DEXA dilemma: Morning all. I posted my recent DEXA... - PMRGCAuk

PMRGCAuk

11,813 members21,561 posts

DEXA dilemma

Nerak12
Nerak12

Morning all. I posted my recent DEXA experience on Sheffield Jane’s thread the other day, but thought my own thread might be helpful.

Briefly, i was due to have my 2nd DEXA scan in May at the local NHS hospital. Covid19 happened, I didn’t get an appointment. Understandable, but disappointed as have Rheumatologist app’t coming up on 10th August and she has been pressing me to go on bisphosphonates. Have been on pred since Nov 17 & DEXA in May 2018 showed I had some osteopenia and mild osteoporosis, but I wasn’t on any vit D or calcium and I’d had a hysterectomy induced early menopause and only very short period of HRT.

Commenced on High dose Vit D course & then regular supplementation and changed diet and increased exercise. Agreed to defer bisphosphonates until results of 2nd scan due May 2020. So, an important scan.

Last week received letter from hospital to say all non-urgent work being cancelled and that the radiology team had reviewed my records and concluded “it is it not appropriate to undertake this imaging examination at this time”. 😡

Anyway, cut a long story short, I have written back to the hospital pointing out the error of their ways!

Meanwhile, OH said “Go Private”. I’m a retired NHS Sister, so this doesn’t sit comfortably with me. Net result though is I found a fairly local private hospital who does Dexas. Rang GP Thursday and asked for a referral. Private hospital rang me yesterday. I have appointment for scan 5th August. £190.00 I can ill afford to spend, but health comes first. I have an important decision to make and it can’t wait. I will have the results in time for my rheumatology appointment on 10th Aug and can make an informed decision. This has taken a huge weight off my mind. Information is power.

I am fortunate. I have knowledge, don’t suffer fools gladly and not on benefits. For many people the decision to deny them screening and diagnostic tests will result in distressing outcomes. The letter I received from the Trust opened with the statement that they are “moving clinical staff from their planned work to ensure they have enough nurses and doctors to care for those with the greatest need. This decision has been made at national level and non-urgent care will not be prioritised during restricted access.” “As a result, ALL non urgent activity has ceased with IMMEDIATE EFFECT.”

The Trust is not currently overwhelmed with C19 patients! It is struggling for other reasons (major staff shortage, summer holidays, lack of beds, money etc) and the Govt is wetting itself that people are going to die due to non-COVID problems that have not been diagnosed/treated during the crisis because of lack of NHS capacity. They have a huge back log of work and A & E is back to its very busy pre-COVID state. We have a perfect storm!

So fellow PMR sufferers, be prepared for cancelled appointments and having to fight your corner. Many of us have struggled to get the care we need since diagnosis and it’s about to get worse. Stay strong, stay safe, stick to your guns and good luck.

76 Replies
oldestnewest
PMRpro
PMRproAmbassador

I DON'T like your post really - I clicked the like button to show solidarity. I worked in the NHS too - and going private doesn't sit well with me either.

Casia
Casia in reply to PMRpro

After a really bad experience with the NHS some years ago, resulting in a painful death of someone close, I took out private health insurance as I got very stressed out and thought that if I ever needed it, I’d want a quick diagnosis and treatment. I’m not wealthy but health is a priority and I haven’t regretted it. What I regret is that we don’t all have access to consistently high standards of care or service whether it’s private or NHS. By using private healthcare as I recently did for my hip surgery, the surgeon gave up his weekend to do it whilst treating his NHS patients during the week. I feel somewhat reassured that by being treated privately an NHS patient was able to get my place on the never ending waiting list for elective surgery.

Ha, I just came in to reply with exactly the same comment as you ... except I never worked in the NHS ... but it’s awful that In extremis going private would appear to be the only option at the moment ... it’s not a good situation overall 😥

Yep! And we all pay our taxes, part of which is to pay for the NHS - “free at the point of delivery for all”. If we all need to pay a little bit more to ensure that happens, surely that would be better than the position we are in at the moment . Prevention is always cheaper than cure and would ensure we have a healthier, happier and more productive nation. Sunday sermon over 😀

PMRpro
PMRproAmbassador in reply to Nerak12

Absolutely - and you may preach it every day as far as I'm concerned!!!

