A maxi oral surgeon I was under advised get of the bisphosponates and ask to be put on something different.
He was currently treating 3 patients with ONJ whom he said were all as a result of Bisphosponates.
He also said this was a huge problem for the surgeons as where were they going to take new bone from to rebuild the jaw.
When I first began any treatment ONJ was in the patient information leaflet as a rare side effect of Bisphosponates.
Nowadays other treatments for Osteoporosis also list it as a side effect.I am pleased you are getting good support from Physio.
I have also found them very supportive but unfortunately for me I have not been able to have hands on treatment since I was diagnosed with Osteoporosis.
You don't say whether they are offering you any other form of treatment or if you would want it.I personally feel stuck between a rock and a hard place and at the moment contemplating what to do next.
Thank you for getting in touch it really does help.
That is like me I really don't know which way to go & I've had no support from Rheumatology who as I said are stuck on Infusion.... GP not sure what to do, feels it is Rheumatology but even when I spoke to the Osteoporosis Nurse for our NHS area she was very defensive about Infusion & that next time would be different... I don't wish to take the chance again... So I'm trying to get bones as strong as I can take advice from Physio.... not looking forward to my Dexa Scan (2020)… Yes being able to say about things helps us all....
It's always the case from the GP that Oh you need to get in touch with the hospital then when I call the nurses at the hospital they say see your gp!! Also the nurses say they have not heard of the side effects I experience it must be caused by something else, even when it gives it as a side effect in the patient information leaflet.
For example when I was having Forsteo I was having amongst other things terrible bone pain they said it was not the treatment causing it,again it is listed as a common side effect.
At times is has actually made me feellike I've been going mad.
At the moment I am supposed to be having my care shared between the hospital and the GP but as regarding anything other than the Gp giving me a Prolia injection I have been left in total ignorance.
Maybe like everything else I have to sort it out myself!!
I wish you luck with your way of handling your situation and with help and advice from Physio and perhaps a dietician you have good results.
You don't say what your T scores were at your last scan.
My T Score was -3.2 ? Lower Spine & I have Osteopenia in my hips (2017 Dex Scan).... NHS just keep offering the Infusion or Prolia has been floated by NHS Osteoporosis Nurse (by phone!!) but that is it & to be blunt just not going through the side effects again or wishing to have other especially after reading up on Prolia....I have tried HRT but got Migraines so had to stop after a year..... I am unable to eat dairy so have Vitamin D drops daily & try to eat fish, due to my Gut Dysmotility my diet is really restricted (whole other story) but it does effect my bones.... So Physio have been a brilliant though I am sure this will come to an end without knowing if it has worked... I do think sometimes the Professionals (not all) forget that it is good for people to know where they are at with treatment, what has been effective or not so that a patient can then make an informed choice of treatment.... or at least encouragement to know what works so you feel in yourself you are making a difference.... So keep going Sunseaandsand…. & keep strong... Here's to some summer sunshine....
Hi Charlie, I have found some of the things you have mentioned of great interest but especially the gut Dysmotility I was diagnosed with that same condition a good number of years ago.
I would be extremely interested to hear how it effects you as I have never had the opportunity to discuss with anyone else.
The decision with treatment is so difficult I am getting anxious about what I am going to do.
When I had Forsteo my weight went be low 6 stone they ended up investigating me for cancer but I knew it was the treatment.
Same with the Prolia I went below 6 stone in the first 2 months of taking it.
I don't want to blame the Prolia on everything but I have gone through severe conspitation muscle pain, bone pain, loss of voice , the nausea is terrible and I could carry on with the list.
I have also found that the different symptoms have come at different times not all at once.
I have even wondered if the moment I feel is the bowel.
I just don't know what to think anymore.
Reading other people's experiences has helped a lot as some times you feel like your going mad.
I've seen so many consultants and they do not know what is causing my other health problems.
Perhaps I am beginning to find out!!
