Dexa results, awaiting GP advice, osteoporosis and Alendronate

[Preposterous]

Having been diagnosed with PMR in March this year (currently tapering to 8.5 Pred on DL's 5 week slow taper, all going fine) I requested a Dexa scan before making a decision about Alendronic Acid, which GP had prescribed at same time as prescribing the Pred, Lansoprazole & subsequently Evacal D3. The scan was done in early July and I've not heard anything since then regarding results and have been wondering when I would get them.

But last night I decided to check my NHS app to see if anything had popped in there and was surprised (and shocked) to see Lab result recorded as follows on 23 August: Osteoporosis - L spine T score -4

Underneath was the following note: 'Advice. Oral prednisolone dangerous here, given T score, needs treatment - weekly Alendronate for 5yrs and rpt DEXA on this after 3yrs, lower steroids and aim to stop by any means if poss'

Healthcare professional's comment - telephone advice.

As I'd heard nothing from the GP surgery I then looked to see if there were any messages and found under Upcoming appointments a telephone appointment has been made for me on 2 Sept. I presume this is about the DEXA, or maybe it's about the PMR, or it might be about something else as I recently had blood tests for cholesterol. To be honest I'm a bit surprised not to have heard about this appointment in some other way, luckily I'm at home on Monday afternoon, but maybe it's just left to patients to check the NHS App on their phone.

The reason for this post is to ask guidance for preparing for the call on Monday! I don't know the GP named on the appointment but it sounds like she might want me reduce steroids more dramatically than everything I've learnt on this forum, though I might be wrong. I've found your link to the ROS website and will read up on osteoporosis and treatments before Monday. And also as it looks like Alendronic Acid may be unavoidable I'll read up more on that...

What are the essential questions I should ask of the GP? Presumably I should ask for a copy of the full Bonedensity result?

Thanks

[PMRpro Ambassador]

Although that is just a single result you have quoted - it is well into the osteoporosis range and you really do need some form of bone medication. AA is the go-to as I'm sure you are aware but if your other t-scores are similar, I'm surprised they aren't starting with something more potent since AA tends to maintain bone density where it is rather than improving it. But ROS will talk that all through with you.

Have you any contraindications to AA: reflux, trouble swallowing and so on?

And obviously - stopping pred any time soon ISN'T really an option!!!!

[Preposterous in reply to PMRpro]

Thank you - I definitely need to get the full bonedensity result (& I’m. not sure what ‘L spine’ means). I’ve never taken Alendronic tabs before but haven’t had reflux, or trouble swallowing anything before.

[PMRpro Ambassador in reply to Preposterous]

Lumbar spine - the section of the spine they look at

[Preposterous in reply to PMRpro]

Thank you -I wasn’t sure if L referred to Left..:

[Den73 in reply to Preposterous]

Hi Prepsterous I had a very familiare dilemma was offered Prolia, its a 6 monthly injection, I cannot take AA as it irritated my stomach I suffer gastritis and oesophagus issues, had to stop taking a few months ago.Then about 3 month's ago suffered compression Vertebrae fracture L7 and had DEXA and osteoporosis was confirmed.

I flowed the advice of DL and contacted ROS because I had read somewhere that Pred and Prolia dont go well together,I decided to contact them via their help line [e-mail]

I received the very helpful rey within days, totally putting mind at rest and gave settled for Prolia because it stre hthens amd thickens bones apparently, but Nikki, the lovrly lady thatvreplied to.me explained i her email.

You do however have to have blood tests as if Vit D is low you have to build to their requirements for the injection,my blood results wete low so I aminthe process of having weekly Vit D injections, then another nlood test to approve.

The advice given by not stopping Pred is so valued by myself, I was so proud if myself got right down to 10mg and 🤦🏼🤦🏼🤦🏼had a flare of PMR just yesterday and of course GCAso took the previous advice of rheumatologist to take a higher dose immeduatly so I am on 40mg, feeling like its working...my intention is to stay on 5mg....if I ever get there😢

I strongly advise to contact ROS her concluding comment was please contact me again should you have firther questions.

