am I dying severe osteoporosis

[Radars]

I have severe osteoporosis with on and off back pain, I am waiting from hospital regarding treatment waiting list is months, I could be dead by then,with severe osteoporosis got to be careful with what exercises I am a bit worried, anyone similar.

[Kaarina]

Hi Radars

I think you could do with chatting to someone and I suggest that you call the free ROS helpline after this holiday period is over. Talk to a specialist nurse 0808 800 0035.They are closed now until 3 January 2023. Try not to worry, they will be able to advise you what is the best course of action for you. I hope you have something prescribed for you to take for the intermittent back pain.

[Radars in reply to Kaarina]

No nothing for back pain just rest till it goes off,supposed to be going for a dink today, hope alcohol will be ok. I also get a bit breathless when I go for my daily walk.

[Kaarina in reply to Radars]

Be gentle on yourself on your daily walk. Enjoy your drink today. Sure a small tipple will be fine. Merry Christmas.

[MyStar86]

I’m 36 and I’ve had osteoporosis since I was 29 I’ve had a broken hip and fractured all my ribs in multiple places which is horrific pain something I will never be able to explain. I was put on Zoledronic acid infusions last year and I am due another one soon but I’ve delayed it due to how sick it makes me for ages. The gp is not good at offering pain medication for long term conditions i had strong meds with I had the breaks but long term nothing and the back pain is horrific. I was referred to a private pain management specialist as the nhs side was a load of rubbish in my eyes so I’m waiting for some new meds now which I I’ll be able to take long term for the pain as I have multiple health conditions as well.

You need to talk to a rheumatologist first to check if you have an fractures etc. when was your last dexa? Are you not on any osteoporosis medication? Maybe see if you can see a pain management specialist they are a million times better in my eyes.

Drinking won’t help with the pain as it can add to inflammation but it’s Christmas so do whatever makes you happy.

Take care xx

[Radars in reply to MyStar86]

I am waiting for hospital to get in touch regarding treatment, it will probably be zoledronic acid as I can't take oral due to my hiatus hernia I take lansoprazole 30mg that's not good for absorbing nutrients.

[MyStar86 in reply to Radars]

Zoledronic acid doesn’t help with the pain in fact initially it makes it worse just to warn you you get horrible bones pain and sick for about 4 weeks I’ve been in anti sickness ever since my first infusion but it definitely does not help with the pain x

[Radars in reply to MyStar86]

What about denosumab

[Met00 in reply to Radars]

If you start denosumab you have to have an exit plan, as you can't stop it without going straight onto another osteoporosis medication (almost always a bisphosphonate like Alendronic Acid or Zoledronic Acid) in order to reduce the risk of rebound fractures. Without being certain that zoledronic acid suits you, it would be best to avoid denosumab.

[MyStar86 in reply to Radars]

I’ve only ever had Zoledronic acid due to my bowel conditions and it does suit some people but try searching it on here and you will see others experiences. The rheumatologist will not tell you what those on the medication will tell you. I was told I would get mild cold symptoms for a few days that’s literally all I was told no warnings about the bone pain after or the other side effects many suffer.

However all osteoporosis medications come with side effects the pain of so many fractures is what pushed me to take it because on balance I can’t go through those breaks again. One year after using it my spine had improved massively thanks to the Zoledronic acid. My hips were still as bad at -3.3 but the fact it helped the spine is why I will stick at it however I was meant to start the 2nd end of October but have been delaying it as I’m so scared of all the side effects again but hopefully I will in February.

Good luck

[FearFracture in reply to MyStar86]

I had one dose of zoledronic acid in November 2021 and have be approved for another dose since November 2022 but I have not decided yet whether or not I want to try another infusion. My BMD didn’t improve significantly after the first dose and although I didn’t have any major side effects, I am concerned about long term problems down the road which can be caused by zoledronic acid.

You mentioned that your spine “improved massively” would you consider sharing how much it improved? I’m very interested in knowing what others on the same meds are seeing in terms of % increases in BMD and/or T-scores.