I totally agree!!! Proactive and preventative action would solve the majority of the problem for sure 😃👍

I am planning to ask rheumy for a DEXA scan but won't hold my breath. Like you, going private is a very difficult decision for me. I fully support the NHS and afraid this lot in government may sell it down the river.

There is some 'left hand/right hand' stuff going on I suspect. One of my GP's said she thought I ought to have a DIY test but not possible to get it analysed during the lockdown: a week later my own GP ordered the test and it was done.

I suppose that telephone appointments are still ok?

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

Never mind left hand/right hand. The left hand doesn't know what the left hand is doing! Ditto for the right ...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to ChinaWuntoo

I noticed yesterday that my local surgery had put up comments on it’s Facebook page regarding results of a random NHS survey held recently.

They seems genuinely surprised that their overall “level of satisfaction” had reduced since the previous survey!

Maybe something to do with not being able to get an appointment without an enormous amount of hassle - and then only a telephone consultation unless you’re dying!

During Covid-19 many GP surgeries appear to have become Ivory Towers - with a new mantra - keep the riff-raff out.

PMRpro
PMRproAmbassador in reply to DorsetLady

"disreputable or undesirable people."

who you would think just might be their reason for being doctors wouldn't you ...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

....one would hope so, and I’m sure there are many that feel that way...but I have to say I don’t think some GPs have come through this covered in glory, unlike colleagues elsewhere.

PMRpro
PMRproAmbassador in reply to DorsetLady

That is the impression I am gaining ...

Not here I hasten to add - I've seen 2 GPs (plus a baby learning) f2f in the last week. And I wasn't even ill! Two were seen during a HOUSE call ;)

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Do you photographic evidence?

PMRpro
PMRproAmbassador in reply to DorsetLady

Photographic evidence? Me? Oh ha!!!!

Or at least, not for the double sighting - just OH's witness statement. But as the result of the other one I do have a new driving licence - with photo of me ;)

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Oh, does that mean you are of a certain age then??

If so, welcome !

PMRpro
PMRproAmbassador in reply to DorsetLady

No - all licences are renewed here every 5 years, with medical. Certain licences are done every 3 years - HGVs, certain medical conditions, maybe over 70. The medical includes a sight test and reaction times. Age is irrelevant. So now I have a licence until my birthday in 2025 ...

The UK gubmint misses all sorts of tricks with renewals of all sorts of things - steady income for them and keeps photo shops in business, And I have to pay the doctor who does it for his time too. Plus there is a great incentive for the doctor to be honest - they have an official position and if someone is found to be driving who shouldn't because of a health condition or vision the doctor is likely to get pinched too and lose his job ...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Age is irrelevant!

my personal motto - but sometimes the state disagrees🤣

Hi, I have posted recently about availability of DEXA scans with self-referal in London (I don't know where you live?). I know about this place as I was sent there by my private knee surgeon when I explained that my insurance did not cover me for sporting injuries and he was trying to save me some money. If you send me a PM I will give you their details. I think a DEXA costs from £65.

Thanks Moaning Violet that’s sweet of you and much appreciated. I think as I have a definite appointment now for Wednesday, I’ll bite the bullet on the price of my local one this time. I’m not far from London so will definitely remember if I need any other tests and can’t get done on NHS. Thank you again 🙏🏻😊

Moaning Violet, have sent you a PM as I am in London and rheumy may refuse a scan.

Hi ChinaWuntoo, I messaged you the details. Good luck with your appointment.

Yes, many thanks, got all the info you sent. I await developments with my rheumy.

Just a thought to throw out there to everyone: I've realised that I might be lucky to have a GP who knows little about PMR and is willing to listen to what I say! With the support of so much from this Forum, I feel confident that I know a lot about PMR. So maybe it's not such a bad thing if our GP's are ignorant of PMR so long as they are 'patient-led'!

I’m told the RD&E at Exeter are running with a wait of a few months at the moment. They say I should hear about an appointment in the autumn.

