Dexa Scan Results/Quandry

[Gc2596]

Recap of Bio, if needed. 67 year old female. Diagnosed PMR and started on 15mg Prednisolone July '24. Until then healthy and active, apart from OA for 30 years in some fingers/1 toe. Currently on 10mg and midway between being on for 2 months before GP review on 25th. Yo-yoing before, some of which down to me with the attitude of getting off within 2 years, not! Take Vit D3, 1000 and recently, reading on forum, Vit K2-MK7 200. Other basic supplements too. Never been advised to take Calcium but although think have good diet I've increased natural intake. I don't need persuading to eat cheese/Greek yoghurt! Walking a big part of my life and back to that whilst being mindful of doing too much.I brought up subject of Alendronic Acid with GP, as friend on it. He thanked for reminding him (wishing I'd kept quiet now). He prescribed and arranged Dexa scan. I haven't taken it as wanted results firstly and after reading pros/cons very much leaning towards not wanting it at all. The results are in and as follows:-

AP-Lumbar spine(L1-L4) T -2.1 (not good?)

Left total hip T -1.3

Left femoral neck T -1.5

Corresponding Z scores:- -0.3, -0.3, and -0.2

WHO classification-Osteopenia

10 year Fracture risk (forearm, hip, shoulder of spine)-11.97%

Hip-1.95%

I've looked in FAQ and so many other posts but hard to take in and feeling quite overwhelmed, not least because don't fully understand. I'm still thinking I'd rather not take AA but worried either way. Recently got over a nasty cough, diagnosed couple of weeks ago with a prolapse, my decision making a see-saw and brain like mush😢.

I realise bone density isn't the full story, as excellently outlined by PMRpro and DL.

Would really appreciate members thoughts and perhaps those with similar results what affect it had on their decision to take, or not, AA. Not entirely sure how bad it is for my age?

Thank you for listening and being there. I've learnt so much from this site and although no qualms really about care from GP I would be in the dark about GCA, adrenals etc. without this Forum.

[DorsetLady PMRGCAuk volunteer]

As commented your results do show osteopenia [not unusual at our age], but that doesn’t necessarily mean it will turn into full blown osteoporosis…

You say you have plenty of calcium in diet. , but Pred does leach the calcium from bones which is why a calcium/vitamin D3 supplement should be have prescribed initially - GP obviously didn’t read that either…

Perhaps go down that route initially - and have a think about the AA.

For the record I took it for 4 years with no problem whatsoever, thought it best due to personal circumstances but it doesn’t suit all…and it’s a bit of a marmite scenario!

Don’t want to overloadbrain even more but maybe call the ROS helpline to discuss -theros.org.uk

But at the end if the day, it’s your decision.

[Gc2596 in reply to DorsetLady]

Thank you DL. I had seen another post where ROS had been contacted and found helpful. As I mentioned, GP appointment later this month so will have to explain why I've not already started AA and assuming don't my reasoning. Calcium supplement of 1000mg mentioned along with Vitamin D3 (800-I take 1000) and AA on Dexa report. Is the calcium supplement something the GP can write a prescription for or just obtain over the counter myself?

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

They should prescribe it as it’s in the guidelines - many on AdcalD3 or equivalent- and 2 tablets per day

Adcal

[Gc2596 in reply to DorsetLady]

Thank you for that. As it's 2 tablets daily does that equate to 3000/800? My current D3 as I said is 1000. I'll certainly bring this up at my appointment and to be honest this is more what I was thinking about when I queried about needing something additional originally.

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

Yes -it is Calcium3000mg/VitD3 800iu. So at the moment you are taking more VitD, but probably not enough calcium…and that’s what the Pred leaches from your bones …

[PMRpro Ambassador]

They are much the same as mine were at the start of pred, over 16 years ago, though I think my lumbar score was a bit better. I discussed it with a different GP and we agreed, AA didn't seem essential, we would monitor it. Some years later the local osteoporosis guru was determined I should take a bisphosphonate - I said no! The next time I saw her she looked at my latest dexascan result, said she'd never see such results in a patient on pred - keep on doing what I was doing.

Fast forward a year or two and I developed very bad back muscle spasms - the most common cause is spinal fracture but nothing was to be seen on an x-ray. A year ago another x-ray showed one spinal compression fracture in the lumbar region that was painless, though I still had soft-tissue problems. We agreed on a course of 3 bisphosphonate infusions at annual intervals. After the first, the back pain slowly but steadily improved, I had the second a few weeks ago - further improvement. I will have one more and then get a 3 year holiday - studies have shown 3 consecutive infusions are as good as 6. The first didn't cause the common flu feeling - it did wake up my atrial fibrillation a bit but it went away and this year, nothing.

On balance - I had 13 years without a bisphosphonate. In her talk to the Yorkshire group, the Leeds expert inferred that our baseline dexascans are borderline for no bisphosphonate. My dexascan after the fracture was only just into the "you definitely need a bisphosphonate" range. What you don't know is how the pred will affect the density and the trabecular structure. I can have a dexascan on demand if I pay the princely sum of under 40 euros! In the UK it is a different matter and while I would say, check in 2 years - maybe you won't get a scan when you want/need it. I'm glad I did it the way I did - I have Long PMR so have slugged a LOT of pred over the years and it wasn't a dramatic fall in bone density. I escaped many years of AA. But it might have been very different.

[Gc2596 in reply to PMRpro]

I've read your 'journey' in several posts from yourself, very informative useful and enlightening. When I think how well informed I'd be without this Forum it amounts to very little. Dexa report advises another scan in 5 years. I'm very much in the mind I will delay taking AA for now and concentrate on alternatives. I will also look into whether it's possible to have a private Dexa scan in a couple of years if not possible via the NHS. Also, will have to see how my tritation progresses going forward. Once again thank you for your input.

[Smithie49 in reply to Gc2596]

Hi Gc2596. I've a poor diagnosis from a DEXA scan 2 years ago but refuse to take bisphonates. I have, like you, taken Vit D3, K2, also Mg and lots of Ca from fat free natural yoghurt. I am waiting the results of a recent second Dexa. Have you tried the FRAX test ? It adds in all sorts of criteria that affect bones like family history and so on.