Another reason I’m considering not having another infusion is that I now know I can tolerate the zoledronic acid, and my doctor said one should only have 2 or 3 infusions to try to prevent long term side effects (ONJ and atypical femur fractures, etc). If I need to take a different osteo-med in the future, meaning a drug that requires a follow-up drug to prevent rebound fractures, it will need to be the zoledronic acid and I don’t want to exceed the 2-3 doses my doctor said was the limit.

[MyStar86 in reply to FearFracture]

well it went from -3 to -2.3 which means my spine is not osteopenia (the only area that is) but for me that was massive as I’ve been scared of the crumbing spine since my osteoporosis diagnosis. The fact my hips didn’t change is odd but I was and am happy about the spine.

Why would you not have an infusion if you didn’t get side effects? What are the longterm issues with Zoledronic acid? My doctor told me I would have 3 infusions one per year the see how things were but my understanding is you have to have a break from the infusion after 3 anyway…..please share the longterm side effects as now I’m even more worried however I’m delaying till February as I had to have surgery in November so I couldn’t do it then and now I’m just putting it off due to the side effects scaring me as I don’t want to get so sick or in even more pain again even tho I know whenever I end up having it I will suffer.

Thanks

[MyStar86 in reply to FearFracture]

sorry that’s meant to say my spine is NOW osteopenia my phone changed it to not so I hope that makes sense my spine is osteopenia not osteoporosis now thanks to the infusion but the rest didn’t change and is still osteoporosis.

[FearFracture in reply to MyStar86]

Thanks, a change in lumbar t-score from -3 to -2.3 is awesome. The change I saw after 1 year/1 dose of zoledronic acid was from a -3.7 to -3.6. In terms of actual BMD change that is less than a 1% increase in BMD and anything less than 3% is statistically insignificant. My endocrinologist failed to do any bone turnover marker tests prior to putting me one meds so he wasn’t able to test my bone turnover markers 3 months after the infusion to make sure the zoledronic acid was having the desired effect. Therefore, I have no way of knowing if the small improvements seen between my July 2021 scan and my December 2022 scan are due to the zoledronic acid, my diet/exercise changes, or if they aren’t even real—DEXA machines aren’t all that accurate.

Someone on this site pointed out to me that it is unusual too see big gains in just one area because bisphosphonates should sort of “help” all over, meaning they don’t target just one area. Additionally, spinal compression fractures can increase BMD because they make the bone appear more dense when it’s really not. Unfortunately, too many doctors fail to explain any of this to their patients.

The long term side effects of bisphosphonates, that I’m aware of, are ONJ and atypical femur fractures. I’m not trying to scare you or anyone else out of taking osteoporosis meds but it’s best to be aware and make an informed decision.

I’m not saying that I will never have another infusion but given that my improvements were insignificant for such a serious med and that I am still young and healthy enough to attempt to keep my bones as they are and possibly improve them via diet and exercise and given that according to some studies bisphosphonates reduce both osteoclasts (breaking down bone) and osteoblasts (building bone), if I want to try to increase my BMD via exercise the bisphosphonates may be doing more harm than good.

[MWZ3]

I’d be more worried about your advanced prostrate than the osteoporosis.

[dog45678]

Sorry to hear of the amount of pain you are dealing with. A possibility you have some compression fractures as osteoporosis itself does not cause pain. Having a drink won't do you any harm, but as always, take care when moving about as it often affects balance.Margaret Martin MelioGuide is an excellent source of information with great videos too. melioguide.com/health-guide...

Sending strength and support ❤️

[ROSModerator Partner]

Hello Radars, thank you for posting here, and glad to see you've been getting support from other members of the forum.

It can be frightening to be told you have osteoporosis and sorry to hear you're in pain. Osteoporosis doesn't increase your risk of dying but it makes you more likely to break a bone which can cause pain. We have some videos all about osteoporosis for people newly diagnosed here on the ROS website theros.org.uk/information-a...

