I have been reading a lot on here about people who have had medication and are in immense pain with fractures, one minute they are ok walking about and the next they are using crutches or confined to a wheelchair, I am t12 myself 4.1 lumbar spine, when I have to suffer like a lot of people on here I will not want to be here anymore or to be a burden to anyone what's the point.
what's the point of osteoporosis drugs - Bone Health and O...
what's the point of osteoporosis drugs
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Radars
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I wish I could help you but I’m sending you some big hugs and I do understand the pain makes you want to give up but it sounds like you have been through so much and kept fighting with prostate cancer so don’t give up yet it sounds like you need to see a pain management specialist as that might help you a lot if you are not in so much pain, that’s what I’m doing as I can’t cope anymore either so I’m hoping they can take some of the suffering away and enable me to do more.
Take care and keep strong as I don’t know you but what you have been through and till fighting shows you have something to fight for so don’t give up xx
I don't think he's suffering yet, just saying that he doesn't want to have pain but thinks he will eventually despite the drugs.
hope you are a bit better, I thought you were doing ok with zoledronic acid infusions, are you in hospital hope you get the pain sorted.
I had bowel surgery a few weeks ago and now have an ileostomy but being in hospital for so long has destroyed my back and also the surgery as they cut through the stomach muscles so much back is in bits. The pain is horrific it does feel like I’ve done something to my back so my gp has sent for a thoracic and lumber spine xray which I have on Monday! Yesterday was just a tough day as I had to travel an hour to the hospital for a check up with the stoma nurses and the car is the worst thing possible for my back. I am worried about my back I used to walk loads every day but now I can barely do anything without my back falling apart on me it hurts sitting, standing and laying 😞. I have the pain management specialist at the start of December as the gp was useless she just put me on codeine which isn’t touching it so hopefully the pain specialist can be more helpful.
I hope you are doing ok as your post worried me I know you have been through a lot so I don’t want you giving in yet that’s why I thought some pain management might really help you feel more capable. Take care x
you are going through a lot at your age one thing leads to another, at the moment when I get up on a morning it takes a while for my back pain to come on,then when I sit down it goes off,when I last saw a gp she has referred me for asthma and copd check couldn't believe it, they don't know much regarding severe osteoporosis, I haven't got asthma or copd.have to wait for a spinal x-ray, it's hard work.
Do you take any pain relief? It’s good that you get some pain free time in the morning as mine hurts even when I’m laying down in bed and it’s a real stifle to sleep. That’s strange of your gp I just told mine that my back hurt and she requested the X-rays straight away nothing to do with asthma or copd. Do you have a cough or. Bad chest for the gp to go down that route? I hope you can get some help soon but I would suggest the pain management if you are really suffering then you will feel more capable and less worried about relying on others x
hi,how are you doing, have they got on top of the pain yet.
I’m doubling up on the codeine trying my best. It’s not easy but thank you for checking I have the pain management specialist on the 4th so I’m hoping they can help more as codeine isn’t ideal. Just had my X-rays today so I should get the results this week. I know the man who did it and he said it looks like compression fractures of the vertebrae but will wait till I get the report through to my gp.
How are you getting on I hope you are ok xx
thankyou, good luck hope you get sorted.
I hope so too as I don’t think they can do anything about compression fractures 😞 however hopefully with some good pain relief I will be able to get some rest and actually recover from my surgery as I’ve got some complications from that which I’m already struggling with so it just seems like too much to cope with at the moment.
hi,are you any better with the pain
No it’s really bad I’m so scared I’m in agony 😭 I think now I have the ileostomy I’m not absorbing the codeine as I’ve taken around 8 today and nothing one used to make me sleepy and help but now I’m not getting any relief and my guts have gone mental so all the cramping is making my back sooooo much worse this is all pushing me over the edge.
I have a pain management specialist later so I’m hoping they can do something with patches or anything because whatever is going on right now isn’t right if I was a normal person I would go to a&e but I’ve had such bad experiences in the past I can’t do that so I’m trapped in a nightmare just wishing I could go to sleep and only wake up when it doesn’t hurt anymore.
I hope you are ok x
sorry to hear you are suffering, if my back pain gets any worse I will be off to a/e,at the moment my pain goes off when I rest thank God,hope things get better.