Thanks DL !!!🤗

Hope all works for both of us. I have afriend who has been o Prolia admittedly she hasnt any autoimmune diseases but she has had no side effects on Prolia x

[DorsetLady PMRGCAuk volunteer in reply to Den73]

Looking back at previous posts of yours, you seem to have flared a few times, so would say maybe you are reducing too quickly. You may be able to do that at higher GCA dose, but once you get down to the teens you really need to slow up especially if you have PMR as well.

With latest flare did you have GCA symptom as well as PMR? Just wondering if it was really necessary to go as high as 40mg - and how long are you are intending to stay there? So long as it’s less than 14 days you can drop down to just above previously dose - not that dose as it obviously wasn’t quite enough.

Then implement a much lower taper -certainly once you get below 10mg - 1mg every 4-8 weeks is in guidelines.

[Den73 in reply to DorsetLady]

How weird😀 I am literally lying on my bed thinking I must contact you as I think I am still being too eagre with the decreasing and was going to ask the question about the 14 days....because I really dont want to stay on 40mg! The previous dose was 12.5 and before that 15mg? Could I go back to 15mg before the 14 days for 4 weeks then drop, I will look at the guidlines again.

A few days ago sort of midweek I could feel PMR flare coming to a head but by yesterdsy knew GCA was very present, I was quite worried last night and not quite sure what to do, so decided on the 40mg seeing as they were both presenting a flare, this morning still not anywhere near myself but definitely not worse.

I have been decreasing by 2.5mg for 4 weeks, thats obviously too quick. 1mg as I get lowersounds more reasonable, felt so well so became eagre beaver I think🤔

Thank you I so appreciate your valuable advice, all just gets a but much, think the flares have been due to emotional upsets, dont do anxiety very well these days.

Was encouraged though as I felt so much better last week, first time since my journey started! So think eagerness overtook me!! Xxxxx

[DorsetLady PMRGCAuk volunteer in reply to Den73]

Very sensible to go back to 15mg for a month - and only reduce by 1mg from there. We usually say 7-10 days on increased dose for a flare (but that’s usually only an extra 5mg)-but you can stay up to 14 if needed. Maybe take 40mg mg for 2-3days -then 20mg for another week. Provided you feel okay then down to 15mg as discussed above.

Surprising what powers we Viking Goddesses have🤣😂

[Den73 in reply to DorsetLady]

Great powers indeed! Think you should should start a training course for the docs that think they know🤫😂This is definitely where I come for advice, as the saying goes the proof is in the pudding...experience far more trustworthy than theory!!!

Great thank you again, thats good news will follow your advice.

Have a great weekend xxx

[DorsetLady PMRGCAuk volunteer in reply to Den73]

The wise ones [doctors that is, not us 🙂] listen to their patients and learn - others just read the book [or not] and think they know...

Big difference between living it and reading about it...

[Den73 in reply to DorsetLady]

So true, my GP makes up for the rheumy.GP so lovely admitted he knew nothing about Sjorgens disease when I first saw him, next time I visited came out with so mych knowledge he looked it up on the Sjorgens societys page...now that I admire and even then he admitted that he can never know what its truly like...humble too so I have made a friend.👍 xx

[arvine in reply to Den73]

My dr GP was mmemtioning sjorgens disease , I have so many issues going on, what symptons are you having and what did your dr have to say to you about it, oh and how did he test for it?

[Den73 in reply to arvine]

Hi arvine, its a very difficult disease to identify accurately because with all these syndrome we seem to react differently. The most common symptom is very dry eyes and dry mouth because it affects the moisture glands but also a lot of other things, that we may never suffer but some do.

Mine was diagnosed through blood tests and sometimes thry do a lip biopsy to determine the saliva activity.

Usually if the GP suspects it they refer you to the rheumatologist.

I unfortunately am exhibiting some of the more unusual symptoms like neuropathy headaches also terrible fatigue very sore eyes not so bad dry mouth.

I did a lot of research on the internrt, there is a Sjorgens disease society which is accurate with symptoms and what questions to ask.

One site will take you to another site....the NHS site was also quite helpful, just search google with a question you are keen to know.

But keep in mind that there are symptoms nentioned thst not everyone is going to experience, so e have no more than dry eyes and dry mouth.

Search o here too there is a Sjorgens group they too were very helpful.

Hope you find the answers you are looking for.

