Hello. I am new to the forum & have just had a stomach churning T score on my hips! Previously -2.0 five years ago I had managed to reverse a -2.6 from 5 years previous with no medication & just exercise. I have just got my latest score of -5.4 on my hips - a decress of 170%! I am allergic to a lot of medication , well most. This has really panicked me!!! Has anyone led a normal life on such a low hip score, (spine 3.3 so better)? without medication? I feel awful & panicked. Do I stop walking & gardening? Thanks
Not sure if you are eligible for this but there is a yearly infusion that I am going onto in November as Denosumab has not suited me. I am told the infusion only causes headaches or flu symptoms for a few days for some people and does not affect your stomach and lasts a whole year. Maybe you can ring the nurses here and get some advice about it or other treatments?
Oh thanks. That’s good to know. Because hips -5.4 I will have to have the re-build jabs first but good to know that there is an infusion out there that doesn’t have main symptoms as stomach/acid upsets, osteonocrosis of the jaw & hair loss! What is your new infusion called please? Thanks 
It’s called zoledronic acid. It’s advised for me as I have pancreatic insufficiency and acid reflux and the denosumab six monthly injection for osteoporosis seems to have caused severe stomach issues, though speaking to the nurses here they have not come across those side effects, and I only read it on google AI that is causes diarrhoea and tummy problems for months. It can cause the osteonocrosis of the jaw though. Not sure if it causes hair loss.
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My sister has terrible acid and she had the infusion but was fine stomach wise. She just had flu like symptoms the next day but by tea time she felt lots better.
Don’t worry you’ll be ok.
Hi Mermaid,
Wishing you the warmest welcome to our community 
It sounds like it has been a very worrying time for you recently, and it’s understandable to have lots of questions about your next steps.
We warmly welcome you to get in touch with our helpline of specialist osteoporosis nurses who can chat through your situation with you.
There have been some important topics raised in this conversation. If anyone would like to learn more, we have information and videos on our website about osteoporosis treatments and medicines, including information about rare side effects.
We also offer a free digital service, BoneMed Online, which provides tailored information and support about your osteoporosis medicine.
Please do keep reaching out here. Having support and understanding around us can make such a difference in our health journeys 
Wishing you all the best,
Lulu
ROS Moderator
Hi Mermaid
So sorry to hear what you are going through. I’m no medical expert but with such a high T score I would think you would need one of the anabolic OP treatments such as Terapatide or Romosozumab. They are both injections which are subutaneous so should not affect your stomach and build bone. Once you have finished these you may need the yearly infusion which appears to be normal route. This will lock in the gains made from the anabolics. Probably not a good idea to stop walking or gardening because any form of exercise is good for bone health. If you haven’t already it would be good to get referred to whoever deals with OP in your area. In mine it is Rheumatology and I saw a Consultant there before going onto any treatments. Mine check bloods i.e. bone profile VIt D, calcium and kidney and liver functions prior to treatments and my GP also does some checks every 3 months. Also perhaps one of the specialist nurses at the ROS can help they are really good. I really hope you manage to find out why your T scores have risen so much when it appears you are active. Could it be something simple like Vit 3 or Parathyroid? Wishing you all the best
Thank you for that. Well the strangest thing of all is that medically your spine is robbed of density before hip so to have a decrease of 17% on spine and decrease of 170% on hip doesn’t make sense!? Wonder if anyone on this site has had an error on the reading through movement or unclear pictures etc?? The second drug you mentioned is that the same side effects as the teraparatide or is a completely different thing? Thanks
Hi Mermaid. There has been mention that if there is a big difference in DEXA between spine and hip then this is likely to be an error. Not sure if this is true but in my case they had to miss several vertebrae when they scanned because they had rotated. With this and also that I am very small framed it was very likely that my DEXA scans were not correct. The first treatment I chose was Romozosumab/Evenity. This is monthly injections and for 1 year only. I chose this option because I wanted to improve my bone density first before going onto a follow on treatment. On researching and speaking to other this treatment and also Teriparatide seemed to give best results. Teriparatide is given for 18 or 24 months. The reason why these 2 treatments are only available for these times is because these are the times they have been clinically tested for. Of course this may change in the future once future trials have been concluded. I was a suitable candidate for Romosozumab because I didn’t have any heart issues and so the Consultant was happy with this. After these treatments they recommend a Bishposphate follow on. This is not strictly necessary because unlike Denosumab there does not appear to be evidence that you will suffer rebound fractures if you discontinue. They are used to continue to prevent fractures and lock in the benefit of the previous treatment. I chose Zoledronate infusion, which is a Bisphosphonate because I wanted to bypass my stomach (have issues) so this seemed best option for me. Of course some people may start on Zoledronate as their 1st treatment. I suppose this depends on the severity of their OP. As far as I am aware all of the treatments have risks associated. Some appear more scary but those are rare and preventable/treatable. For example, with osteonecrosis of the jaw I deal with this by maintaining good oral hygiene. Making sure that I have 6 monthly check ups with dentist where they Xray to check bone health and visit hygienist every 3 months. As for the fracture of thigh bone (atypical fractures) risk of this occuring increase the longer you take the treatment. However, more research is needed to confirm this. To help with this there are times when you might be able to have a pause in treatment. This is why I chose Zoledronic infusion because research shows that the treatment continues to keep working for several years after stopping and does not cause rebound fractures. I have accepted that I may have to take treatments for the rest of my life (hopefully with a few pauses in treatment). However, if this helps to prevent fractures I will do it. I hope this helps to answer your questions
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Thanks for all that great information, much appreciated. The doctor called I had this afternoon was waste of time because I think I knew more about osteoporosis and treatments and errors in scans than he did! Rheumatology next. More specialised. Will get answers to my questions and longer to chat through treatment options