Thank you and I’m glad you are able to rest that makes all the difference! I have spoken to the pain management specialist and they have prescribed me Buprenorphine patches and pregablin he is sending an email to my gp to do it urgently so I’ll be calling them tomorrow!! He is also requesting and mri of my spine to see it in better detail vs the xray and then when my pain is under control I will go up to London to see him for an exam and a detailed mri of the back and abdominal area where all my pain is to try and find the cause of all my issues as he said it’s such a specialist scan it’s only done in a few places in the country. I feel happier having a plan and hopefully getting some relief once I get the doctors to prescribe the new meds as that’s what I need to stop me losing my mind!! He said if these patches don’t help then he will swap to the fentanyl ones but wanted to try these first as they have less side effects and less addictive so hopefully they help but I’m happy to know there is a back up plan.
yeah, it's good to know that something is being done, pain changes everything, once they get that under control you will be a lot happier, it's hard for you because of other issues, good luck. ×
Oh radars thank you so much that truly means a lot to me as I know you have been through and going through a lot yourself so thank you for taking the time to message me and to care as it is scary suffering alone. Yeah my bowel issues definitely make life very difficult but at least I have some hope now with the pain relief then I might start to feel more like me again.
How are you getting on? I hope you are ok. Take care and whilst I may be broken I’m also always here x
thanks, I have a gp appointment face to face on Thursday I am going to tell him that I need a spinal x-ray to see where I am, don't you think that the zoledronic acid infusions you had have done anygood.
Good luck with the doctors I really hope it goes well and they action the spine xray for boy as it sounds like you need it done asap. It’s a tricky one with the infusions as I thought they had helped because on the infusions my spine is now just in the osteopenia range and it was way into osteoporosis like my hips at -3.3 but with these fractures I don’t understand I’m very confused. Good luck for the doctors x
I just wanted to wish you good luck for tomorrow I’ll be thinking of you. Let me know how you get on. I really hope it all goes well x
thanks, I will get a referral for a spinal x-ray because of my back pain, while turning over in bed last night I got a sharp pain in my lower back made me go ah not to bad today like you say it's confusing, are you ok today are you getting about.
Make sure your GP states that you have osteoporosis when they do the xray request as they can reject the lumber spine ones as they did mine but I knew the radiologist so he went ahead and did both the thoracic and lumber for me so just make sure they do put osteoporosis and fracture risk on the xray request form so you don’t get any issues. Sorry you had a bad night but I’m glad it wasn’t too bad for you today so fingers crossed for you tomorrow I really hope it goes well and the don’t give you off with copd or asthma stuff this time.
I haven’t been good today I’ve really struggled as my guts are so bad all the cramping and hell I went through in the night made my back so much worse today, it very tricky trying to cope as I know it’s my tummy making my back worse. I managed a little walk but the pain kicked in whilst I was out which made the afternoon very painful. I’m just hoping I hear from the pain specialist secretary so I can actually get my gp to prescribe the new medication. I’ve sent the mri request to my local Nuffield and they are happy to do it so hopefully I should get an appointment for that next week and that’s for the full spine.
I don’t feel like I’m 37 😔 it’s very scary I wasn’t great before my surgery but I used to do two long walks every day which I loved but now I can’t do anything without being in agony. I have been to some dark places feeling so lost with the pain but I’m trying to keep hope alive that if they can sort my back out and I get the pain under control then I can actually get myself stronger and it might ease my guts as well not having to take stupid codeine.
I really hope tomorrow goes well for you and you get a better gp this time round but really lay it on thick about how much it hurts I know you are doing ok but they will take it less seriously if you tell them you are doing press ups and things like that so don’t say too much about how active you are as they might not pass it off which you don’t want any these gps are not always the kindest so I wish you all the luck and I really will be thinking of you x
thanks for the bit of information regarding x-ray, I don't do pressups now bit dodgy for spine, wall pressups instead bit more gentle, I will ask gp to get in touch with physiotherapist for some exercises I can do at home, didn't go for my daily walk today a bit slippy can't do with a fall now. I know why I get a bit breathless compressed disc's that reduce lung function.