[Gc2596 in reply to Smithie49]

Thank you for your response. Sounds like my train of thought at the moment. On the Dexa scan report 10yr FRAX, as per initial post, was (forearm, hip shoulder of spine)-11.97% Hip-1.95%. I filled in a questionnaire at the time. A very fruitful conversation with a nurse at Royal Osteoporosis Society today. Said scan (Osteopenia range) results quite good/low risk and if not on Prednisolone wouldn't warrant taking any additional measures. However, of course I am. It's what risk I decide to take but at the same time may not develop into osteoporosis or have a fracture. A comment was if I didn't take it but then suffered a fracture I'd have to deal with it, obviously, and then possibly take AA. Oh for a crystal ball! Have to say she gave plenty of advice on how to look after my bones and pleased I made the call.

[PMRpro Ambassador in reply to Gc2596]

In case you haven't seen the discussions there have been - it isn't JUST developing osteoporosis that increases the risk of fractures. Pred affects the trabecular structure of bone so it becomes less stable and that particularly affects the vertebrae and compression fractures become more likely. Two of us at least on the forum have consistently had good dexascan results - better than yours - and we had elected not to take bisphosphonates. Both of us have subsequently developed spinal fractures - I'm lucky, I have only had one that we know of but tangocharlie has had several with a great deal of pain and disability as a result. I have had 2 of a 3 infusion course of zolendronic acid done at yearly intervals. She is having a new biologic because her situation is so severe. The dexascan does NOT tell the whole story.

[Gc2596 in reply to PMRpro]

Yes, I was aware having read many of your posts and information on the site. Perhaps hoping to 'get away with it' as you did for a few years and although a scan not the full story see what outcome is in a couple of years and also what level of Prednisolone I'm on. I know of someone who had necrosis of her jaw due to AA, ending up tube fed and whilst realise extremely rare it obviously didn't help my thought process. Rightly or wrongly not everyone seems to go down the AA route and I suppose I'm latching on to those who decide not to. As I said previously, had I not brought up myself (aware due to friend taking it) with my GP I'd have come out of the surgery without being given a prescription/scan arranged. It would be interesting to know what level of members are are taking/ have taken AA and their thought process but would possibly open 'another can of worms'! Please don't think I don't appreciate your wealth of experience as I've learnt so much from here that I'd be clueless about. Perhaps choosing what not to see on this occasion 🤔

[PMRpro Ambassador in reply to Gc2596]

It is usually the other way round, doctors forcing it on patients!!

[Gc2596 in reply to PMRpro]

You use the word "forcing" but believe AA should always come into play? The nurse at ROS said get numerous daily calls with concerns so I'm not alone but understand being on Pred a big influencing factor.

[PMRpro Ambassador in reply to Gc2596]

Not necessarily AA, there are alternatives, A primary complaint from patients is that they are handed a suitcase of medications without any explanation of why, Past guidance for PMR management was that a dexascan should be done - it rarely is - and the medication depended on that, ranging from calcium and vit D supplementation for a good bone density result to a bisphosphonate and now the newer monoclonal antibody biologics like denosumab for more severe density loss. But most doctors tended to just hand out a prescription for AA. It is a pain to take, even if it is only one day a week - that makes compliance more difficult in itself, a lot of patients can't see how it matters if you miss it when it is just once a week, Many got gastric problems. We have had quite a few where the GP insisted on it despite pre-existing conditions like reflux or swallowing difficulties which are contraindications. Above all - someone with Barretts oesophagus was told she MUST take it.

In the past, it was assumed that a good dexascan meant you didn't need more than calcium and vit D which most people were happy enough about. But it is now emerging that the dexascan isn't as good as they thought - it isn't just the increased loss of calcium from the bones due to the pred that is a problem. Over a period of about 12 years on pred my bone density barely changed, even the local expert here was happy. But I still developed a compression fracture - and that is due to a pred-mediated change in the scaffolding of the bone that the cells are inside. So the need for bisphosphonates isn't based on the loss of density but this other change that currently is difficult to measure, it needs a special dexascan I think. It's like car or house insurance - you hope you never need it but it is there if you do.

I used the term "forcing" because it is really unusual to find a doctor explaining why - they just say "You need it because you are on pred" - that isn't letting the patient make an informed decision. And you will always find the people on the forum who didn't take it and were fine who say "I didn't need it" - I was one to some extent though I did always say if I was shown I needed it, I would take it. And I was and do. As I say, AA is a pain to take, people don't LIKE it, they often don't like taking medications at all, and just stop taking them. Then wonder why they have symptoms of something that medication was meant to prevent.

[tangocharlie in reply to Gc2596]

If you have a spinal fracture you'll be crippled and in pain for life as I am and taking AA won't bring your bones back but might stop you breaking another one!

[Excelsior80]

Im in a similar position, results nor far off yours, osteopenia and not yet discussed with GP (thats next week) and I just started some basic weight training (personal trainer as I wasnt confident in what I should be doing) with the idea it should help bone strength. I already walk a fair bit. I'd prefer not to take any extra medication if possible. ROS have exercise guides

[Gc2596 in reply to Excelsior80]

Thank you for sharing. Yes, many similarities in us and the Dexa scan results now too. You however, are titrating and obviously feeling well with it at a quicker rate than myself. I did get down to 5mg November '24 but kidding myself that if I coped with the return of aches I'd get there. Ostrich comes to mind! I do remember that when I queried the need for calcium supplements a locum GP (I've seen the same GP all other times) said as coming down didn't need them. At that point taking 7.5mg. It will be interesting to know the outcome of your review and what decision you take.

[Oh-my in reply to Gc2596]

My GP from the off gave me a diet sheet for calcium. Got the impression they weren’t keen on supplements. After a year another GP out the blue added supplements and Alendronic Acid to my prescription so I requested a DEXA scan which showed I was borderline osteoporosis and the notes recommended taking AA as preventative measure until I got to below 5mg Pred. Today I have tentatively got there so will be stopping AA. Yay! My GP left the decision to me so why did I take it ? Because over the years I have had several scans as part of longitudinal research at Bristol University. I did have well above average bone density so the drop was a shock for me. As for the supplements - I didn’t take them but ran my diet past my GP who was happy. I upped my Vit D, I was already taking vit K2. With hindsight I should have taken AA during the first year of Pred, not the second, but it wasn’t offered, and knowing me I would probably have taken the same risk/pathway. Hindsight is a wonderful thing. These days I do 50 heel drops daily and have invested in a weighted vest.

