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.
Hi, tangocharlie. A lot has changed in the last 10 months. I have done an exercise routine religiously once or twice a day with the guidance of my physio and the ROS literature and videos. I did have a lot of back ache after the fractures healed.The aim is to improve posture, stop the stoop and strengthen the muscles to bring my torso back as far as possible to the original centre of gravity position. Does that make sense? It is working amazingly well. My physio is delighted with my improved posture and I am getting a lot less ache.
I can have the next Zolendrate infusion on NHS in Nov. I won't get any bone density scores till next dexascan in December or so.
I have found it quite difficult to reduce the prednisolone, however but I am now in the middle of DL slow drop from 7.5 to 7mg. It is taking 10 to 12 weeks per drop!
As happens with PMR, I have a more limited life than I had previously but I am physically fit and can walk etc easily. I just hope that soon the other symptoms ie lack of energy and drive, low mood and no inclination to go anywhere will go in time as I drop.
How are you doing now? You have had a lot more problems than I have.
Thank you for that. I am working with a physio who is a specialist in spinal fractures, and we are starting with low level exercise and just a few minutes a day and will build up gradually so as not to risk further fractures and give the Romosozumab time to kick in. I'm really glad to hear you are back moving and wlaking etc, it gives me hope that by Easter or so I'll be bouncing round like a spring lamb. Remember with the Pred the idea is not just getting to zero but at all times getting the right dose to manage the inflammation so it's not always a linear path when reducing and tring to find the optimum dose. You might find you need to stick at a dose longer. All the best
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