Dear friends,
Saw my Rheumatologist last Monday to discuss treatment when I end Forsteo. After 15 spontaneous fractures since 2018, he’s decided to do a P1NP blood test. Naturally, I’ve read about it, but my question is, have any of you benefitted or had a change in treatment as a result of what the test shows ? ( I haven’t got results yet)
Thank you and best wishes to you all,
Margaret
Afraid I can't help there but just wanted to say Cripes! 15 #s! Thought I was bad with 6 # vertebra T13 - L5, probably more higher up. So I shall stop moaning about my comparatively minor avalanche. Best wishes to you. And Happy Easter. 🤗🐣
Dear fraid, Thank you for sending me a reply. I’m sure your fractures are just as painful and important as mine. This is a truly wicked disease and I just cannot believe what has happened to me in the last four and a half years and why do some of us have multiple spontaneous fractures?
Happy Easter to you too. Stay safe!
Margaret
I thought I was bad enough with seven spinal fractures a broken hand and a broken foot. They were all spontaneous apart from the hand which I fell on. Fifteen though. How do you cope.
Hi Mavary,
Thank you for replying to me. I guess we all cope because we have to but today I have been talking with my husband about my future. I’m now questioning whether I should be walking and trying to stay out of a wheelchair or whether I’m doing more harm. In January I caught Covid and was very ill due to other conditions. Ever since my endurance has got weaker and weaker. When we called paramedics. he was concerned about my heart. At A&E my Troponin levels were raised and the Covid headache had been so severe, I ‘missed’ a major heart event ( I have INOCA )
My dentist who I have been with for over 20 years says my teeth are devoid of calcium. I Need at least one extraction before I ( probably ) go onto Zoledronic Acid. Have you ever been given advice on walking or standing since your fractures?
Warmest wishes, Margaret
I'm so sorry to hear of all your fractures. Have you tried, or trying, treatments other than Forsteo?Unfortunately I've never heard of this blood test. What is it designed to find?Also, may I ask how you've become aware of spontaneous spinal fractures happening? I have one, apparently, but I have no idea how or when it happened, and no idea how to prevent another one.
Good luck with the treatment.
Hi Ronnie and thank you for your message. I have tried Denosumab (Prolia) in the past. I was very unwell generally while I was taking that. Also, I had a very painful subcutaneous cyst develop on my left lower jaw. This was very upsetting , took a long time to heal and left scar tissue.. I have had Stevens-Johnson Syndrome as a result of taking Diclofenac and to this day have allergic reactions to many medicines which in turn reduces my options for future treatment. The blood test measures bone turnover, so I believe this will be repeated sometime after (and if) I start on Zelodronic acid. My latest problem is that after years of having good teeth and being with the same dentist, I’m now needing dental work with decalcified teeth and extractions needed. I have had my fractures as I have got out of bed, got off the loo or simply stood up from sitting. The pain on each occasion was intense and I’m allergic to ALL painkillers. My spine has cascaded with fractures, wedges and crumbling involved. I lost nearly 4” Just by getting out of bed. I am truly worried about my future. My latest x-Ray shows that I’ve fractured L3 during the time I’ve been on Forsteo. I still seem unable to find good advice on whether to carry on trying to stay mobile. I have always been an active person an really want to continue walking each day. I’m deliberately staying away from wheelchairs but wonder if I’m doing the right thing? I feel this is a very lonely disease and only by ‘chatting’ to others who are experiencing similar days and nights, keeps me sane (nearly!)
Best wishes to you Ronnie.
Nerve conduction test on my legs. Electromyography.
Blood test at orthopaedics?
Bone Density Test