[Gc2596 in reply to Oh-my]

Thank you for your own insight. I noticed that you had a private Dexa scan. The report suggest my next one in 5 years. However, seems a long time whether or not take Alendronic Acid so you don't know whether progressing or regressing. I'm thinking whatever I decide 🙄 I will look into having one earlier. Different GPs it appears certainly take differing stances regarding vitamins etc. I intend having a chat with the ROS so will see if that helpful in coming to a decision. Once I've made a decision I'm generally fine, it's the getting there!

[Oh-my in reply to Gc2596]

I went private because it was available the next day! I would have to wait several months for the NHS scan. The prescription for AA was so random and really worried me. And as I'd been stuck on 11mg of pred for several months at that time I thought it best to find out more info sooner rather than later. My GP has put in my notes my request for a scan (NHS) in two years time. Two years being the minimum time. If your results are okay that's maybe why it's 5years for you but you have a good case (long term steroids) for requesting one sooner. I had 2 long chats with the ROS and it really helped.

[Gc2596 in reply to Oh-my]

Thank you Oh-my. I had about a 5 week wait so sounds pretty good compared to what your experience was. Really informative telephone conversation with a Royal Osteoporosis Society nurse today. Scan results, although Osteopenia, quite good/low risk. Suggested if decided not to take AA to discuss with GP and hopefully he'd refer on NHS again in 2 years. Apparently, ideally should be done on the same machine as another can skew results. My thoughts on a private one, perhaps in a year, not warranted as probably not long enough to show being much difference. Will be taking up even more of an increase in calcium diet wise and recommended exercises in addition to my walking reasonable distances. I hope your scan gives a more positive result and that you will share on the Forum

[Oh-my in reply to Gc2596]

I’m glad you have come to a decision. Taking another medication is always a worry. I get now why they say take AA for preventative reasons because for a statistical few of us Pred has an impact. I would never have guessed I would be one. My worry now is am I having too much protein in my diet as calcium in the diet is often associated with protein foods. There was something on the news yesterday about people having too much so I shall have to do the calculations. Maybe supplements are easier after all !

[Gc2596 in reply to Oh-my]

I thought I had but after very recent in depth comments, and a particularly scary one, I'm wavering again. Another recently diagnosed friend, given AA without explanation but taking, now been told her bloods show too much calcium so she's concerned too about that. Seems we can't do right for doing wrong sometimes!

[PMRpro Ambassador in reply to Gc2596]

The AA SHOULD be directing the calcium in the blood to the bones and that is why we are told to take calcium supplements when on a bisphisphonate. However - there are other causes of raised calcium and low bone density so her doctor needs to have a look at that.

[Gc2596 in reply to PMRpro]

She has an appointment and GP perhaps going to refer to Endocrinologist so hopefully will be resolved.

[PMRpro Ambassador in reply to Oh-my]

You need protein for building/maintaining muscle as you get older and when on pred. But you DON'T need the half a dozen eggs, 12oz steak AND the protein supplements that a lot of younger people imagine is necessary. That is who those sort of headlines are aimed at. Not us eating a normal diet and a bit of extra dairy for calcium!

[Oh-my in reply to PMRpro]

Yes agreed. And we need more protein when we are older.

I was so obsessed with keeping an eye on getting enough calcium because of taking AA that when I came to look at, say, my portion of Greek yogurt - it was in itself a quarter of the recommended daily amount of protein. Then there was the dairy milk, and the soya milk, and the kefir and…. Hey hang on I haven’t even got to the main meals! Not steaks or dozen eggs I grant you, more like a few nuts or lentils, but I thought I ought to check it all out as I’ve worked out pretty much everything else. Especially as there is not likely to be any marathon runs on the horizon

[PMRpro Ambassador in reply to Oh-my]

Just shows it isn't difficult to get your protein - but many people think because some is good, more is better and then aim for double or more of the RDA.

The daily recommendation is for 0.8g of protein per kg bodyweight. I'm 74kg, I should eat 60g of protein. Almost no food is 100% protein - but having done quite well for breakfast, if you have a 3oz portion of meat, you are going to be OK but not excessive I would think. Milk doesn't have as much as you'd think. Greek yoghurt is particularly concentrated.

todaysdietitian.com/pdf/web...

[Oh-my in reply to PMRpro]

I worked out that just from the milks and yogurts alone I was meeting my daily protein requirements (glass of milk at breakfast, another for supper and so on.) So I’m getting a great amount of calcium but I think there are many days I have been doubling my protein because of the main meals. I am going to have to look for another easy source of food based calcium that isn’t heavy in protein. To be honest my tap water is pretty good. We have very hard water.

It’s all very frustrating. You think you are doing well in one area and then find you’re not. There’s a lot to said for moderation in everything.

[PMRpro Ambassador in reply to Oh-my]

"There’s a lot to said for moderation in everything."

Indeed!! I don't drink milk like that - a litre in 3 1/2 to 4 days, in my tea. Don't even use it in cooking. I use a moderate amount of Greek yog but tends to be a binge at times! But love green veg and almonds. I have a tub of hazelnuts and almonds in view and take them out by the handful - I buy baking packs, 1kg at a time!! Much cheaper.

[Excelsior80 in reply to Gc2596]

saw GP today, she thought with the dexa scan results probably reasonable not to take a bisphosphonate just calcium and exercise for now .... side effects are rare but can happen .... and shes doing bone profile blood test ... said take calcium regularly and weights exercises will be good, also shes sending me some recommended exercises.

[Gc2596 in reply to Excelsior80]

Thanks Excelsior80 for providing an update. I see my GP on the 24th regarding titration and will discuss my concerns about going on Alendronic Acid (prescribed at time referred for Dexa-not taken as decided to await result due to concerns). We are same age/started Pred within 1 month of each other. However, although I got down to the 5mg dose you're now on I am currently on 10mg (clearly too fast for me). Hoping a slower decrease will prove effective. Your lower dose will perhaps have influenced her decision on calcium/exercise as opposed to a bisphosphonate. To be honest I'm hoping for the same outcome, perhaps kidding myself but will see. Are you now on AdcalD3? My Dexa results on my Bio and if you wouldn't mind sharing how they compare with yours might help me. From well informed posts on scans realise bone density not the whole story but the trabecular structure. On reading though there seems to be plenty about the quality of the bone laid down when on AA. This being brittle and forming over old bone as doesn't allow as much regeneration. May be a case of finding the negatives to support my thinking! It's definitely as quoted in my original post 'a quandary' and hopefully the 'brain ache' will resolve when I've finally decided, in consultation with GP, the route I'm taking 🙄.