Hope you don’t have to wait too long. My local Trust just said I could ask my doctor to put in another request when normal service resumes. How am I supposed to know when that happens? Could be dead by then!!

I had Dexa scan 4 years ago and my reumatologist had recommended another before a 2nd infusion to help strengthen the back. I too had the appointment moved but I was so afraid of having another fracture that I went to my Doctor, he wrote to the rheumatologist and I was seen in a week, with some good results on bone density. RD & E was empty no waiting and a new Dexa machine, but they only have one machine there. Now waiting to see what the treatment will be if any.

Don’t feel guilty about going private

Nerak12
Nerak12 in reply to Daffodilia

Morning Daffodilla. I know and maybe I shouldn’t feel guilty and for some good reasons too. But .....I do feel guilty, because I believe in equality of opportunity. I know that without ones health we lose an irreplaceable part of our life. I feel guilty, because over the years of working in healthcare I’ve seen so much ill health and suffering caused by people’s inability to access good quality healthcare, or just basic care, when they needed it. More and more so of late. More often than not this has been through no fault of their own, but because of poor education or through inability to access appropriate early intervention services. So, I consider myself very fortunate, I’m not rich, but as I said elsewhere I’m not needing benefits. Im lucky I’m not on my own now, so I have emotional and physical support when I need it. I’m reasonably well educated and so I’m able to understand the implications of my actions on my health and because of all this I’m motivated enough to do something about it. Others just aren’t so fortunate and I feel bad about that and for them. I love life and I do guilt well too!! 😀

Hi. I too received the letter and although I can understand the reasons why I was disappointed as I’ve waited for 2 years for this scan. Have been told by GP to stop my D3 and calcium tablets as my calcium levels are high. So no protection at the moment.

I’m in a similar position regarding having to make a decision about another infusion. Last one was not a good experience for me. Only just feeling the affects are leaving my body now. 1 year later.

I have made enquires for a private scan only to be told by the receptionist that she didn’t think they are doing it at the moment. She would get the department to phone me. Never happened. So will have to find another private hospital and try again.

Good luck with yours and hope the results mean you have more of a choice with medication.

PMRpro
PMRproAmbassador in reply to keeptalking

What is high? Calcium or vit D or both? You can get just vit D supplements - they are also important. And if your calcium is high - is the GP checking it again soon and also doing a parathyroid hormone check?

parathyroid.com/high-calciu...

keeptalking
keeptalking in reply to PMRpro

I think it’s just the calcium that is high. Can you say a bit more about the parathyroid hormone test. As I know I have ‘multi focal nodules ‘ on my thyroid because of a ultrasound scan I was given for CLL leukaemia. It would be good to hear from you before contacting my GP. She just told me to stop taking the tablet. It was combined vitamin D3 and calcium. She said she’ll be letting my rhumb. And haematologist know. But I’ve heard nothing from them.

PMRpro
PMRproAmbassador in reply to keeptalking

That's why I gave you the link - I know enough to know that blood calcium levels are rarely high because of diet/supplements but if they are high the parathyroid hormone test needs to be checked. Just in case.

But very rarely calcium can be high in CLL so maybe that's it.

keeptalking
keeptalking in reply to PMRpro

Thanks for that. Is the parathyroid test done with just the blood test? As my gp gave me a blood test to check thyroid levels. It came within normal range. Or is something else that I need to ask for?

PMRpro
PMRproAmbassador in reply to keeptalking

Parathyroid hormone is a blood test but would have to be requested by name - the parathyroids aren't anything to do with the thyroid so it isn't included with the thyroid panel.

Nerak12
Nerak12 in reply to keeptalking

I’m sorry to hear about your experience. PMR is bad enough without having to suffer additional problems because of drug side effects. I’m having to weigh-up pros and cons of taking bisphosphonates and methotrexate as I have been unable to maintain below 8.5 of Pred and despite doing everything else right have been border line diabetic and osteoporosis on previous tests.

I initially spoke directly to the imaging department of the private hospital to find out the price and availability of a DEXA. Then I rang the GP surgery and spoke to the medical secretaries to ask for a referral. It might be worth you trying that route if you haven’t already. Good luck!