I feel very strongly that the majority of health professionals prefer to keep you ignorant of what's going on and forget that it's a patient's body and we have every right to know.
They only tell you the things that they want to.
Try to get the foods that have the highest calcium content.
I found out recently that sausages are a good source of calcium and when I mentioned to the Osteoporosis sister she looked at me as though I had grown an extra head.
It constantly changes but certainly got worse after the Infusion.... I am unable able to tolerate Dairy, Wheat, Gluten & sweeteners, colouring, green leafy veg, certain food starches... (The Fodmap Diet via a dietician helped to see what makes things worse) the list goes on at times but I know what I can eat so I stick to what I can.... It is the first thing to get worse if I get an infection or virus & at times especially at the moment is limiting me going out & about (seeing Consultant soon)…. My weight fluctuates but at the moment it is steady..... I have weeks I am not hungry & have to just dig deep & eat, the acid reflux is awful & I now have a permanent sore throat sounding voice & apparently my voice box is inflamed.... small portions only sometimes helps, I graze eat if I have a flare up of symptoms, drink plenty of water... As you mention getting passed around consultants doesn't help.... especially blank looks or 'getting anxious doesn't help' line... !!! I actually don't have the energy to get anxious, our Gut is a strange thing & I know it is only now being slowly understood but then only by Consultants who think outside the box, I've done that many food diaries I could write a book.... Medication is always a trial due to bulking agents in tablets, fructose-glucose, sweeteners etc in liquids.... I cook my own food from scratch so lucky I like cooking.... I experiment with recipes some are a success & some welllllllll my food recycle bin gets it - good job I have a large one!!... Stick the menopause into the mix & yes there are days that totally stink.... The Osteoporosis Service for my area kept sending me advice on how to increase my dairy intake with dairy food..!! So yes the Gut is very misunderstood or ignored - Perhaps Professionals are frightened to say they don't understand or to seek advice from others.... It is frustrating & as we know we're not alone.....
Keep pugging away & yes this forum comes in handy...
Hi Charlie 50 do you have medication for the reflux,I do find it difficult to treat.
It has always puzzled me though because I had tests(which were horrible) one of which involved wearing a monitor for 25 hrs. This was to record the level off acid it was reported back on that my acid levels were fine.
So what is this that is causing the sore throats especially in the mornings??
I take Orodispersible Lansoprazole morning & evening at the highest dose - Gastro Consultant actually mentioned that no further increase would assist (which is fine as the tablets are yukky), Gaviscon after every meal, and try & eat a small biscuit before I go to sleep so my gut has something to 'work' with rather than just producing acid....So may help my sore throat in the morning... I try not to eat acidic foods & drink plenty of water - some days all is fine others well I'm sure you know what it is like...
Charlie, have you tried intraoral spray of 3000 vit D a day? I have fat absorption issues in the gut, and had painful cramps with alfacalcidol so this is a way I can get some vitamin D. It seems to me as though the health service staff have such a long script they HAVE to tell us that there is no time to hear or discuss what we experience, or any insights we have into our condition. A big problem is that there is usually no obvious agenda for a consultation: unless we start off by asking "how is this going to go? Would you like me to ask my questions first, so you have time to consider them, or do you want to discuss my test results first?" We wouldn't go to ANY important meeting without having a plan, itinerary, or such? Without it, we are just non-participatory and done-to beings who will get a text on their phone while we travel home asking if we would rate the service. (NOW they want to know what I think!) Have you ever been in a consulting room where the chair for your friend is BESIDE the one you sit in? It usually is not. It can help to ask your friend, when you are invited to sit, to move the chair so they are beside you.... Best wishes to you
I take Vitamin D drops... Yes being prepared for a consultation is good... I now write things down before I go which helps as I can leave it with the consultant or at least keep us on track... Do you ever find some professionals go off at a tangent especially when they don't understand...??? My hubby is great if I take him, he pulls a chair right round explains why he's there & we start the consultation.... He will at times take notes … I have menopause & hEds (just too keep me on my toes as well) so taking in information can be challenging at times..... I wish you could get a copy of the letter they send to the GP... I actually went to a private consultant for something & wow it was great, had time to explain, consultant didn't keep looking at the clock, got copy of letter that was sent to GP so that refreshed my memory & when I saw GP we could have a good focussed discussion..... That is not to say my NHS consultations have all been bleak some have been good.... & I have got better at asking questions first or leaving a silence pause so they need to talk to me.... I have a good thing now by saying 'It is on my Electronic Record &/or Referral from GP etc' when they ask 'what brings you here'..!!