That’s ok my mum is a radiologist so I know the system a little bit and the experience I had with my xray being cancelled so hopefully your gp will be on the case but I know you will be so I’m sure it will be fine.
Sorry you didn’t get your walk but I’m the same if it’s slippy I wouldn’t risk it at all as that’s one of my biggest fears.do take care tomorrow I know I have heavy rain all day here tomorrow but that’s better than ice.
You poor thing it sounds like you need an mri really to understand the full extent but the xray is a good start so fingers crossed. Keep me posted x
Good luck today!! Let me know how it goes 🍀
I have managed to get my MRI booked for this Saturday so that’s something at least and I’ve sent my prescription request to the gp so I’m waiting to hear back from them just hoping they can do it before the weekend but that’s asking a lot as I know how crap my doctors are so it would take a miracle for them just to action it without any issues.
well done, I just got back from gp,it was hard work to get him to refer me because a spinal x-ray involves a lot of radiation I said I need to know regarding fractures to see where I am I didn't know that it was dodgy. also a bone profile and a urine sample, also a psa test regarding my prostate cancer.
Did you manage to get them to send for the xray in the end? It is a lot of radiation that’s why they cancelled my lumber but with the osteoporosis and previous fractures they did it for me. Have you had previous fractures as that’s usually how they can push one through? However if they are that worried about radiation they should send for an mri as they are better and not radiation so not the same risks….. however I don’t know if they gp can do the referral some can’t. At least they are checking things but bone profile bloods are not that useful however at least they are trying to check things but I hope you managed to at least get the xray as the others won’t help re fractures x
yeah I will be going for a spinal x-ray next week ,I need to know if I have fractured I probably have with the back pain,it is thoracic and lumbar spine, he said even without x-ray it won't make any difference of how I get on,I mentioned mri scan and he said do this first, also 1×urine monovette tube never done that haven't got a tube.
That’s weird the doctor should of given you the tube to provide the sample…..maybe you could call the doctors and ask the receptionist as you will need it to give them the sample or usually they could of more simply done it whilst you were there with them.
I know that’s why they don’t always bother with spinal xrays because in their eyes osteoporosis fractures are stable so they don’t require surgery but they have such limited knowledge and knowing if you have the fractures is vital because you need to be careful the mri would show more clearly the age of the fractures and if they are stable etc but get the xray done and then hopefully you can push for a referral if they won’t do the MRI. I got the mri via my pain management consultant and that was private so that’s why mine moves quickly but now I’m just having to wait on the doctors for the medication but it’s been passed on marked urgent so I really hope they do it without causing hassle as they can’t really question a consultant but who knows.
When do you have your mri booked for?
thanks, I will call at the surgery tomorrow for a monovette,I asked regarding mri but he said do spinal x-ray first then go from there, I haven't got a mri booked, do I give the urine sample to the gp receptionist.
Yeah I think so but when you call for the tube you can ask and check with them but they usually take the samples or have a box there for people to put them in. When have you got the xray booked for? I hope it is helpful and gets things moving for you good luck
x-ray next Tuesday, also blood test,for bone profile and psa check and u&e
Well fingers crossed for you I really hope it all goes well!! Are you in a lot of pain? Sounds like you are doing well coping with it all, I wish I had your strength but I guess I have too many things going on with my body for me to cope with
my pain gets worse after doing things around the house and goes off when I rest but I know it will get progressively worse with lumbar spine 4.1 and superior end-plate deformity at t12. yeah you have been suffering I hope you get your pain sorted I try not to take any pain killers more side effects, but if you have to take them you have to because pain changes everything.
How did they diagnose the deformity? I’m glad you can cope without pain killers and resting helps ease the pain that’s really good I wish I didn’t have to take them as they are making my tummy hurt worse but hopefully the patches if I ever get hold of them will be better. I’ve really had enough today just been crying my eyes out it’s too many things I can’t take much more if It wasn’t for my mum I would of given up by now as this battle is killing me my body is telling me it’s had enough with everything falling apart and hurting but you don’t need my issues.
don't know regarding the deformity maybe curve in my spine, I can believe what you are going through do you have to stop in bed or can you get up and watch tele,on my daily walk the other day I was talking to a 92 yr old woman walking with a Zimmer frame and she has had osteoporosis for donkeys years no exercises or nothing which she said she should do, it effects nearly everyone different some people don't get a lot of pain. bet your mam is upset with it all.