[Excelsior80 in reply to Gc2596]

I think you are right, she was brooding on the dose and the time left to finish pred if nothing goes wrong. Looked up results and its

Hip: T score -1.7 Z score -1.2

Lumbar Spine

L1 T -2.3 Z -0.7

L2 T -2.2 Z -0.4

L3 T -1.9 Z 0.1

L4 T -1.7 Z -1.2

Overall, osteopenia.

[PMRpro Ambassador in reply to Excelsior80]

And osteopenia at the end of the range that is heading for osteoporosis. For the top experts, t-scores of -1.6 and worse are the borderline for initiating bisphosphonates in patients on pred.

[Excelsior80 in reply to PMRpro]

Trying diet and exercise first! Though they also said very unlikely to get a hip fracture, more likely elsewhere, in the report. Its not exactly that im scared of specific side effects, and my younger cousin takes AA with no issues, has osteoporosis .... but I hate taking anything unless I really have to. Take after my mother there .... I well remember her hiding her tablets in later years and claiming she definitely took them.

[PMRpro Ambassador in reply to Excelsior80]

Can only remind you that spinal fractures are pretty painful and can be devastating.

[Excelsior80 in reply to PMRpro]

Thank you! Not ruling it out forever and will probably speak to ROS

[Gc2596 in reply to PMRpro]

It does appear from scan results on previous older posts that the Lumbar spine T- figures are generally considerably higher. If others are below T-6 does this not skew the necessity to take bisphosphonates?

[PMRpro Ambassador in reply to Gc2596]

Sorry - don't get what you mean?

[Gc2596 in reply to PMRpro]

My fault. Meant T-2.5 (arthritic fingers🙄) Just wondering if an average T- score overall is taken into account wouldn't most Lumbar spine readings increase the average and lead to bisphosphonates being prescribed? Or, as long as one reading in that range be recommended to take despite more decent results in other bones? Ignore me if I'm talking rubbish or being ignorant!

[PMRpro Ambassador in reply to Gc2596]

But if your lumbar spine is lower in bone density - you probably need bisphosphonates. Spinal fractures are a very real risk and very disabling. It is the hip fracture that makes the headlines but the incidence of those was already falling when bisphosphonates came on the scene and there are a lot of factors to modify to reduce that risk. But spinal compression fractures can just happen by twisting the wrong way - or even spontaneously. I have a good bone density, worst score was -1.6 when I developed a compression fracture out of the blue. I only have one - TC has several with a similar dexascan report. They must be due to something else - poor trabecular structure is probably most likely and pred affects that. But if I had been told at the outset my t-score was -2.5 anywhere, I wouldn't have refused bisphosphonates.

[Gc2596 in reply to PMRpro]

Mine actually T-2.1 -1.3 and -1.5 (average T-1.6) and understand that over T-2.5 then comes into the osteoporosis range. Didn't have a scan until after 7 months of taking Pred so results may have been better if done initially and I've already deteriorated. As ROS nurse said not at all unusual for people around my age have osteopenia. I can totally see where you're coming from, despite not taking a bisphosphonate for many years but "getting away with it". Dependant on my conversation with GP in a couple of weeks want to see if he puts great weight behind going on AA or if reasonable, as in DLs initial response, to go down the supplements route at the moment and could perhaps reassess depending on how tritation progresses. I do understand the implications.

[PMRpro Ambassador in reply to Gc2596]

Pretty much EVERYONE gets the label osteopenia - and I don't for the life of me understand why they give the "average" since it can be meaningless if one area is much lower BMD and the others drag it into a better figure. Having an osteoporitic hip won't be saved from a fracture just because the spine is in perfect nick. Or vice versa. And sometimes there are some osteoarthritic changes that make it look denser because that bone is a different structure. It is quite complex really.

[Gc2596 in reply to PMRpro]

It certainly is and most of it way above my comprehension!

[Gc2596 in reply to Excelsior80]

Thank you for sharing. Your lumbar spine result fractionally (not a good choice of wording) better than mine. My hip lower at -1.3. You didn't say about the femoral neck (mine -1.5). Perhaps not the same bones scanned in everyone? I can see that your dose and possible length of time remaining would be a big factor so I lose out on that one. It didn't help my dithering speaking to a neighbour today whose sister was on AA and her jaw basically rotted away following a tooth extraction. Had her jaw remodeled and a plate to cover the lost bone. The Consultant said she was however, extremely unlucky. It is playing on my mind though. There is also the question of how 'unlucky' you'd be to suffer a spinal fracture? Devastating as it would be and so feel for especially tangocharlie's outcome. The fact I wasn't put on AA, or similar, immediately seems contradictory as from what I've read the worst damage to bones occurs within the first few months. Now I'm thinking this perhaps showing on my recent Dexa scan and might not necessarily deteriorate, if I continue to take other measures, much like you're thinking of doing. Vitamin k2 being a recent addition to my regime. In a way I'm looking forward to my GP review in 2 weeks, in the distinct hope my mind will be made up at that point. I too dislike taking any medication and until 10 months ago and Prednisolone coming into play took very little, for which I suppose should be grateful. Best of luck to you going forward.

[PMRpro Ambassador in reply to Gc2596]

The same bones are scanned in everyone - it is standardised. Not sure but I think you have the numbers the wrong way round. A score of -1,7 is closer to osteoporosis than a score of -1,5.

"... your BMD result is compared with the BMD results from healthy 25- to 35-year-old adults of your same sex and ethnicity. The standard deviation (SD) is the difference between your BMD and that of the healthy young adults. This result is your T-score. Positive T-scores indicate the bone is stronger than normal; negative T-scores indicate the bone is weaker than normal."

The larger the number with a minus in front of it, the lower your bone density is.

hopkinsmedicine.org/health/....

Just because the worse damage is in the first few months doesn't mean there is no point taking the medication later, the deterioration continues over time with and without pred. You can still prevent it getting worse and the bisphosphonate also stabilses the trabecular bone which is the scaffolding on which the bone cells "hang".

[Excelsior80 in reply to PMRpro]

I think I put everything but its reading off separate letters from the hospital, just scanned in not easy reading version! I do wish I had had the dexa scan at the start ..... its hard to know, and without this forum I would not have even heard of a dexa scan. It looks like, if I had the same results at the start Id have been recommended AA .... but also the results dont look very different from expected at my age, post menopausal woman not taking HRT ... maybe pred has made no difference. And its not easy to get another, to see how its going in a year or so.