Rheumatologist rooms also have a booklet on Sjorgens disease explaining a lot. X

[arvine in reply to Den73]

Oh thank you, well I have had those symptons among a lot of other issues for while now, had blood test done monday past, usually can get on my picket health site in next day or two, so far not available, and not sure if this test was for sjorgens or not, fe was rather evasive last appt,

[Den73 in reply to arvine]

My previous GP because I had so many differents things going wrong, she decided to do a whole lot of autoimmune diseases and Sjorgens was one if them, if he hasnt done a blood test on it then ask him if he would do one.I too for a good few years displayed symptoms which I now know is Sjorgens for a good for years and no one ever suggested a blood test, until the recent GP basically said we need to get to the bottom of it all.

Bit of trial and error I believe. Xx

[arvine in reply to Den73]

Ok well how does dr treat sjorgens disease then?

[Den73 in reply to arvine]

Oh eell that too was debatable, my rheumatologist insusted on Methatrexate but it was not good for me, I had toxicity to it was not well, although others can take it not necessarily for Sjorgens and no sude effects, so again everyone so different.The Sjorgens society suggest hydroxychloroquine which seems to be more effective and work well, so I am in the process of acquiring anothe rheumatologist who is prepared to work with my needs.

I have always suffered IBS and lots of other digestive irders, which again is something akin to Sjorgens, it can take a while to hit what is going to work for you.

So its going to depend on the support you going to get I think. X

[arvine in reply to Den73]

Well thank you , i too have IbS for many years , so I ll read up a bit to educate myself more

[Den73 in reply to arvine]

Then really a good idea is to have that blood test and head for treatment.Now that I am experiencing the symptoms more than the past few years, I realise I have had it for at least 5 years.

Yes go on the internet and educate uputself brcause most of the doctors dont seem to know too much about I certainly have never heard of it as has most people.

Wish you well because as soon as you revrive treatment, I am just on prednesolone but hopefully that will change 🙂 xx

[arvine in reply to Den73]

Thanks again Den, I have been in prednisone for 8 yrs as of this Oct, and I think, and my GP thinks , many issues Ive haf in last couole of years could very well be from long term pred, I ve had 2 starting rounds began with 40 mgs each time, Im at 4 mgs now, for las 4 mos, and just started a taper last week dead slow method to get to 3 mgs, Ive had lanral tears in hips, tendon tears, nerve entrapment, high risk if fracture from dexasscan mow, and list goes on, now thru MRI s finally seeing ortho surgeon sept 11th, groin hip and thigh pain over 2 mos now, at my wits end, sorry for long vent, just dont need anything else going on, or more meds, but see what his opinion is, phew!

[Den73 in reply to arvine]

Oh Arvine so sorry to hear all this, I have had much similar, but for a much shorter period, it is really discouraging as it seems it goes ok for a while and then everything goes wrong, I have had a hip replacement 2 years ago, had so much pain but had to wait 18 months for the operation due to covid, great muscle pain in my upper thighs since realised thats Sjorgens too, and so much more, I dont want to go down any lower than 5mg of pred because I dont want flare ups.I have that GCA which is quite a serious side effects like blindness ,stroke or aneurysm, i have been on 60mg for a year because of that, and yes I do agree those higher doses make us feel awful

Eventually after a good year or 2 , I will taper, as now I have osteoporosis thanks to pred and Lanzoplazole for indigestion been on them for 2 years🤦🏼 but we just got to work with it....no dont apologise for as you say venting, I know how comforted I felt when I could just talk to someone who understood that I wasn't just making up all the challenging situations, even just the fatigue is very difficult to work through.

Hope you manage to get the results you sre looking for. Xx

[arvine in reply to Den73]

Thank you Den,

[PMRpro Ambassador in reply to Den73]

Like DL, I think returning to 15mg would be sensible since it really is unlikely that you need as much as 40mg for long. As you approach doses where you have flared before it really pays to slow right down and inch your way to and past them. You will get lower - just not yet!

[Den73 in reply to PMRpro]

Thank you so much PMPro, we fledglings are learning so much, in particular the slowing down bit of Pred.I need patience🤣🤣 just get so excited that the dose is so much more manageable, doesnt help either when I see the rheumy and he says you should be lower than this🫣

Thanks for sharing invaluable knowledge!!

Have a great weekend xxx

[Preposterous in reply to Den73]

This is all so helpful, I’ll do some reading and get in touch with the ROS helpline, and find out about Prolia.