I do spend a lot of time in bed as sitting is agony for me with both my tummy and back……life was differen before the surgery I had to have lay downs but I had two long walks a day and would travel on the train from Bournemouth up to London to see my consultants loads I went over 30 times in the past year and even travelled back after surgeries I was very independent but now I’m just in so much pain. My back did struggle but only took codeine for the train trips to London and one would get me there and one would get me back but now it’s a whole different world and I hate it I’m so scared just sitting on the sofa leaves me in tears I have a position I can semi sit in but more than 30 mins and I’m screaming out in pain 😭. I need to have another procedure for my bowel but I know my back won’t take it so I’m seeing my surgeon next week and going to ask if he can do it instead with sedation then it won’t impact my back or make me worse so I’m praying he takes potty on me as I am so close to giving up now. I keep trying to have little walks but I don’t get very far I just need them for my mental health as I’ve always been a fitness girl so for me my life is now over. My mum is devastated it’s horrible I hate upsetting those I love but it’s hard to hide the pain even when I lay down it’s more of an endurance I have to do it for my back but with my tummy it’s scary. I will keep trying with the walks but I couldn’t today and it’s been raining all day which hasn’t helped but I wrapped some Xmas presents instead and just tried to rest away the day…..that’s all I do now I hate the days and the nights. Sorry I’m emotional today it’s just too painful and I’m fed up I was up all night in agony I prayed I would wake up to a better day but it’s been worse so I’m just very lost. Sorry I used to be so strong but I’ve lost so much of my life due to my bowel issues and I hope the ileostomy would save my life but instead I’m left with nothing and I’m not sure how to what I’m even fighting for anymore. That lady you met is very lucky
so sorry you feel that bad, was it the surgery you had that caused all the pain there must be something that can make you feel better, something like low dose morphine because when people are in pain Dr's start on paracetamol and work up to other pain relief it's hard, if you just had osteoporosis maybe you would manage better.
Bless you thank you for being so kind but yes it was definitely the surgery that’s ruined me as cutting through the abdominal wall to pull my intestine through it massively weakened my back then I was stuck in hospital for ages to recover and I had to remain on my back and didn’t sleep the whole time I kept saying I’m worried about my back but everyone said oh it’s normal after surgery but I knew It wasn’t going to be good when I left and came off the strong meds. Plus the surgery has kicked off massive nerve pain so it feels like my stomach is burning it’s a horrible pain.
The pain management specialist has written to the doctors requesting me to go on Buprenorphine patches and pregablin for the nerve pain but they haven’t done it yet I keep chasing and I will again tomorrow as it’s getting ridiculous now I had hoped to get it before the weekend as the hour long mri won’t be easy on my back but never mind that’s my life.
I coped well with my osteoporosis I broke my hip in 2012 so I I as only 26 but it was the impact from running as I used to go out every day and it just cracked one day whilst I was running but I went to the gym and strengthened the muscles around it so I kept the bone in the place and didn’t need surgery thankfully but even then I do t remember using much pain meds certainly not prescription but I only had osteopenia then. When I did the ribs that as bad as I can’t have morphine due to previous serotonin syndrome from idiot doctors giving me too many different meds so I just survived by doing very little but I got through it no pain meds but it was hell that was 2020. However since then hive had so many surgeries and lost even more weight so my body and bones are so much weaker now that it’s harder r to cope with.
I will chase the doctors tomorrow and hope I can get them moving on the per. Meds as I’m so limited now but than you for caring 😊 it does mean a lot as I try to cope and battle alone but now I know I can’t carry on like this
yeah, you have certainly been through a lot, when I was in hospital after the zoledronic acid infusion, they were giving me the wrong medication, and 2 nurses on my ward couldn't speak very good English, I asked to see a consultant he apologized .I didn't feel safe.
