Long term low dose Pred if you have Osteoporosis

[HappyDiamonds]

I have been reading with interest some other posts where its mentioned that Rheumys become less worried about Pred when you have tapered below 8mg and that some patients stay on lower doses for life. Would this apply to people such as myself who have osteoporosis caused by high dose steroids? I also have osteoarthritis and multiple vertebra fractures. Injectin Acemtra weekly and 10mg Pred daily (never managed to get lower than 10 but fingers crossed the Actemra will enable to do that this time).

[PMRpro Ambassador]

They are probably more concerned about the dose then - BUT there are ways of dealing with low bone density/osteoporosis and they are discussed a lot on here. While bisphosphonates are controversial - they do have their place and anyone with low bone density due to pred is that place.

[HappyDiamonds in reply to PMRpro]

Thanks for you reply. I did have an infusion of Zoledronic at the end of November and a second dexa scan last week to see how thing are now, my first one was 14 months ago. I have also been referred to Osteoporosis Clinic. In case its of interest to anyone else I had always been wary of bisphosphonates due to side effects but all I experienced was a slight temperature the night following the infusion and some acid reflux. Nothing since and it wouldn't put me off having further infusions.

[PMRpro Ambassador in reply to HappyDiamonds]

How bad is your osteoporosis? Was denosumab never mentioned?

[Noosat in reply to PMRpro]

This is timely for me, as my doctor proposed the med you mention. The exam showed an OK spine but deteriorating hips. After reading the pros and cons of biphosophonates, I havr decided to reject medecine. I am 94 as of this month so I have an old body which will probably not last too much longer. Also have a fairly high tolerance for pain and discomfit. I would rather continue my good diet, exercise and walk as much as possible. Comments welcome.

[PMRpro Ambassador in reply to Noosat]

If you want comments - you would be better posting separately as only I am likely to see this comment. I don't know - you could go another 10 years they way you are going on! But what I do know is that a spinal fracture hastened my husband's deterioration a lot.

[Noosat in reply to PMRpro]

Thans for your reply. I have a new GP who has high qualifications but I think he sees that the "shoe fit all." Over time I have found that I need to sometime take my health treatment into my own hands as I do know my body better than anyone else. I do think we all need to be proactive with our health. I used to go to a GP who would discuss with me all medications. I thought him very good. However, the people who worked for him were always terrible and he was seldom accessible when needed.so after years of urging by my children I changed doctors

[HappyDiamonds in reply to Noosat]

It wouldn't feel right to advise you one way or the other but I can tell you that I am 20 years younger than you and considered myself fit. Had a dexa scan with good results so declined bisphosphonates until a second scan promised 1 year later but first spinal fracture occurred only 9 months after the scan and osteoporosis was diagnosed. It was that quick! I wish you all the very best and hope your good diet and exercise serves you well.

[Noosat in reply to HappyDiamonds]

Thanks for your reply. Yes, we all have to be proactive with our health and make our own decisions. I am an ex competitive runner, tennis player etc. At my age my once wonderful strong legs are failing, however I tell myself to look at other persons my age and feel grateful. I live by myself with a dog. Do not need help to dress, bathe or do light housework. I can take Lily,dog, to an undeveloped park by the river where I walk over rough ground, gras and rocks as long as I can then sit on s bench to rest before the next walk. My children have set certain rules such as do not get on eunless someone else here, wear shoes when I go outside on my big dec etc.

[HappyDiamonds in reply to Noosat]

Then we have a lot in common Noosat, I live alone with a black Labrador who I love to walk. Sadly that has been curtailed the last few months which has been the hardest thing for me to come to terms with but I have a couple of lovely dog walkers for him. Luckily he also enjoys a cuddle on the sofa and sometimes even a cup of tea and a biscuit. 😀

[Noosat in reply to HappyDiamonds]

Sound lovely ! Our visits to park have been curtailed because the one i like best, where Lily n run free is a twenty mile round trip and my eyesight is dimming, although I managed to get license renewed this month. I usually like to go in early morning when traffic there is light, however the mornings have been too cold. I live in the hill country of Texas When thr weather warms and nightfall is later my daughter will take us on a Friday evening with her black lab, Noelle. We take a bottle of wine and make a pic-nic of it while the dogs run free and can mingle with other dogs if they choose to. Lily has a special friend who she runs with and hunt squirrels. Lily is a Borodor

[HappyDiamonds]

I honestly don't know but I have a phone appointment week after next so will ask. You may remember I was totally shocked to wake up one morning with a fractured spine. My first dexa scan was good, that was November 2020, diagnosed with Sacral insufficient fractures August 2021 and 2 spine fractures since. Spinal collapse consistent with Osteoporosis. The newest problem was wedge collapse of L1. I have arthritis in spine, hips and pelvis but was never aware of that either until lowering Pred - trust me I know now though! Hospital did say the purpose of the new dexa scan was to decide if I needed further treatment but I don't know whether you can be treated with other meds as well as the infusion. Obviously the infusion is not as much benefit to me as someone with 'just' osteoporosis as I have to continue with Steroids for GCA.

[PMRpro Ambassador in reply to HappyDiamonds]

The bisphosphonates usually are used to maintain the existing bone density, sometimes they do increase bone density but not always. Denosumab, on the other hand, does lead to an increase in bone density. The problem with it is that when it is stopped there is rebound loss of spinal bone density, often leading to spinal fractures. So once it is started, either it must be continued indefinitely or you are switched to a bisphosphonate to prevent this rebound process. It is also thought that giving bisphosphonates first helps but they are relatively slow at building bone density.

There are other options for the fractured vertebrae. Were you not given a dexascan at the diagnosis of GCA to establish a baseline - it all too often detects osteoporosis for the first time.

[HappyDiamonds in reply to PMRpro]

No, they were reluctant to give me a dexa scan when I was diagnosed in May 2020 but I held out and eventually got a scan after 6 month in November 20 and that was good. Thank you for explaining about the difference in meds. I dread another fracture as healing take 12 to 16 weeks and is so debilitating so I would consider anything that increases bone density.

[PMRpro Ambassador in reply to HappyDiamonds]

There are also "cements" that can be put into the damaged vertebrae in various ways

hopkinsmedicine.org/health/....

spine-health.com/video/kyph....

It's all very complicated - have you contact the ROS helpline? They will discuss it all with you

theros.org.uk/

[HappyDiamonds in reply to PMRpro]

I think I will give them another ring, I did contact them initially and joined as a member. The more information I have the better as I like to know as much as I can, never been one to bury my head. Thank you Pro.

[PMRpro Ambassador in reply to HappyDiamonds]

Yes, I NEED to know. Then I can get it into context better - don't care how gruesome, not knowing is far more difficult to deal with,

[Avadip12]

Haven’t got anything to add , other than your problems put my PMR troubles into perspective . I would like like to wish you a pain free weekend , and hoping you get all the support that you need.

[HappyDiamonds in reply to Avadip12]

Thank you that's very kind of you to take the time to reply. I wish you well too.