As others have said, on 3rd January you can call the specialist nurse Helpline on 0808 800 0035 to talk through your situation and get some support. We'll send you a private message with some other places you can get support over the Christmas period.

Take care and best wishes

ROS admin

[fraid]

Sorry to hear your woes.I would definitely get pain meds sorted out soonest. Enjoy your drink but be very careful, even a slip can damage your fragile bones. I think most of us feel we’ll be dead before we get a hospital appt. these days! I tried a choose and book so got one earlier than NHS, but he was absolutely useless! It’s pretty much DIY these days & nag your doc till you get what you need meds wise. Merry Xmas & good luck! X🧑‍🎄

[Radars in reply to fraid]

regarding meds,I am waiting to start zoledronic acid after I have had dental work, but people on here not to have it because of horrendous side effects.

[HeronNS in reply to Radars]

All drugs have side effects and what doesn't work for one person may be fine for another. Read up on all the possible meds, although I second the caution against denosumab or its younger sister, romosozumab (Evenity) as there's no turning back from bone meds once you start either of those. Teriparatide is another drug which needs to have its improvement "locked in" with another bone medication after a two year course, and it is also considered helpful for the spine. I haven't heard that it's subject to the same risk of rebound osteoporosis which occurs too often when denosumab is discontinued.

Read my story for a few ideas. As you feel you are particularly fragile you should not start any new exercise without medical advice (maybe a good physiotherapist can help). My local hospital offered a sort of "workshop" for people diagnosed with OP and I found the session with the physiotherapist the most helpful as she gave us instruction on how to move in ways that protect the spine.

And hopefully your doctor has tested you for all the "secondary causes of osteoporosis".

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

[FearFracture in reply to Radars]

I’ve only had one dose of zoledronic acid. The side effects I experienced within the 1st few wks of having had the infusion were very mild. My infusion was in November 2021 and, to date, I have not experienced any major side effects.

My DEXA results are posted in a link under my bio if you want to see my results—my bones didn’t improve significantly after the infusion but I also have Hashimoto’s hypothyroidism and I starting to wonder if that might have something to do with it.

The one thing I highly recommend you do before taking any osteoporosis-meds to to make you doctor order blood work to check your bone turnover markers so you have a baseline and to make sure the osteo-meds being suggested could help improve your bones. Then, if you choose to take osteo-meds, about 3 months after starting treatment, rerun the blood turnover marker tests to make sure the drugs/treatment is having the desired effect. My doctor failed to do this and it’s left me with a lot of unanswered questions.

[Valerie0106 in reply to Radars]

you have had it already if my memory serves me?

[fraid]

I declined it as well re side effects, want to feel better not worse! But you still need pain meds surely?🧑‍🎄

[brettnmi]

I know that horrible pain from oteoporosis. Fozinex once a week took care of it for me. Hope you find something that works for you

[Mavary]

Hi I’ve got very bad Osteoporosis and I hope I’m not dying yet.:I had it for years and didn’t know it. When I had my first Dexa scan it was minus 5.5 and my hips were minus4.3. I’ve now been on treatment of Terraparatide first and Denosumab after. My last Dexa scan was my spine minus 4.3 and my hips are minus 2.8 I think. So a big improvement. If you have been told you need it treated I would talk to your Dr first and if he can’t help perhaps you know the name of your consultant and you could ring and ask them when you are going to be treated. I have had seven spinal fractures a broken foot and a broken hand. I’m still here. Just be very careful until you do get treatment.

[Radars in reply to Mavary]

It's the breathless when going for my daily walk up inclines,and the back pain.

[Mavary]

is that because of the osteoporosis or have you got lung problems.?

[Radars in reply to Mavary]

Because of osteoporosis

[Mavary in reply to Radars]

sorry I don’t understand. Why are you dying of Osteoporosis? I’m not very knowledgable about it so you’ll have to forgive me. If I don’t ask questions I won’t know.