I don’t know why I didn’t get an alert to your reply! I can’t believe they gave you the wrong medication, what on earth did they try and give you? I’m glad you were ok. I hope you are having a nice weekend and not long to wait till your xray now thankfully. I had my full spine mri yesterday that went well but very painful being flat on my back on the hard surface for nearly an hour I looked in the mirror after and my spine was bright red as they made me take my jumper off and I’m so skinny my spine has no padding but never mind it’s done now so hopefully by the end of next week my consultant should have the results. Hope you have a good day x
Hi,I thought you could wear normal clothes as long as no zips or jewelry, the medication they gave me is what I stopped 2yrs ago for my prostate cancer, on Tuesday I have a blood test for calcium and psa test, urine sample and then spinal x-ray, it's a long time you were in scaner for hope my x-ray don't take that long.
You do but my jumper had a tiny bit of glitter on it so they made me take it off which was really annoying as my top under was only a thin base layer but never mind. Oh wow that’s really bad I can’t believe they did that’s terrible but I’m glad you got it sorted in time but I’m shocked they tried to do that!!
The xray doesn’t take long at all mine was both lumber and thoracic and it was only a few mins some on your back and some on your side but it’s over quickly. MRIs do take ages but it was the whole spine so I think that’s why it was longer. I hope all the tests go well on Tuesday and they don’t take too long to report on the xray as they say 7 to 10 days but can’t take longer so keep a check with your gp or try to book a follow up in if you can save you worrying
Good luck for tomorrow I hope it goes well I will be thinking of you!! Take care and fingers crossed you get some answers xx
thankyou, they say a mri is better than x-ray, I said that to gp but falling on deaf ears.
An MRI does show a lot more, when I broke my ribs the xray only showed 2 fractures but the mri showed I had broken them all in multiple places but the xray only gives a 2D view I think and the MRI is 3D. However it’s best to get the xray done first my gp wasn’t able to request and mri it was my pain consultant that requested the mri after the gp has the xray done so it’s best to start somewhere and go from there. Would your endocrinologist be able to help you as I think you said they put you on the zolendronic acid infusions?
Anyway just get tomorrow out the way and hopefully it will all go well and you can get a follow up with your gp 🤞 x
all done,the gp who I saw prior to the x-ray said that the radiation was high, I asked the nurse who did it and she said it's low,just wait now.
I’m glad it all went well and the gp was wrong what a surprise they are so rubbish I hate them mine was horrible to me last time they just don’t understand or take pain seriously.
I’m struggling big time today swapping over from codeine to the patches as they clearly haven’t kicked in yet as my back is in bits and I’ve stopped the codeine as I have the patch on but if it carries on I’ll have to take the codeine as I can’t handle this today 😭 x
it's not right the going on you are having, and the junior doctors are going on strike again causing more misery. have you tried nurofen.
Thank you I know i feel so scared and alone. I wish I could take ibuprofen but I can’t with my bowel issues so I’m just hoping something will work soon as it’s making me suicidal I’ve lost my life and my body is giving up on me.
Let me know if you get any news have you booked a follow up with your gp?
keep going, if I haven't heard by Friday I will go down to the gp surgery.
I wish I had your strength I really do as I know you have been through so much. I just need to get through Xmas for my parents but this is killing I dread every day and night.
Definitely maybe even Thursday to chase as it might be harder to get an appointment with it being so close to Xmas. Good luck
Good morning, I hope you are having a good week. Have you had any news from the doctors? Maybe try to book an appointment for next week before the holidays kick in as it’s a nightmare to get appointments this time of year so good luck x
hi,just waiting for results, they generally send me a text it's only been 4 days people sometimes takes weeks, but they say no news is good news, after I had the x-ray I said with me getting a bit breathless on my daily walk I said it will be probably compressed disc's that's reducing lung capacity the radiologist agreed, just want to know where I am with fractures.
I’m surprised that they didn’t do a chest xray as well just to be safe if you are getting breathless. Well hopefully you find out soon but it might be after the holidays as a lot of places are running behind. Where abouts are you in the country?
I had a chest x-ray not long ago was ok,I am going down to the surgery today to see receptionist to see if they heard anything, the blood test and urine sample will probably be a bit longer.i am still waiting for a asthma and copd check, all these things I get a bit mixed up, I am in York.
