Having read so many comments during my brief period as a fellow sufferer I seem to recall numerous statements regarding how much we should reduce and how quickly/slow.
My rheumy wants me off Pred' completely on the basis that the initial high dose of 60mg caused a lot of damage, I have Osteoporosis, compression fractures of T4/L4 and other issues but I cannot figure out why the above should be attributed to the use of pred'
However my question is this,should I comply with or question the instruction that I received yesterday ? Reduce from 15mg to 10mg ? I thought 10% had been mentioned somewhere.
Any and all advice will help thanks.
Written by
yorkieme
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You are correct - not more than 10% reduction of current dose is the mantra - certainly at doses below 20mg.
The risk of osteoporosis is a well known side effect of Pred which is why bone protection supplements should be added - preferably in the form of VitD/Calcium - but sometimes a bisphosphonate such as Alendronic Acid is prescribed.
"My rheumy wants me off Pred' completely on the basis that the initial high dose of 60mg caused a lot of damage"
Well that is fine - however, you will only get off pred if and when you no longer need it - I assume he is working on the assumption this is not GCA/PMR? And however much he likes it, below 7.5mg you will have to go slowly. You haven't
Unless he did a dexascan before or within a few weeks of starting pred (which should be done) he cannot be sure that it is pred that led to the osteoporosis and compression fractures. You may have already had low bone density. My husband has osteoporosis and fractured a vertebra in January - never been on pred in his life except 5 days for gout after he had the fall and fracture. But some doctors are convinced pred is always the big bad wolf! The osteoporosis specialist here was taken aback at my dexascan results - she had never seen such good results from anyone on longterm pred!
DL explains the pred connection - have you been given "bone medication?? OH should have started aledronic acid but since he has problems with swallowing he will be on denosumab, aan infusion every 6 months. It would make more sense to go that route than force you to reduce pred at breakneck speed.
If you don't have PMR/GCA then the reduction speed is more a case of what is comfortable for you rather than identifying the correct minimum dose to manage the inflammation. However - if you do 15 to 10mg in one step, at least do it using one of the slowed tapers so you spread the reduction over a bit longer.
Big thank you for such a fast response and what a help it will be.
I didn't have a dexascan until a couple of weeks ago,the result in brief was a -2.5 reading with a recommendation that I should stay on Alendronic acid and VitD. My rheumy is spitting feathers with the G.P. for sticking me on 60mg pred' right at the start, however his defence is that he believed it was GCA.but she now believes that the late Dexascan could well be hiding some info' that would have helped her.She just uses the term systemic inflammation with no know cause as yet.
The G.P. thinks GCA while my rheumy doesn't believe that it is either so I'm in a right quandary while they play Mr and Mrs ego.
The major problem for me is getting them both to provide me with more definitive information, especially reference T4 one says clean break the other compression,and L4 one says clean break the other long term wear and tear with compression fracture.
Meanwhile I am stuck on Zomorph 100mg/day backed up with Oramorph as and when needed. The list of side effects with further medication for each leaves me raging at my G.P. who seems to want to throw a tablet at everything.I need an all round holistic approach to a discussion but he refuses to see me face to face because it is too risky for me.??? utter bollocks.
I have had terrible nausea and unable to eat with Mexthotrexate/folic acid.I agreed to stick with the tablets for the six week settling in period but my what an effort,Odema,insomnia,weight gain and heavy sweating and now this on top with MXT. Anyway I collect the kit tomorrow for injecting having been told by my G.P. it may be better for me.Fingers crossed. Thanks for your patience once again.Kind regards to him indoors and your good self.
I utterly concur with your diagnosis of bollox ...
Darned if I can see what evidence the dexascan would give re inflammation - they aren't THAT clever! You are taking calcium supplements as well as vit D? Calcium is as essential for bisphosphonates to work as vit D.
Have they done blood calcium, vit D and parathyroid hormone levels? Just wondered.
Hmmm - since neither your average rheumy nor your average GP is a specialist in reading x-rays, I think I'd like to hear what the radiologist or an orthopod says. And OH was sent for a CT because the x-ray was a bit equivocal. The osteoporosis specialist didn't think his fracture was due to osteoporosis - think she was surprised at the dexa result.
But wouldn't it be nice if doctors would speak to each other and agree on something before sticking the patient in the middle...
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