This is an update and a thank you really, as well as info for others. Last time I posted I was puzzled about back pain. Later after a scan revealed compression fractures I realised that the digging in the garden in July resulting in back pain which I thought was an old war wound slipped disc, was probably the compression fractures. Moving on. I should have had alendronic acid ( offered by GP) months ago but I had stomach issues and refused it.
Thanks to PMR pro and this forum I was educated about alternatives in an infusion form. I also talked to the ROS, Royal osteoporosis Society, recomended by her. They were so helpful and gave me lots of information. Highly recommend a chat with them if you have worsening osteoporosis.
I did not want to wait for NHS tel appt knowing the pred was worsening my bone density but I was able to afford the infusion privately.
Regular exercises monitored by physio have dealt with the pain but I still have aching in lower lumbar. Hopefully that will lessen.
Many thanks all and particularly PMR Pro.
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I’m having my second infusion next week. I was shivery, shaky and generally unwell about twelve hours after the first one. This was pre GCA. Recovered in a couple of days so fingers well crossed this time, will take paracetamol as recommended and build in rest days afterwards. I was told it might be better second time round and I know of people who have had no reactions. Still pleased I took up the option with the subsequent high pred doses I’ve been on since my GCA diagnosis.
I too hate pushing meds into my body and so check carefully. The ROS site is excellent if you are in uk. Give them a ring. I had mine a couple of weeks ago. I did not have any side effects mentioned as possibles...no flu like symptoms or chills or shakes. A few niggles of a headache and I was more tired but that could be the dropping the prednisolone. The infusion itself was a 15 minute drip whilst I enjoyed a cup of tea. I was even offered soup and sandwich afterwards for lunch! Mind this was a private hospital.The next one is for me in a year's time. Some are more frequent and injection, rather than infusion.
There are other bone meds as some are for bone building rather than to stop bone deterioration.
I don’t tolerate many prescribed meds and was very worried about having a ZA infusion. I reluctantly did go ahead and the procedure was straight forward. Was told side effects could be 3/4 days of flu symptoms. I got away with flu symptoms the next day only. Was real flu like and needed paracetamol 4 hourly that day then after that no more side effects. I will have the next two annually which will then last for ten years they say.
Oh didnt know about the 10 years. Wonder why my rheumy is pushing Prolia. Great to hear your experience with ZA. Im not rushing into it, i dont like the sound of Prolia at all. Thank you.
Me neither unti I got there. I jested it was good to hear I would live that long! I am so pleased with myself getting through it. Prevention better than cure where able. I don’t know anything about Prolia. I’m the same with my Rheumie and Mtx - no thank you. I’m steadily reducing my pred and getting through the withdrawals even though taking a little longer. For the first time it by 0.25s!
It probably depends on how bad your osteoporosis is - Prolia is very efficient at building bone density while you are using it, After stopping you MUST start a bisphosphonate instead or you risk rebound loss of density and spinal fractures. Bisphosphonates alone are slower but maintain bone density well.
Thats what bothers me, ive only just slipped into osteoporosis markers. Think i was saying before, -2.7 being the worse, lumbar region. Prolia just seems a bit of a jump. Maybe im wrong.
Power walk. Do look at starting one of the meds ASAP. My scores were not too bad in Dec '22 ...L1-L4 was -2.2 and neck femur-2.4 and -2.6, and it was noted that my BMD had dropped significantly since previous scan, 3.5 yrs before. GP offered aldronic acid although I said I could not tolerate it because of digestive issues. Unfortunately, he did not tell me there was an alternative.
Consequently, 8 months on a ct scan revealed 5 vertebral compression fractures. Thus, the infusion.
As I had been seeing a physio I have been doing correct exercise for a while now and thankfully the pain has gone and the ache in back is slowly lessening.
This could have been avoided, perhaps, if I had been offered the infusion in Jan.
Yes, thanks i will, just getting over this 2nd back surgery, dare i say lumbar surgery. I will be sorting it hopefully when i feel a bit human. Thank you.
Terrified of the ZA infusion but with 8 vertebral fractures had little choice. No side effects. Cannot tolerate AA. I'm presuming next one is in a year. Had an excellent nurse who kept me well distracted. 15 mins. Half hour to check vitals and homeward bound.
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