I would as well when they seem to be testing and checking everything which is good but it hard when you have to chase everything to get anywhere. Good idea it’s better to go down there yourself vs the telephone as I have had some horrible experiences with the receptionists on the telephone leaving me upset. Well I hope you get some answers and at least things are moving forward let me know how you get on and I’m glad the chest xray was ok that’s a good start as you don’t want more problems. Fingers crossed for today for you then!
got results of x-ray but they only did thoracic spine did not do lumbar spine mistakes by gps and now have to be referred allover again have asked for a appointment with gp,my thoracic spine is mild fracture l1 with end-plate deformity, don't know if that's good or bad, my blood tests show serum calcium level below range and creatinine level below level, do you think I need a calcium supplement.
I don’t personally take one as they upset my tummy I get my intake from almond milk but I do drink 1liter of it. Have you spoken to your GP? The ones they prescribe have lots of bad things in them I always trust the viridian supplements as they are pure so it might be worth a Google however I don’t take anything myself. I think you should try to get an appointment with the gp to discuss all the results and then ask re supplements because you might only just be below the range so you might be able to do it via diet and a supplement could be too much so it’s worth discussing with a professional and about your spine. Take care and keep me posted how it goes x
thanks, I have got a phone call from gp on Sunday, I am still raving with not getting my x-ray right, I have got to go through a referral again.
I did try to warn about the lumber spine as that’s what happened to me but it’s was only because I knew the radiographer that he did the lumber if it was based on what the gp has put I wouldn’t of got it done they are funny about lumber ones for some reason. On Sunday wow that’s fast and on the weekend the gps must be better up north I’m lucky if I get one in two weeks time down in Bournemouth!!! Hope it’s helpful on Sunday and not long to wait 😊
I have been backwards and forwards from my doctors surgery and the radiology at hospital, my blood test a bit dodgy my serum calcium level is below range, my creatinine level is below range, and red cells below range, I think I will need a calcium supplement, but I have read a lot regarding them been a bit dodgy.
I can’t take them as they always upset my tummy but my mum takes EVACAL D3 is a chewable tablet that contains 1,500 mg of calcium carbonate and 400 IU of vitamin D3 on prescription following her breast cancer and being put on the zolendronic acid infusions like us but her calcium level wasn’t even low and they put her on it saying she had to take it whilst on the infusions because the infusions can suck the calcium out……I was never told this but that’s why she was put on the prescription calcium supplement and she hasn’t had side effects from it.
Hopefully the gp will be able to let you know as they are only on prescription.
I tried adcal-d3 a while ago but had to stop because of constipation, I didn't know that it's best to take a calcium test while on zoledronic acid until recently reading about it, l already take 1000iu d3 and k2 mk-7 200ug, so I will look into getting a good one but I think they all cause constipation.
I trust the viridian brand for supplements as they don’t have any bad stuff in them these are the calcium ones they have viridian-nutrition.com/prod... I tired them and didn’t get constipated but then I got my bloods back and my levels were fine so I stopped the supplements
as much as i comment that the drugs are pointless, they have vital application for some, just have to determine who's mostly at risk,
and which drug(s) and sequence.
and that's up to the specialist, which is a whole 'nother factor.
but re-reading, i see you're asking what's theee point,
and i see you're struggling
on the forum here all our hearts seem to be with each other in understanding
Sad for you. but please remember that most of the people posting complaints are those who had side effects or bad reactions. Those who were just fine are out living their lives and not posting online! So it is hard to get accurate ratings or feedback for these things
how can you get on with your life properly with severe osteoporosis and back pain.
I haven’t tried in person ROS support groups but if you are near any of these local support groups where you could meet and talk to other people.
Does the hospital you deal with have a Fracture Liaison Nurse who organises that sort of thing?
theros.org.uk/information-a...
Or failing that it looks like they have online meeting support groups too
theros.org.uk/support-group...
There are virtual groups as well
I started a reply saying exactly that but deleted it! 
I know people who are fine on Prolia and Alendronic Acid. There are of course some lovely people that are on this forum and other forums even if they are doing ok for the time being as they have researched well and like to give back and help others. Thank goodness they do too. It is on this forum I learned about REMS and I was most grateful for that nugget of information and have now had two of them.