I hope your flare is swiftly suppressed by your upped prednisolone dose and that things get better for you - well, for us all! I’d felt blessed with good health for a long time but things do seem to be unravelling recently - although I know I’m still blessed compared to so many people all over the world.

Have a nice weekend!

[Den73 in reply to Preposterous]

I so understand your comments.From the full life I was leading, always on the go to this person that just wants to get under the duvet most days😜 stop myself from doing that and try and do things that divert my thoughts.

Was so encouraged when I felt so well the week before that I thought, the possibiity amongst all the heath issues, we can still feel a little bit normal again when things are going well, even if they are brief moments for niw, its early days for me too just over a year since I contracted PMR and GCA

I really value this site and the advice and encouragement we all offer each other.

Thank you for your encouragement I hope too it comes right for you.

If we can just manage the effects of the syndromes, it just makes it easier on us.

Have a good weekend, take care. X

[waltztherapy in reply to PMRpro]

What is ROS please?

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Royal Osteoporosis Society-

theros.org.uk

[DorsetLady PMRGCAuk volunteer]

There are other options but as PMRpro has said discuss with ROS-they are very helpful.

Surgery should have notified you of appointment if nothing else… mine always text me confirmation of appt. I always check results of tests online anyway.

[Preposterous in reply to DorsetLady]

Thanks ! Do they as a matter of course send you the patient the results? Maybe they’ll come through soon either by post or in my online records (nothing yet)

[DorsetLady PMRGCAuk volunteer in reply to Preposterous]

Our surgery has systmonline - so once GP has reviewed they get input by admin staff and also goes onto NHS app . So I check if I’m expecting them. If your surgery doesn’t have similar then they probably expect you to ring them [not easy these days]

[piglette in reply to DorsetLady]

I have never heard of systemonline. What is it? I looked at my notes recently and discovered two replies after check ups asking me to check with the surgery for an appointment, both were over two years old. A bit late now. Trying to log in the other day they seem to have changed the system so I can’t get in. Perhaps it is now Systemonline. Perhaps the computer has decided that I am dead, as I did not reply to it or it is in a huff!

[Preposterous in reply to piglette]

I’m quite new to the NHS app and how it works, but I’ll now know to check regularly rather than wait for notifications - the messages that do come through as direct texts from the GP practice are the ones asking me to review my last appointment! (I have to say I’m sick & tired of being asked to review everything I order online, be it just a pack of batteries!) I’ll see if I can find out what system online is in case it’s something i should also sign up to.

[piglette in reply to Preposterous]

I am never contacted by the surgery except for Covid vaccinations and I think that actually comes from some central place. My surgery seems to have abandoned on line bookings for appointments. In fact they seem to have abandoned appointments altogether as all the partners are now working privately a lot of the time.

[Preposterous in reply to piglette]

That’s grim isn’t it!

[piglette in reply to Preposterous]

The whole Health System is collapsing. It also seems that GPs are going private so have even less time to support their patients.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

This is site - and photo shows what patient sees when logged out [cannot show when logged in as shows personal details]

tpp-uk.com

Systmonline

[Rugger in reply to piglette]

Systmonline is just one of the software systems that GP surgeries use - another is EMIS. My surgery uses Systmonline (no "e"!) and that's how I can order my meds and see my appointments, results etc - once registered via the Practice.

When I worked in the NHS, visiting GP surgeries, I had to learn how to use them all - nightmare! 😱

I don't have a Smartphone, so no NHS app - thank goodness!

[piglette in reply to Rugger]

Even if you did have a Smartphone, the NHS app would not work properly anyway. On the other hand you do save a lot of your time trying to make the app work!

[Rugger in reply to piglette]

👍 🤣

[AgedCrone]

Before your GP appointment you would be very well advised to call the ROS & speak to one of their specialist OP nurses. They are very welcoming & will explain the choices available to you..& advise questions you should ask your GP re the treatment available . As your Lumbar Spine is affected some sort of treatment will be offered by your GP …..and from personal experience I would definitely take that on board.Before I knew I had OP I had a fall & fractured two vertebrae & was started on a Biophosphonate (AA) immediately. Try not to be influenced by people who say they have not suited the treatment they have been given,,,,we are all different.

[Preposterous in reply to AgedCrone]

Thank you very much for your advice.