Rheumy app and Zelondronic Acid!

Bones, joints and muscles
1

Have just been to see Rheumy, who wants me off steroids ASP, (on 10mg) " I have been on them too long, (3 years) and they do lots of damage!!"  She also wants me on A/Acid to potect my bones, but wouldn`t tell me the dexa reading....I am only thinking of you before you get Osteoporosis, she said...

I have hadME/Fibro 20 odd years and react to meds...so loathe to have the injection...she assured me no side affects like tablets.....I would welcome any experience from you all with this drug!....In the meantime will try to get the dexa reading from my doctor....

One thing I did state was, I am reducing the pred as slowly as I want!  she didn`t argue at this point...

Also asked me if I was diabetic, no, her reply, not at the moment but with steroids.........oh dear, .....her final parting shot....lots of PMR symptoms are all in the mind!!........

2

Doctors like these should be struck off!

3

Hi Linda, I refused A.A because I haven't had a dexa scan yet.  Also I have really bad acid reflux long before PMR.  I am outraged at her comment  "lots of PMR symptoms are all in the mind"   

4

Linda, she is an ignoranous! Ha ha, don't we all want to be off steriods ASAP. Why do some dr's actually think we want to be on these drugs!

yes, steriods can do lots of damage but then so can untreated inflamation.

Maybe you do require AA but that decision should be made following the dexa scan reading, which you have a right to the result. So do not make any decision on AA until you get that.

in relation to your reduction, when the time is right try the dead slow and almost stop reduction plan, but only reduce by .5 each time.I use this plan following a flare reducing from 9to 8mgs and now with the plan I have successfully reduced to 7.5.

as for PMR being in the mind. I hadn't been to a Dr for well over 5 years, and even then I can't even remember what that was for so it could have been even longer. Even now I'm one of those stubborn old mares that "hang on in there" before ever visiting a Dr. When I first started developing the PMR symptoms, typical me I day after day believed that the symptoms would go away, in the end after a month of pain and stiffness that just got worse and worse I visited my GP. I had to wait 3.5 months before a rheumatologist appointment, (the GP couldn't for the life of her think what could be wrong with me, even when my blood inflamation levels were high and my husband had to almost carry me in and out of her consulting room). The pain was so excruciating I believed I was dying. Any person whether clinical or not that implied all of my pain, stiffness, fatigue, well need I continue, was in my mind, would have darn near destroyed me. Stay strong. All the best, tina

5

I wish they were - all in the mind I mean.  I could probably cope with that.  I would think "you can control this".  Oh to think "I have no pain" -  "I am not tired"!!!!!!

6

Dump her and get another Consultant and tell you GP exactly why.

All in the mind indeed - wish I could have a few minutes with her.

7

Yes, I thought I would get a reaction like this from you all.....and why not, pain is pain!!......I am feeling strong today, but on another day, I don`t know how I would have reacted....last time I explained (or tried) why I had split my dose (blurred vision) she said be quiet and listen to me!  Now I am thinking I won`t have to see her again anyway, because of slowly tapering with my doctor`s backing....if I have a flare or can`t get pred down, I won`t go back to her, she has threatened me in the past with Methotrexate if I don`t get off the horrible steroids!.... I`m too old to be dictated to!

8

This is a rheumatologist you need to not see again - she is totally out of reality! Tell your GP you would like them to manage you in future or to find you a rheumy who knows what they are talking about - and reads the most recent publications about PMR since she obviously doesn't.

I've been on pred for just 6 years. I am not diabetic, not even pre-diabetic. My cholesterol is normal again. My dexascan was unchanged and still acceptable after nearly 4 years on pred, mostly at above 10mg/day. 

So PMR symptoms are all in the mind are they? So how come any of us went to the doctor in the first place, some after being stuck in a wheelchair or unable to get out of bed, never mind the house? And taking a drug that none of us would choose to take removes most of them? And how does it being "in the mind" raise the ESR and CRP readings? She's wasted - that is a real scientific discovery she could apply elsewhere - in lowering them.

I think she should think herself lucky that lodger and I are nowhere near to bend her ear. 

9

And I knew I'd forget one rant - so giving drugs as injections means they don't have side-effects does it? That's another amazing piece of medical science and one that could prove very useful! They may have DIFFERENT side effects - that isn't the same...

10

Entirely agree with all the above!  and did challenge her on side affects with injections, she said you got side affects with tablets because they went through the gullet, and injections do not!  Give me strength!....now you can see why I call her the smiling assasin...she`s lovely when she says hello and shakes your hand, and then.........

I said to her before I left, you really don`t like steroids do you, she replied, they save lives but do untold damage while you`re on them....especially a s long as me!  (3 years)

Ps she said my CRP was 1  that is all I heard her read out....

11

She obviously doesn't appreciate the difference between the gastric/oesophageal side effects of bisphosphonates and the basic problem for patients with fibro/ME who often don't tolerate medication. Who were you under for the fibro/ME? Don't rheumies do that too? If so - god love her fibro patients...

12

Was never sent to her for ME/fibro, but told her this morning (and have previously) that I have these also, and that I do not tolerate meds at all, she said this is an injection so wouldn`t affect me.(end of!0...she has left it to me to tell her within a week as to wheather I want it or not...she said I`m protecting your bones, and it`s no good coming to me when you have Osteoporosis...fat chance of that! 

i only want to make that decision when I know what my dexa scan readings are....What is "within normal range" Eileen can you tell me that please...Thank You.....

13

What about me too!! I have a pretty mean mouth on me, and as for my right hook, well we won't go there!! Tina

14

Google it - this is the link to the professional page on this site

https://patient.info/doctor/osteoporosis-pro

but it is pretty complex for a lay person to read. The patient page here is useless, doesn't tell you anything you don't already know. 

On the NHS page it says:

"The difference between your measurement and that of a young healthy adult is known as a T score, and the difference between your measurement and that of someone of the same age is known as a Z score.

The World Health Organization (WHO) classifies T scores as follows:

above -1 SD is normal

between -1 and -2.5 SD is defined as decreased bone mineral density (BMD) compared to peak bone mass (PBM)

below -2.5 SD is defined as osteoporosis

If your Z score is below -2, your bone density is lower than it should be for someone of your age.

Although BMD results provide a good indication of bone strength, the results of a DEXA scan won't necessarily predict whether you will get a fracture. 

For example, someone with low bone density may never break a bone, whereas someone with average bone density may have several fractures. This is because other factors – such as age, sex or whether you have previously had a fall – will also determine if you are likely to sustain a fracture.

Your doctor will consider all of your individual risk factors before deciding if treatment is necessary."

It's the T-score that is important, the Z score is pretty meaningless.

If you had your readings I could tell you what they're like - demand them from your GP, they should be able to get them.

And call the National Osteoporosis Society - their helpline is said to be superb.

15

Agree!!

16

I stopped AA after a month because of the horrid side effects.  Went to see my GP and asked for a dexa scan as a baseline but he said OK to stop and see how you get on!

17

All welcome...

18

Classic case of poor bedside manners!!  Also 'tin god' comes to mind!

19

Wonderful thank you.......

why is life such a battle with the NHS...I have rung doctor`s for dexa scan results, they were never sent through to them!  now had to ring the dexa scan people, they are going to fax them through  to  my doctor......and I ring again later....now I need a lie down, but of course it`s all in my head!!  How do those poor people cope who don`t have our lovely friend google to find us this info....god help us if he gets PMR!!  Thanks again!

20

Absolutely!