I'm on zolendronic infusions once a year. It is hard to weigh up the risks and benefits. Having osteoporosis isn't nice in itself. I watched my mother struggled with this and with arthritis. She stayed as independent as possible in spite of having little help at the time. She was an inspiration for me, taking an interest in family and neighbours until she died in her 89th year (from cancer). I am hopeful that the medication will slow the rate of my osteoporosis deterioration. So far no bad side effects.
We are all part of community. Interdependent. Sometimes, especially early in life we can give to others through our work, through relationships or volunteer work, and then sometimes we need help from others. There is too much talk about the problems of providing care, which says more about the media thant people generally. I loved hearing about the way communities reached out to help during the pandemic and charity events like children in need tell us that most people in this country do care about those of us who need a bit more help and support.
Pain can be debilitating and it is important to bring it under control as far as possible. Some medications work better than others. I have also found doing gentle core exercises to strengthen muscles around the spine helpful, but my osteoporosis is not severe. I do have pressure on my spine from osteophytes and from lumbar pressure, causing nerve pain. Different medication does bring the pain levels down.
I find having interests in other things helps too. Whether it is photography, writing, reading, being a Dr. Who fan, or being an amatuer quiz fan!
I hope you find some treatment and support which give you hope. x
Perhaps you could give advice to others asking for help. This forum is a two way thing.
Why don't you see a recommended Nutritionist to help you avoid pharmaceutical drugs.
I would like to see a nutritionist but don't know who to trust. How do you find out? Some seem to have their own hobby horse!
My mother has osteoporosis she's 80 . The gp is about to start her on Denosumab but the possible side effects sound horrendous. Is it a bad idea?
Lots of people keep very well on it. The problems start for the very few who are not as you can't just stop it. You need to take something else or you may get rebound fractures
And risk fractures ? Look at the incidences of the side effects first.
I wonder the same myself but as someone here pointed out, people doing fine aren't posting here. My mom is doing great, years of Fosamax every DAY doesn't seem to have adversely affected her, and now Prolia, same. And her t-scores have her well into osteopenia. She was never "that bad" but maybe she would've been without the drugs? In any event, it would never occur to her to discourage anyone from taking them, nor would it occur to her to post her good fortune on a forum like this.
I'm not sure why I'm so afraid if them, but like you (?) I passed over into the pain zone before I even knew osteoporosis was a possibility, never mind had a drug discussion. In my experience, pain changes everything. And, I think even doctors agree there's only so much good the drugs can do once the fracture cascade has started, but prescribing them is at least "doing something" (avoiding lawsuits?)
I am probably going to be getting reclast...after the new year (?) I have read that it CAN help with the pain. I'm at the point where that would be "enough". Less pain would mean I can do my life, can work on the strength and mobility stuff more easily. But it's still a scary prospect. A once a year infusion? Just how much of these chemicals are we assailing my body with at one time? If I already have an auto-immune condition?? NIH study suggests reclast CAN ignite or exacerbate auto-immune conditions...up to 50% in one small study. That's a LOT. My endocrinologist will say the study was too small but I know, almost anything, stress, can trigger a flare-up; I just don't want something new, and if you have one, another is easier to acquire.
So, it IS hard, especially since there's no guarantee it will help with the pain ir even improve my bones.
But doctors want to do SOMETHING, so...it's drugs.
have you got severe osteoporosis, I had a reclast infusion last April, don't seem to be doing my back pain anygood, I am 4.1 lumbar spine and t12 so not good.
I do have severe osteoporosis, spine -4.6. I'm sorry Reclast hasn't helped with your pain. Shoot! See what I mean, though? Not much, apparently, that can be done once the fracture cascade has been started.
I'm now about six weeks out from my one-year anniversary of my diagnosis, with my next DEXA scheduled. I've been going mostly natural, not necessarily by chouce, just how the chips have fallen. I am still holding out some hope that dietary changes, boron, the vibration plate, will have done SOME good. It doesn't feel like I've had any improvement, but would I even know, if improvement was going from very very very severe to very very severe? If I get to -4.1 in my spine (I feel like I actually could see improvement in my hips,) or just don't get worse, I'm going to call that a victory for the natural route. 😉
Have you seen any improvements in your scores? Has it made any apparent difference?