[PMRpro Ambassador in reply to Excelsior80]

The z-scores are useless really - comparing rubbish with rubbish is meaningless!! But views have changed even in the last few years and most rheumies are a long way behind about such changes. I think AA created a bad atmosphere - very clever marketing in its early days promised the end of elderly ladies having hip fractures and ending up in a care home or even dead within a year. And of course that wasn't entirely true and over time the downside of AA appeared. The USA and its climate of "sue someone" brough the adverse effects into public view - emphasising the very low rate of really nasty things without supporting figures for the benefits.

It is a complex view - but I do know several rheumatologists who are really concerned about the resistance to taking bisphosphonates. Of course, some of it is made worse by the handful of prescriptions patients are handed at diagnosis without a careful explanation of WHY they are being used. The impression created is that they are to deal with the unseen adverse effects of another drug and so they wonder why take them in the first place. Taking pred becomes a no-brainer - it hurts otherwise! But dexascans don't tell the whole story - and that is a finding that must percolate through into the wider perception.

[Excelsior80 in reply to PMRpro]

Yes ... as I understand it at the moment, bisphosphonates strengthen bones and bad side effects are rare. But also there has been a lot discussed recently about strengthening bones in older ages by weight bearing exercises and so on. And if the bone situation is not absolutely dire that seems good to try because the strengthening might be more natural quality. I guess I should call ROS for advice!

[DorsetLady PMRGCAuk volunteer in reply to Excelsior80]

. I guess I should call ROS for advice!

advice often given here - and yes... as they are the experts...

[PMRpro Ambassador in reply to Excelsior80]

But it takes a LONG time and it is sometimes a bit late if your bone density is already low, It is also different for otherwise healthy oldies who aren't on pred. Pred is a very significant factor.

A T-score is a comparison of your bone mineral density (BMD) to the average BMD of an adult of your sex and race at peak bone mass which is assumed to be at or about age 30 - bones are fully formed but the deterioration of aging has not yet started. After menopause, that rate increases because of the loss of oestrogen. A T-score of -1 to +1 is considered normal bone density.

Osteoporosis is a condition where bone density is low enough to increase the risk of bone fractures. The risk of bone fracture doubles with every SD below normal.

But now it is known that density alone is not the only factor - naysayers to AA have said it for years, you can have lower bone density but the bone remains resilient to shocks and most fractures occur in people with normal bone density. But once you add in pred, the goalposts move. As you age, bones are more likely to break after less impact - just a fall from standing rather than a dynamic impact for example, losing your balance in the house rather than crashing your bike or, like me. a high speed cras h skiing! A "fragility fracture," which is a bone break that occurs from a seemingly minor fall, is considered a strong predictor of osteoporosis; essentially, if you break a bone from a relatively low-impact fall, it could indicate weakened bones due to osteoporosis. They are then often a broken hip - which can be devastating. My husband sustained a spinal fracture when he felt on the way to the bathroom. That resulted in a weekend lying in bed until a corset to support the fracture and prevent it worsening and damaging his spinal cord could be fitted. His warfarin dose was messed up, he developed a pulmonary embolism. The pain from the fracture was excruciating, he couldn't breathe deeply - he was lucky, and DIDN'T develop pneumonia, many older patients do. And that was all without pred!!

It isn't a simple story but reducing the risk of that may be the difference between a happy old age and a very painful and even curtailed one. And they have found that 3 zolendronate infusions has the same effect as 6 - so you get 3 infusions at 1 year intervals and then 3 years none. And reassess. But in the meantion, the protection started within a couple of months of the first infusion.

Risk factors for osteoporosis:

Being female

Asian or Caucasian ethnicity

Long-term use of oral glucocorticoid medications

Menopausal or postmenopausal status

Inactivity or a sedentary lifestyle

Small body build

Smoking

Family history of osteoporosis

[Excelsior80 in reply to PMRpro]

also ... how do they work out the T scores and Z scores? I am ok with statistics in general but not sure where they get the data to compare with.

[Obscureclouds]

I think some rheumatologists take the view that if you are going to be on long term steroids (particularly starting on a high dose) it’s best to start protecting your bones at the outset . May be an age thing but certainly what I was told - I was aged 75 at diagnosis (Dexa scan 6 months before for another issue had been fine) I was prescribed Adcal-D3 plus Alendronic Acid. When I read about AA I thought no way as I’ve always had difficulty swallowing pills. Instead I’m having an annual Zoledronic infusion. Whilst I probably didn’t need it at this stage I took the view it was better than waiting til osteoporosis crept in on top of everything else. So many choices we have to make as what’s right for one may not be so for another.

[tangocharlie in reply to Obscureclouds]

Even the early days of being on steroids are dangerous according to a talk by esteemed Rheumatologist and bone specialist Dr Claire Vandevelde. It's a choice, or more accurately a gamble whether to take bone protection or not

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Early days more dangerous - higher doses, especially if on GCA ones…

[Gc2596 in reply to DorsetLady]

I'm currently on 10mg (started on 15mg July '24) for 2 months after GP upped from 9mg. Review in 3 weeks. Doing pretty well, so far, on this dose. Got to 5mg (October '24) but too quickly and knew about it. What sort of level is 10mg classed as? Perhaps I've 'missed the boat' to decide whether to now take AA after being on Pred 8 months? I also noticed possibly of joint pain on AA. Although wouldn't necessarily occur another thing that put me off as have osteoarthritis (some fingers/one big toe) and don't want more discomfort. On saying that Pred helping that at the moment but soon felt again on lower dose.

[PMRpro Ambassador in reply to Gc2596]

Never too late to start - and better now than when you have had a spinal fracture,

10mg is the upper end of low dose - but they say they can still identify pred-effects at 5mg and below. I haven't had any more discomfort after the infusion - some people don't. Not everyone gets the effects, no-one gets them all and some get none.

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

As PMRpro has said never too late to add in AA, it will help, but some damage may already have been done… how much it’s impossible to say.

[Excelsior80 in reply to Obscureclouds]

I read that they automatically recommend you start AA without Dexa scan if over 65. I was just under the age limit and didnt (i think that was on rhe charity website resources)

[DorsetLady PMRGCAuk volunteer in reply to Excelsior80]

It’s in the guidelines -para 6

BSR guidelines para 6 Bone health

Para 6 ) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A􏰁).

