Tapering steroids: Hi I had a dexa scan a couple of... - PMRGCAuk

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Tapering steroids

Flrchrs
Flrchrs

Hi

I had a dexa scan a couple of weeks ago. The doctor call this morning saying I'm osteoporosis of the spine, -3 on the T score. The doctor said I need to taper the steroids to get off them .don't they think I'm trying .On 4 mg will try 3.5 next week but pain in upper thighs and shoulders . A couple of weeks ago I was having an operation the anesthetist said I should stop taking steroid as they cause bone loss and blood pressure.

Don't think these people know how disabilitating PMR is . Been told to take extra calcium and back on AA .

Been told to jog !always did lots of exercise before prom got me. Climbing and backpacking,cycling touring and racing those were the days😢

23 Replies
oldestnewest

Mmmm, I’m sorry you’ve had to listen to such twaddle! You have 2 (3?) problems. Each needs managing, in combination.

Reducing your preds quickly won’t make the PMR go away. You have that for as long as you have it, simple! Reducing too quickly will cause a flare, then you’ll be on higher doses again. You and I know this. Why don’t doctors?

How long have you been on steroids? Is this the first dexa? Do they KNOW it was caused by the pred? Probably not. So you have osteoporosis, that needs managing as well as the PMR. Are you on VitD as well? Also check out VitK2 and prunes. Getting sufficient magnesium & phosphorous in your diet?

And do you actually have high BP? If you haven’t got it already, you’re not likely to now that you’ve got this low on pred.

Don’t try 3.5 next week if you already have PMR symptoms. 0.5 isn’t going to affect your OP but a flare will!

Jogging? Really? Walk walk walk, but jogging??????

How depressing Flrchrs!

I would carry on as I am, reducing from 4 mgs at a pace that suits my body. The effect on my bones from such a low dose would be negligible. The effect of rushing off this dose would be detrimental to my well being. I understood that you do not take Calcium supplements with Alendronic Acid. Please check!!,At this stage I would want to investigate whether AA can do any good. Many factors contribute to Osteoporosis, nobody can be sure that it was the relatively modest PMR doses of Pred. Recent studies suggest that Pred in modest doses is not as harmful as was once supposed.

You are clearly a person who has taken care of themselves. I am sorry that so many people pile on the pressure. You are doing well with your taper. I would keep calm and carry on without feeling the dogs nipping at your heels. Wishing you all the best. Keep in touch. Jogging is bonkers for the knees. Get a Fitbit or similar and start walking counting your steps. Courage!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Hi Jane,

I took Adcal and AA through my journey... you just don't take them at same time. Like you don't take Pred and Adcal at same time.

Thanks for the clarification DL. I bet it’s pretty in your neck of the woods.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

It was glorious this morning - sunshine brought locals and holiday makers out for a cuppa by the seaside!

I am in a similar predicament. My hip replacement was more complicated due to Osteoporosis caused by Pred. Took me twice as long to walk again. Still not properly though. I waddle. Now on 7mg I have shoulder pain and my lower back upper/thighs but are painfully annoying. So is OP causing deterioration in my spine? Is it skeletal or muscular? Is it because I can move more now and the atrophied muscles are rebelling. Should I up the Pred? The doctors advice is reduce the Pred soon as possible, loose weight and exercise more. Dead easy I said no problem always been active till the bottom fell out of life as I knew it. Always worked a busy active job. Can’t see why I didn’t think if that at 63 years old.

Well I have decided to torment the doctor weekly along with a Physiotherapist. Planned weeks in advance of course due to availability of medics. I can’t manage on my own or without the support of this group keeping me alternatively sane.

Good luck with what you choose is the best thing for you.

Mike1964
Mike1964 in reply to Estellemac

Dear Estelle, your post has quite made my day, thank you :-) Oh the joys of sarcasm, it may well be the lowest form of wit but when done well (And you have) it's very funny. Keep giving them hell my dear.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Your doctor doesn't understand Pred then...quelle surprise!

At the levels you're on its not doing any harm, see attached post from PMRpro on subject -

healthunlocked.com/pmrgcauk....

PMRpro
PMRproAmbassador

"The doctor said I need to taper the steroids to get off them"

Well he's wrong - because you have 2 limitations at present. the PMR returning if it is still active and adrenal function returning as well. If you still have PMR then reducing the pred dose too far will just make you immobile and immobility is a major risk factor for osteoporosis. If you reduce the pred too quickly and adrenal function hasn't returned you could become very ill.

What annoys me more than anything is that they automatically blame pred - when it COULD have already been present pre-pred, it is in lots of people.

However - the idea of AA is to allow continuation of pred at the same time. I trust before ordering you to take EXTRA calcium they have checked your calcium and vit D levels? Because unless they are both the right level, all the AA in the world won't do anything.

Out of interest - what is your hip t-score? Spine is often lower than hip.

Flrchrs
Flrchrs in reply to PMRpro

Hi

Thank you for all the advice .wish I'd have found this site long ago.

I take a calcium tablet once a day ,only just started since my dexa scan.I've been taking vit D for a while now and eat prunes.no tests for either.