I only have had 1dxa scan Oct 2022 so don't know yet doesn't seem to be any better, the reclast infusion I had was 25th April, from what I have been reading people are still having fractures even after treatment. my scores are 4.1 lumbar spine, the bmd at the femoral neck is 0.593, it says we understand the patient will has not suffered a previous known insufficiency fracture, however vfa shows superior end-plate deformity at t12 suspicious for an insufficiency fracture, so you see that's not good.
I could easily be wrong but I’m sure I have read somewhere that most osteoporosis drugs don’t stop the pain you are feeling.
yeah I've read that an all.
Unfortunately it sounds like it’s true in your case which is a shame.
They are not analgesics
Trying to bring some positivity. My aunt had her first spinal collapse in her early 40s and lost one vertebra after another from then on. At about 75 she opted for surgery to sever her spinal cord, which would leave her paralysed but might bring some relief from pain. After months leading up to this, and being in hospital ready for it, the surgeon failed to show up (possibly their decision not to do this horrific op). She couldn't face going through that again and went back to the drugs. I can't imagine the pain she went through to make that decision. HOWEVER - she lived to the age of 92 and despite pain, continued an active and independent life. In the end I believe it was side effects of her osteoporosis drugs that led to her death (uncontrolled oesophageal bleeding) but since she made it through 50 years with severe osteoporosis, and the medics knew less about side effects then, I'm not sure she would have been better without the drugs. She did absolutely everything she could, followed every bit of advice of the Osteoporosis Society. I now have osteoporosis (at 59 - first diagnosed at 38) and am taking all I can - HRT and Alendronic Acid despite the side effects of both. I am in constant pain but no breaks yet. My aunt would say, take what treatment you can!
thanks, what a interesting story, I am thinking about canceling my next infusion after reading all the stuff about still fracturing after medication, when I go for my daily walk I get a bit breathless I think that's because of compressed disc's reducing lung function but I keep going, I am waiting to have a spinal x-ray, with severe osteoporosis it's hard to know what exercises I can do without doing more damage, after reading your story it gives me a bit of hope.
Do keep hoping! My aunt tried to walk a little every day (just a few hundred yards). She continued to garden, shuffling along on her bottom as she couldn't bend over at all without pain. We used to parcel up compost into small plastic bags so she could put it round the garden where she wanted. I think working so hard at everything kept her going. She was doing academic research (argumentatively) into her 90s. I really believe we can keep trying and that it is better to try than not - but saying that I am not doing as much exercise as I should; it is all so frightening and difficult. Wishing you all the very best,
Just want to suggest that at least those who are not in dire straits (I don't pretend that OP drugs are never necessary although they are too frequently prescribed unnecessarily) have a look at my story:
healthunlocked.com/pmrgcauk...
And also make sure that if you have experienced bone thinning, including if drugs appear to be ineffective, that your doctor has run all the appropriate tests. There are some conditions which must be treated before any OP method, drug or "natural," will work.
osteoporosis.ca/medical-con...
yeah that's good a lot of different ailments can contribute to bone health and falls, I have prostate cancer and my testosterone has not recovered that's why I have severe osteoporosis, Dr's won't give me any testosterone because there maybe sleeping cancer cells, I also have a bit of osteoarthritis ,
Oh dear. I think you are in that position called "between a rock and a hard place". I hope you are feeling okay in yourself, however. All the best. 🍀
yeah am feeling OK apart from some back pain after doing everyday things just hope the reclast works only had 1 infusion last April ,but what I have been reading what people have been saying that side effects get worse the longer you are on it just have to see.
Just remember that it's people with problems who post more on forums. There are probably many folk who are doing well. And it is all about risk asessment isn't it? In my case I figured I was safe to manage without medication, but would I have made a different choice if I genuinely already had serious OP, not just a risk of developing it if I didn't take a med?
Whatever you do, care for your bones through your diet, a few supplements (if you can, Vitamin K2 is very important for sending calcium to bones and is lacking in our modern Western diet, a dentist is more likely to know about this vitamin than a physician), and whatever exercise is safe for you to do (get qualified advice on that if you haven't already). That way, once your course of medication is finished you will already be on the road to generally better health, including the bones. 🍀
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