A. Individuals with high fracture risk, e.g. aged greater than 65 years or prior fragility fracture

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

B. Other individuals

Calcium and vitamin D supplementation when starting steroid therapy.

DEXA scan recommended

A bone-sparing agent may be indicated if T-score is -1.5 or lower.

C. Individuals requiring higher initial steroid doses

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)

[Excelsior80 in reply to DorsetLady]

thats it, i got the calcium and vitamin D option but no dexa scan until I asked for it

[Gc2596 in reply to DorsetLady]

I already took D3 (1000) in winter and so just continued having read the benefits whilst on steroids. Never advised or offered calcium supplements. Unless because the initial blood test showed sufficient in my bone profile test. This was not requested in following bloods.

[Excelsior80 in reply to Gc2596]

My initial calcium level was ok though, and I was given calcium ... was a bit worried Id be getting too much ....I do have a lot in my diet already

[Gc2596]

Thank you. Yes, all seems a veritable minefield for me.

[tangocharlie in reply to Gc2596]

There are risks from taking any meds, but the risks and likely consequences of not taking bone protection meds far outweigh the risks of getting fractures as a resultof not taking them, IMO. So it's more like an 'on balance is it worth it?'decision. To me it's a no-brainer given all I've learned the hard way

[tangocharlie]

My sorry tale has been mentioned in many posts and I can't stop banging on about how even 'normal' DEXA scans are pretty useless at predicting whether you'll have fractures. There is no way of knowing what state your bones are in - DEXA scans can only give a rough guess based on echoes adn algorithms. So whether to take a form of bone protection depends on your attitude to risk - like whether or not to buy travel insurance. You might not need it but if you don't and things go wrong you're in big trouble

[Excelsior80 in reply to tangocharlie]

very grateful to know your story too 🙂

[Excelsior80]

I just heard of a friends sister who was fairly unmonitored on steroids during lockdown, they didnt even work for her and shes got vertebral fractures now. Though also, because they didnt work shes been in pain and unable to exercise. For years. One of the people who makes me feel very lucky so far

[Gc2596 in reply to Excelsior80]

Is that making you revise your decision to not take a Bisphosphonate at the moment? Seeing my Osteopath later today so will no doubt have a 'bone' discussion with him too. Although go just every 4 weeks always feel better after my muscles have been worked on.

[Excelsior80 in reply to Gc2596]

finding decision quite difficult! trying to weigh up options I dont fully understand....I was happy not actually osteoporosis and pleased to start programme of exercises which i am enjoying. Now bit more hesitant. What would seriously cause a rethink is needing more pred, a flare or something .... I am hoping otherwise its done its worst by now .... but maybe not.

[Gc2596 in reply to Excelsior80]

Can completely understand, my decision making all but gone out the window, swaying one way then the other depending on what I read/comments. Just discussed with Osteopath who was informative and at same time could see my trepidation. Said the bone made up by AA not perfect and went into quite an in depth explanation, but much better than nothing. Much on the lines of PMRpro. Advised to weigh up everything, read 'papers' which I have with differing views that's what's driving me 'potty'. Had I not been told about the jaw osteonecrosis a neighbour's sister had I'd more than likely not have questioned. But I was and did! GP appointment 24th and after Osteopath even tried to bring this forward, unsuccessfully, so that I can bring this dithering to an end. Doesn't help that if I'd not mentioned to GP 2 months ago friend on AA I'd have walked out without Dexa/4 weeks prescription of AA. So telling myself I'd be in same position now ie. not taking. I fully relate to you if have a flare, like myself, and need to increase as that a factor for me being presently on 10mg. I'm doing everything otherwise to help myself, always been active, but the possibility could be on Pred for years needs to be a prime consideration. I wouldn't want to be in a position of tolerating great pain but not increasing dose because worried about effect on my bones. It may have "done it's worse" with me too but again unknown. Thank goodness for people on here willing to listen to my, and others, questions, concerns, and crystal ball gazing. I'm too much of a 'what if' person for my own good 🙄

[Fatsiajaponica]

I am also one of the ditherers....decided not to take it, listened to the expert on bones at the PMR charity zoom meeting and changed my mind, then GP called me to discuss AA, he was very persuasive as he had had PMR and osteoporosis as a result of long term steroids. Started taking it in November 24 after 7 months on pred, at times as high as 60mgs but had reservations still, then Dexa scan . Scan normal, in fact high positive scores so now have stopped. I thought a) any damage had been done in that 7 months b) years on HRT have helped maintain my bones (still on it). It is a minefield and I understand and respect the points made byPMRpro and tangocharlie on the limits of a dexa scan. I think if my dexa scores were lower or in the osteopenia range I would take AA. I will have another scan in 18 months, who knows, may be on a very low dose of pred by then🤞I wish you luck with your decision making.

[PMRpro Ambassador in reply to Fatsiajaponica]

HRT should count in many ways as a substitute for bisphosphonates though not entirely, Was there any comment about the positive scores as they can be due to osteoarthritis in the bones?

[Fatsiajaponica in reply to PMRpro]

General comment was 'classification normal'. T scores 3.6 to 5.9 for spine (higher the further down the spine) Neck/femur 1.1 to 1.7 no minus signs. Thought this was pretty good? No mention of osteo arthritis, no symptoms. Do have bursitis in left hip, this seems common with PMR?

[PMRpro Ambassador in reply to Fatsiajaponica]

Those are exceptionally high density readings and may be a mixed blessing as explained here

pmc.ncbi.nlm.nih.gov/articl....

I wouldn't be worried about the neck and femur - but the spinal ones do seem to me to be outliers and requiring an explanation.

Yes, hip bursitis and PMR do go together - I posted somewhere today that in one study ALL patients had hip bursitis at MRI!

[Fatsiajaponica in reply to PMRpro]

Grim reading!!! Over 30% unexplained so I'll put myself in that category😀 I'll find your post re bursitis.

[PMRpro Ambassador in reply to Fatsiajaponica]

pmc.ncbi.nlm.nih.gov/articl....