Would be interesting what Professionals would think if there was a rating text sent out.... The Care Opinion Website I think is the closest we get...
Hi Sunseaandsand. It's heartbreaking to hear how you have suffered while on treatment especially when treatment may have worsened your problems. My bone mass is declining. According to dex scan, I have osteoporosis. Prolia was prescribed a year ago. I didn't wish to take it before trying to improve through diet, and this decision is shortly to be reviewed. I had chemoradiation about 6 yrs ago and several neck of femur fractures as a consequence. I have primary biliary cirrhosis and secondary Sjogren's syndrome. My mother, her sister, and their mother had osteoporosis. I have only been on this site a few days and find it full of help, ideas, links to learned scientific articles, and encouragement to be my own advocate. This last point is so important, I'd like to say it again - be my own advocate. I learned this first as a member of PBC Foundation, which offers the most reliable and up to date information on that rare condition, advocacy, and guidance for self-advocacy. I see that many people here are into this way of managing osteoporosis. I have read a study this weekend about the suitability, in some circumstances, and with appropriate blood testing, that oestradiol transdermal patches have proven to be useful in building bone. Someone on this site has reported having HRT. So I'm thinking HRT is a possibility for me if my exercise and diet don't yield good and quick enough results. I'm also cheered by the thought that HRT can give a feel-good effect. I'd like that. Fatigue and some brain fog, as well as bone and joint pain, are what drags me down and a feeling of life closing-down while I am still trying hard to live it. The increasing experience that a squeezed NHS can try to railroad people into a treatment regime without explaining it fully, and without offering treatment options is somehow the hardest thing to bear, because it doesn't have to be so. Anyway, I love your name, Sunseaandsand, and look forward to reading how you are doing on this journey.
Hi there, Thanks for your reply. I have to say how much I admire your strong attitude on the way of handling your health.It certainly sounds like you have more than a fair share of health issues going on.I have many unexplained symptoms and health issues and unfortunately not had answers to them.When you begin to look back though you can actually start to put a picture together for yourselves.
I now believe a lot of my problems have been caused by the Bone treatments I have received.
It is extremely hard to walk away from treatment when you are sat in a bone doctors office and they are telling you that you are going to fracture and how will you feel if your whole back goes.
I often wonder what my position would be had I not had any of the treatments and the focus had been put on finding out why I was losing bone so quickly.
Since my last fracture I have found it very hard to fight the depression and don't want to go on any medications for that.
My doctor actually agrees that I have too much going on at the moment so to leave it out.
I could actually write a book on my experience of osteoporosis and the treatments so I will try to fit some of it in to my replies in hope it will help others in some way.
I know that diet is very important and I have never had to take calcium supplements maybe I could give tips on that.
Take care please let me know how you are going on, and as for the name well it represents what my life was and in part some of what my life is now!!!!!
Sunseaandsand! Thank you for your lovely reply! After all is said and done about health and illness, the worst is feeling hopeless. We just need to remember that we are not, or wait until the memory that we do have hope comes round the front of the head again! I agree about the doctor's office dilemma! I'm off to my appointment now: if I hear "... survival rate of above 18mos after hip fracture is poor...", I shall just nod and remember that I want to live well, not forever. Be well!! Where's your favourite sea and sand?
Hi again, good luck with the appointment and let me know how it goes. I will go online and checkout the meditation.
