Progress report after two years on Forsteo and ongoing treatment

[MollyStark]

I have just completed my two year course of Forsteo. My latest DEXA results are below, along with my two previous DEXA results for comparision. All done on the same machine.

11/07/2022 Spine (L1 - L4) -4.1 (23/08/2019 -4.4) (03/03/2014 -3.6)

11/07/2022 Total Hip (Left) -3.2 (23/08/2019 -3.5) (03/03/2014 -3.1)

I have had a 4.6% improvement in my spine and 6.5% improvement in my hip when compared to the 2019 results. Forsteo was started in October 2020. I had no side effects from Forsteo apart from initial nausea.

I have had three confirmed spinal fractures (T8, T9 and T11) the first in 2019, two more in 2020, and currently awaiting results of x-rays to confirm another spinal fracture in the upper thorax region - although I have been waiting 5 weeks for that result, despite chasing them every week!

It was decided by the MDT (multi disciplinary team) to start me on Denosumab for 5 years as a follow on to teriparatide and my first treatment is booked for 10 days time.

I am disappointed with the results, I had hoped Forsteo would give me a greater improvement, especially as it is one of only two treatments which build 'proper' bone. I am now concerned about my ongoing treatment. Due to my age (59) I need a long term plan. Before the results from the latest DEXA scan, the specialist osteoporosis nurse at the hospital seemed rather positive and cited 15% improvement in several of her patients. Since my results she has not bothered to call, despite me repeatedly asking for a consultation (they only do phone appointments now!)

I have written countless emails to the department, all are either ignored or fobbed off with a reply saying 'when we have the results of your recent x-ray, we will talk to you.' The results of the x-ray are beside the point, fracture or not, I would really like to know what the long term plan for me is before I start Denosumab. I have spoken to a ROS nurse who advised me to ask the rationale behind the decision to prescribe Denosumab at this stage.

I thought I would share my results and would be interested to hear from anyone who has been on Denosumab for a long time, particularly any of you who may be 'young' to be in this situation - as I am considered, apparently!

[dog45678]

After taking the meds, I am sorry the results are not what you had hoped for. At times I feel we are not given the 'whole' picture.There are options to investigate before you feel you have to agree to more meds.

Low Intensity Vibration is one. Mybones.health MelioGuide (Margaret Martin) has fantastic exercise, suggestions and easy to follow videos too.

All the best.

[mHettyR]

Hi Molly,

I was prescribed Alendronic acid (a biphosphonate) but decided not to take them and am taking HRT adcal and doing resistance training to improve my bmd. I will have another rem scan in a year to see if this has been effective. I would be interested to hear why you were prescribed forteo instead of biphosphontes. Best wishes.

[MollyStark in reply to mHettyR]

My bone density is very low and and I am classed as having severe osteoporois. Having had fractures, the alendronic acid would not give me proper protection. Also, I have digestive issues so I couldn't take them if I was eligible. I hope your plan works for you. Sadly, I cannot do resistance training due to my fractures and the permanent pain.

[mHettyR in reply to MollyStark]

hi Molly, I’m osorry to hear you have permanent pian. Many thanks for your kind advice, sorry I took so long to reply. I hope the improved Dexa scores mean that the Forsteo is having a positive effect, albeit slow, and hopefully your bmd will improve and your pain will subside eventually. I did read somewhere that Strontium was supposed to be better for spine bone building, have you read that? Best wishes x

[MWZ3]

Gosh, that’s sad for you at that age. You won’t be able to just go off that drug. I’d certainly be wanting more information and advice.

[MollyStark in reply to MWZ3]

I would just like to hear exactly what their plan is and if they don't have one because of my age and situation, I would rather hear that. Hearing from people who started on Prolia when they were my age, and have been on it long term, would be encouraging.

[MWZ3 in reply to MollyStark]

I haven’t been game to take it. None of them seem safe to me. I’m in a quandary.

[MWZ3]

you can’t be on prolia long term without risking rebound fractures