Sorry, should have added it last night but was in a hurry

[Fatsiajaponica in reply to PMRpro]

Thank you

[TandemTime in reply to PMRpro]

Interesting link for my minus 4 Dexa result thank you

[Gc2596 in reply to Fatsiajaponica]

Yes, as you say a veritable minefield. The question of how much damage possibly done without AA for 8 months, for me, a question I'll pose with my GP, and what to expect going forward if don't but do the most I can to help mitigate. I suspect the information on here will have been more in depth/relevant. Interesting to hear his point of view though, particularly as he himself has previously taken Pred.

[Excelsior80 in reply to Gc2596]

GP phoned today saying considering everything they recommend lifestyle change not medication, levels well within non intervention range. so carry on exercise, walking, calci-d etc. I was in the car in the snow and didnt think to check but assume they think this because steroids low (4 from next week).... I will remember to ask for a rethink if i do flare and need more.

[Gc2596 in reply to Excelsior80]

That sounds good news and, certainly at the moment, backs up your preferred route of doing what you can yourself rather than take a bisphosphonate. Your tapering going extremely well too. Only a month ahead of me starting Pred and to be on 4mg you must be pleased with being at that level now. Perhaps you'll be one of the 'lucky' ones and corroborate a lot of medics speeling out the 2 year and done theory. Which of course we know from this forum seems rarely the case. I'm tentatively reducing from 10mg to 9mg next few days. Been there done that so will see going forward this time! Wishing you all the best with your endeavours and continued progress.

[Excelsior80]

The standard taper must surely work occasionally ... but still plenty of time for problems. It is what I preferred but I was having second thoughts 🤔 ... happy for now anyway. Good luck with your own choices!

[PMRpro Ambassador in reply to Excelsior80]

It isn't that "a taper works" - you can only taper off pred when the underlying disease process has burned out and gone into remission. How you taper has absolutely no effect on the underlying disease. The taper conforms to the illness, not the illness to the taper.

[Excelsior80 in reply to PMRpro]

i know, didnt express it well ... i mean there must be people whose disease process fits the standard taper, or why was it invented? Even so its long, if i dont slow down which Im aware i may have to, its months to go, with 6 weeks at each dose.

[PMRpro Ambassador in reply to Excelsior80]

It is just a concept out of the air to fit with the 2 year story. But every single taper I have ever seen says they may have to be adjusted for the individual patient. It is a misunderstanding that you can taper to a fixed schedule - and I haven't a clue why supposedly intelligent beings think it works when pred CURES nothing, it is a management strategy for an open-ended process.

[Excelsior80 in reply to PMRpro]

I assumed its a tentative framework that can change with individual responses, but if it never fitted anyones case they should maybe start with something different? Or not have an initial plan at all?

[PMRpro Ambassador in reply to Excelsior80]

It is an example - and Prof Vanessa Quick (a trustee of the charity) wrote a paper about how her department in Bristol went about tapering and I have quoted it many times. Then it disappeared from the usual source which was a bit annoying but it can now be seen here (I hope):

researchgate.net/publicatio...

Their approach reduced the rate of flares from 3 in 5 to 1 in 5 - and I am absolutely convinced the key is that they stick at 10mg pred for a YEAR before continuing the taper. That year covers a period where flares are very likely if you reduce the dose too far and once a patient starts to flare and yoyo the dose of pred, it tends to go pear-shaped and they get into all sorts of trouble when trying to reduce the dose again.

[Gc2596 in reply to PMRpro]

A very interesting study and I may be incorrect being relatively new but the 1 year at 10mg doesn't seem to have been a feature of the posts I've seen? You will see from my Bio that I obviously tapered too quickly to 5mg and ended up at 9mg then back again to 10mg. As posted earlier trying 9mg shortly, after 2 months at 10mg. A bit confused now whether the idea would be to stay at this level longer? My GP did say at last appointment, assuming feel ok (which do) he would be titrating more slowly. Not sure in his opinion this would be by 1mg or by 0.5mg and for what duration. I've looked at the various tapering plans with the thought of bringing one, or more, up with my GP to see what his response is but don't want to come across in a wrong manner and risk what is a reasonable relationship at this time.

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

It is mentioned a lot, but unfortunately it doesn’t seem to be practised by many Rheumies…apart from the authors, of course.

Personally I would stay at 10mg for another month or so, and then reduce by 0.5mg a time [in fact the most quoted guidelines do suggest below 10mg that reductions be every 4-8 weeks]. Whether that be 1mg every 8 weeks, or 0.5mg every 4 weeks is personal choice. 😊 …. Something else the guidelines state, but often overlooked by doctors..

Actual wording - para 5

However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

[PMRpro Ambassador in reply to Gc2596]

There are over 40,000 posts in total - hardly surprising you haven't many as yet! I haven't mentioned it quite as much recently since I couldn't give a free link for members to read but I have just found this one. Until he retired, Prof Kirwan, together with Prof Matteson from the Mayo at ROchester, were regarded by a friend who founded a PMRGCA charity as being at the top of their game in PMR>

Their driving desire to reduce the dose of pred as fast as they can, means the idea of a year at 10mg is anathema. Another extremely able rheumy in the PMR field likes to keep patients at 5mg for up to 9 months as he finds that makes the next stage as adrenal function returns easier. These pauses are based on years of experience - something all too few GPs and even rheumies have.

What we tend to encourage is to continue tapering from 10mg if you are doing and feeling well but in smaller steps and longer intervals than most doctors use. And to be watchful - any signs that you are approaching the destination of lowest effective dose should be taken seriously and not put down to anything imaginable besides PMR not beng controlled.

Feeling OK at a dose doesn't mean you will still feel OK at 1/2mg less - and THAT is something a lot of doctors can't get their head around, that 1/2mg can make that much difference. They are so used to using pred to cut inflammation while another drug does its job, whether it is antibiotics in a chest infection or a DMARD in a rheumatological condition, and then stopping the pred in large steps and quickly, that they struggle to change their practice. I was at a meeting with Prof Mackie of Leeds and she said that if the first approach to tapering didn't work - and sometimes it does - then she changed the approach, slowed it down, as would any doctor. As the patients present fell about laughing she looked surprised and actually asked - don't ALL doctors do that? She was quite horrified to find that when a patient gets stuck and flares some start from the beginning again but with no change in rate, others immediately insist on adding methotrexate - even at doses under 5mg where the benefit is doubtful since it only works for some, and others even assume it can't be PMR causing the pain, "if you get pain returning it isn't due to PMR".