Have you tried the EFT basic procedure it works for some and not for others.
Have a look it's something that may interest you.
As for my favourite place.Well I consider myself to have been blessed and very fortunate in the past to have been able to travel and visit other parts of the world. Memories now are wonderful things.
We travelled quite a number of times to Margarita off the coast of Venezuela this holds special memories as we made friends with some wonderful people there, some of whom I am still in touch with.
Owing to the problems with the country and my problems not allowing long haul flights it is a some time since we were there.
The picture on my profile was taken on a Holiday to Cuba somewhere else where woderfull friendships were made.
In England we have some very nice beaches we have the sea but the sun not so very much of!!
On a positive note we have a son who has recently moved to Europe and where we now have an open invitation to stay.
His believe is that the warmth and the sun is far more beneficial than medications and injections.
The beach will be a little difficult but we will find a way around that, as for swimming the best I will be able to manage is to float on my back,
As for the sun there should be plenty of that. So that is my escape plan from Doctors hospitals and injections.
I do have to notify them yet to let them know I am not continuing with Prolia and to put a suggestion forward as where to go next.
I will keep in touch.
For now though take care and I hope life is kind to us.
Your son sounds wise. I know of two people recently whose very serious declining health came back good soon after moving to a sunny place. Both of them had been told that nothing further could be done to improve them.
I find meditation helpful to restore mental balance. Can you check out some online? They can often be free. There are some lovely people guiding meditation on You Tube, from Stephanie Sneider and Eckhart Yoga, just so you could watch and have a free taster!
Hello Sunsaeandsand, and so sorry to hear about the awful experiences you've had with osteoporosis and the medications you've been prescribed for it. Have you come across research supporting the bone benefits of taking high dose Vit D supplements, together with Vit K2 (MK7 or MK4), magnesium and boron? Do you know what your blood Vit D level is? I was told by an orthopaedic consultant to get my level over 75nmol/litre and ideally over 100nmol/litre (others say at least 125nmol/litre), but GPs often tell you your Vit D is fine when it's at the bottom end of (or even below) the NHS "normal" range. My GP said 47nmol/litre was fine until I showed her a letter from the consultant, at which point she happily increased my prescription to 2400iu daily. I now take more than this (currently 4000iu daily, though I'm adjusting this until I achieve a blood level of over 100nmol/litre). Vit D helps your body to absorb calcium, then co-factors Vit K2 and magnesium help direct it to the bones. There have been some concerns about high dose Vit D potentially causing other health problems, but there's evidence that this isn't an issue so long as you take the co-factors with it. Another thing to get checked, if you haven't had it done already, is your parathyroid level, as problems with one or more of the 4 parathyroid glands can cause osteoporosis.
Hi once more.My calcium levels have always been good that I have not needed supplements. As for vitamin D I take a supplement, and whenever the sun shines it shines on me.
Also I have been fortunate enough to travel to sunnier climates several times a year for long stays.
As a result of this my Vitamin D levels are also as they should be.
At least that is what I am told.
I do not know my levels as being told they are good I have never bothered to ask.I only ask the questions about the not so good things!!
Yes I have had the Parathyroid checked many times by different doctors.
I had my first scan age 49 years old and was borderline Osteoporotic.
Second scan 3 years later my BMD had decreased 10% in Spine T score was now -3.4. My Hips had decreased by 5% T score was now. -2.6.
No reason was found for the sharp decline.
I then had a 3 year course of Bisphosponate injections stopped due to very bad side effects ( at that time it was recommended 5 years then have a drug holiday)
Two years later I had my first spinal fracture which was suspected to have occurred through coughing.
When you have a little time perhaps you may like to read through my other posts.
Take care and thank you for your nice wishes.
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I agree about the doctor's office dilemma! I'm off to my appointment now: if I hear "... survival rate of above 18mos after hip fracture is poor...", I shall just nod and remember that I want to live well, not forever. Be well!! Where's your favourite sea and sand?
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