They didn't say what my hip T score was but know it's the stage before osteoporosis.but as it's my first scan who knows if it's the steroids.

I've had PMR for just over 2 years.I'm now 56 male.

Jogging is out the question love walking and tend to use a step counter .

PMRpro
PMRproAmbassador in reply to Flrchrs

Osteopenia is the stage before osteoporosis. It ranges from normal, a reading of -1.0 to -2.5. A reading below -2.5 is osteoporosis. My t-score for hip is about -1.3 I think, classed as osteopenia but a long long way from osteoporosis. If your reading were -1.1 it would be reported as oseopenia, the stage before osteoporosis. So would a reading of -2.4. There is a big difference.

Bisphosphonates are not recommended for normal readings (which at our age -1.5 and better are). It is possible to improve your readings just by supplements and exercise (and no, not jogging). HeronNS has written an excellent post on her version:

healthunlocked.com/pmrgcauk...

Pongo13
Pongo13 in reply to Flrchrs

I love walking too and picked up that purchasing a weighted body jacket helps the bone health. (My next purchase therefore as it was not considered sexy enough for my sis to buy for my approaching 60th. Hilarious. Who the hell feels sexy with PMR? Not me folks.

Soraya_PMR
Soraya_PMR in reply to Pongo13

Not sexy enough! Haha!

For me my pred came with a weighted body jacket! Having gained a stone-ish, I’m quite happy that my bones are getting an extra little bit of physical stress, just what they need to stay strong.

What is he suggesting as an alternative to pred? Thin air!! I just despair.

Flrchrs
Flrchrs in reply to piglette

There was no suggestion of alternatives,all done with a phone consultation. Blood tests are every 6 months.

Even my employer are no better been telling them I find it hard to do my physical job .there reply is to give me more work .The Cannons some may ask "How's that frozen shoulder".Always replying I wish it was ,as they walk on by.

Would have expected more sympathy working for the C of E. They just don't get the pain we go through. Expect other people have had the same experience.

piglette
piglette in reply to Flrchrs

I think anyone with any illness does not get the sympathy from people who have never had it. I recently had a hip replacement and started using a stick and people are really helpful, even though the PMR is the real problem. I think I might carry on with the stick as people I have never met keep offering to do all sorts of things for me!!

DavidMF
DavidMF in reply to piglette

Very true experience. I spent 46 days travelling around the world, having fractured three ribs in a fall on a glacier in New Zealand half way round, our plan had us staying for a week on a private island off Fiji. On arrival my wife explained my predicament to the owner so that they and the 26 staff were aware. (There were only 4 guests) A few days later after trying to swim & snorkel I returned in great pain. My wife suggested a sling, so as to stop me doing things I shouldn't. The moment I started wearing it, was a transformation, I had staff at my sun lounger offering me drinks all day long. The attention was overwhelming, but very caring. It seems people need to see you're in pain, to be able to respond. I reflect on some friends who had cancer and during treatment were, feeling awful, but they looked so fit and well. People around them couldn't believe them and dismissed the issue. "You would look ill, wouldn't you" We need a badge or something. "Watch out it not me"

HeronNS
HeronNS in reply to DavidMF

Exactly! I often say to people who are beating themselves up because they can't do everything they used to, would they expect so much of themselves if they'd broken a limb, or if they had a bad case of the flu? No they wouldn't. But unfortunately PMR is one of those invisible diseases. so other people have no idea. Sometimes we even look healthier than we have for ages because finally we are getting treatment. Maybe we should all be issued with something like a cane or a sling when we are ill with PMR, just to let the wide world know we aren't healthy bunnies right now.

I literally feel your pain. My dexa in November showed a t-score of -4 and I’ve only been on pred since June, for PMR/GCA. Started on 50mg, have up to know successful tapered to 8 mg. HOWEVER, after having my first Prolia injection early Feb am now struggling with either Prolia side effects, pred withdrawals, or a flare of PMR/ GCA and it has only been with the help from this forum and another one I post on that we have worked out it’s most likely Prolia side effects. My osteoporosis was not caused by pred, I have not been on it long enough to result in a t score this severe and I had for years lived a wonderfully calcium enriched healthy exercised enriched and all the right supplement -added diet. And like you my rheumatologist is desperate to get me off pred because of it...but it isn’t happening at the moment and until I get things sorted I will stay at 8 a little while longer. My best advice would be to use the DSNS taper method. Don’t even consider anything else.

Flrchrs
Flrchrs in reply to Reeceregan

Hi

I can't say whether my osteoporosis was caused by steroids as it's the first scan I've had .Have been on them for two years though.

I've always done lots of exercise .Some days hiking 20 miles .cycling most days too 25in the evenings and 100 on Saturday. Although cycling isn't good for bones.

There was an. Interesting article in the Telegraph couple of Sunday's ago about bone health.mentioned using a rowing machine.

Any I've done 10000 steps today time for a rest

Hi Flrchrs. Feeling your pain, Just wanted to say hang on in there.

Kind regards

Mike

Hi Mike

Thanks Mike .Having an easy day today .

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