PMR is a chronic disorder that can last a long time - and until that understanding percolates through, you may struggle with a doctor's proposed approach. It is obvious that after only a couple of months you aren't ready for under 10mg yet - but when we first started on the forums, the inital approach was to leave patients at the 15mg starting dose for at least 6 weeks, then 6 weeks at 12.5mg before trying 10mg. It took at least 3 months to get to 10mg - now the pattern is barely 3 weeks at any dose, often not long enough to know it is still enough. If you have a lot of accumulated inflammation and start to taper soon, you don't have the same buffer zone, just the new morning batch of inflammation can be enough to tip you over the edge before the new dose of pred takes effect. The assumption may be made that this isn't PMR after all - rather than poor management.

[Gc2596 in reply to PMRpro]

Very interesting reading. Should there have been a link attached? Rightly or wrongly after 2 months on 10mg I would like to see if I'm ready for a 1mg drop and realise this is the unknown. If successful I fully take on board the advice going forward of DL.

[PMRpro Ambassador in reply to Gc2596]

Only the one I gave above that I gathered you had read.

The only way you know is by dipping a toe in the water - you try a small reduction, preferably using one of our slowed or smoothed tapers and see how you get on. You may get a bit of steroid withdrawal - vague symptoms immediately you drop the dose that improve over a week or so. Symptoms that appear after a day or two and get worse are signs of a flare - cut your losses and go back to the last dose, wait a month and try again.

Just never be in denial about the return of symptoms and NEVER try to bluff it out! PMR will always win

[Excelsior80 in reply to PMRpro]

I was assuming the taper I'm on was based on more than guesswork! 15 to start, drop 1 mg every 6 weeks .... but thinking about it, before I got pmr I never heard of it, now I have it I found 6 people I know in real life have had it and only one of them did the same plan and it worked, one it worked but pmr came back a year or so later, two were said to be about to stop kast spring but havent, one back up to 5 after a flare one still unable to get off 1mg. I know people here have more trouble reducing too but I wasnt sure whether people who it all went smoothly for are less likely to join forums. Will there be different suggestions in the new guidelines they are working on PMRpro ?

[PMRpro Ambassador in reply to Excelsior80]

No idea at all!! Outwith my paygrade!! There is a patient on the committee but I don't know her history with tapering - I tend to assume people involved with the charity may have had harder journeys.

"About to stop" - it means nothing that you are fine at 1mg. One mg can be loads to manage the inflammation being created by a low level of disease activity - but as we keep saying, even a dripping tap will fill a bucket until it overflows. One in 6 getting off pred in under 2 years is probably par for the course. A year before PMR returns - not that common, up to 6 months or so it is probably the leftovers of the first episode and wouldn't have happened had they taken longer over that last 1/2mg. but a year does suggest the autoimmune part underlying the inflammation had gone into remission, Relapses can be anything from a year to 15 years in happening - the predilection for the immune system to go wrong remains for life but it may not go wrong and cause PMR necessarily, it could be something else that comes along to play.

Are they less likely to join a forum? Depends - ones with problems do often find a forum in despair when all the doctors' promises come to nothing or they are being blamed for not getting off pred. On the other hand, newly diagnosed patients have no idea what is to come though they may leave without a word when they have no difficulties.

[Gc2596 in reply to PMRpro]

Luckily, or not for them, I have 3 friends and 1 acquaintance with PMR. My closest and 'walking buddy' certainly falls into the 6 months scenario. In denial "might be something else" and after 6 months off Pred had, under GP instructions, to go back to 5mg. Then went up to 7mg of her own volition as pain not controlled and now once again tapering too quickly IMO. GPs idea to be at 3mg within 2 months and to remain there for 6 months so now she's wanting to get to this level as 2 months along. I'm hoping to learn from seeing this outcome, in addition of course to taking a great interest in the information here.

[PMRpro Ambassador in reply to Gc2596]

Definition of madness: repeating the same action and expecting a different outcome! Most of the people on the forum come in the once bitten twice shy category ...

[Gc2596 in reply to PMRpro]

I include myself in this and will now take a more informed approach to tapering.

[Gc2596 in reply to PMRpro]

I include myself in this and will now take a more informed approach to tapering.

[Gc2596 in reply to PMRpro]

Yes, agree. When at 10mg initially it was only a matter of 7 weeks before 5mg. This was the regime advised by a locum GP (not that I'm questioning being a locum) he had to stand in last minute but was the first time not received continuity. No in-between appointment or perhaps phone consultation to see how I was doing. Needless to say I was was totally bluffing with the return of my symptoms. Thankfully due to yourself and many others I am now much more aware. In anticipation I had previously looked up, and written down, the possible differences between withdrawal and flare and thank you for reminding.

[tangocharlie in reply to PMRpro]

You need to be speaking at Rheumatology conferences!

[TandemTime in reply to Gc2596]

I am liking 0.25 at a go rather than 1mg. Then waiting to see how I feel...its less scary !

[Excelsior80 in reply to Excelsior80]

I think having a plan did stop me trying to reduce faster when I didnt have too much trouble so far .... as did peoples experiences here. Theres a strong temptation to move faster which would probably have been a bad idea.

[PMRpro Ambassador in reply to Excelsior80]

There is indeed - especially when it is a doctor pushing at you to get off the dreaded pred!!!

[Gc2596]

Thank you. Will update on how I'm doing and Alendronic Acid dilemma after seeing GP on 24th.

[TandemTime]

I can't get on with the Alendronic acid tablets which I imagine are cheaper for the NHS. However only minor stomach issues or none with Bonesto which is it in the fizzy nice tasting form. Might be worth a try whilst you are making up your mind about an infusion. I have no pain with the tablets just need to rush to the loo which is unhelpful!

I always plan an hour of a later start the day I take them just to be relaxed in case.

I am hoping when I get my infusion my body will be more sympathetic having been primed but may be that's wishful thinking! Currently on wait list.

I also go for a dental clean every 4 months which adds up but is my insurance...the person who had the unfortunate time with the jaw might have had poor teeth etc to start / a dentist who did not understand not to do major work until month 10 to 12 after an infusion / or might have just been very unlucky.

Good luck.

[Gc2596 in reply to TandemTime]

Thank you. I've no doubt, after consulting GP shortly as to whether or not to go on the AA he prescribed this will be his first route to see if tolerate.

[TandemTime]

Good luck. Let us know how you get on!

[Gc2596 in reply to TandemTime]

Will do!