Do you take Vitamin k2? I have to keep My Vit D3 levels high as part of controlling my Primary Progressive MS by dietary and lifestyle methods (thankfully this appears to be working over a 7 year period) but I don’t like to jinx it by bragging 🤪) So I take vitamin K2 supplements to ensure that any excess calcium from the high D levels is kept in my bones rather than circulating in my blood. My recent blood tests showed my calcium levels as normal which is reassuring But I too am awaiting word on a Dexa scan so I’m following the Dexa threads with interest 😊

Morning! I used a Vit K2 spray when I first started taking Calcium etc. Probably should continue. Thanks for the nudge! 😀

You’re very welcome. I’m just paranoid about getting ‘stones’ ... as I have a very low pain threshold☺️, and I’m also trying to balance my Slightly conflicting MS dietary control ‘rules’ with my PMR/Pred dietary advice 🤪so I’m constantly researching nutritional stuff and dietary implications of EVERYTHING🙄🙄...

nothings ever simple is it? 😊

Good luck Nerak12!

I have had a rash of tests come through all at once. I honestly thought this meant the NHS was attempting to clear its backlog - or somehow I have got the secret password ( worrying in itself). I am in South Yorkshire. I wonder if these decisions are being taken regionaly? Or is the second wave upon us and I slipped in under the door?

It is outrageous that you can get crucial tests, only if you pay. I thought we were on the brink of learning something about priorities.

PMRpro
PMRproAmbassador in reply to SheffieldJane

It very much depends where you are - some regions are well supplied with dexascanners, others not. Supply and demand - and a government that is less interested in prevention than the dramatic effects that catch the headlines ...

Hi Jane and thanks for the good wishes.

I’m afraid I think different trusts are probably responding to the government’s directive “to stop all non-essential work” in different ways depending on their management culture, competency and capacity. My local trust was in special measures for a few years and has got through 7 or 8 chief execs in 12 years! My GP surgery has merged with another and then another and another in the last year. We can’t even work out where to go now as old practice building has been sold. I think you may have fared a little better in your part of the world, although the whole NHS is on its knees.

Thank you for this information. I have asked my GP for a DEXA scan and told of 2year waiting list. How do I find a private hospital that will provide this service? Thanks in advance for your help.

ChinaWuntoo
ChinaWuntoo in reply to Uisce58

Not sure about revealing where we live but I learned about a private clinic from a member here as we both are happy to let it be known that we have access to 'London' (that village up the road!). I also have not been shy about asking if anyone knows of a good rheumy in the London area. When it comes to exact locality I am a bit wary as I wouldn't want to say things about my rheumy if they got back.

Up-thread, see MoaningViolet posts.

Nerak12
Nerak12 in reply to Uisce58

Morning Uisce58. I’m surprised it’s as long as 2 years! Local CCG’s will not normally approve repeat scans in less than 2 years as changes happen slowly, but initial ones are normally quicker.

Re getting a private one: I went on Google and looked up local private hospitals. I Went on their web sites and gave them a ring to double check and asked if they do DEXA scans. 1 out of the 3 I tried does. It’s a BMI hospital. Spire didn’t (we have 2 locally). Then I rang GP practice and spoke to a medical secretary and told her that the local trust had cancelled my scan and I needed it because of upcoming Rheumatology appointment and that BMI hospital had said they could do it. As I said in my original post, it was all sorted in less than 24 hours. Hope this helps and good luck 😊

callmemadam
callmemadam in reply to Uisce58

Look up Sussex Medical Chambers in Worthing - I had mine done there last week and 2 scans with the report cost £75. I could have waited for a few months for the NHS to catch up but as this has been outstanding since 15 March - time was of the essence.

My last dexa, at my request, 2 months into taking pred showed osteopenia and some mild osteoporosis. I had been referred by my GP to a consultant for advice about alternatives since I said I believe I am not supposed to swallow AA. I have a hiatus hernia and gastric reflux with the beginnings of oesophageal damage. All I got was a two line letter with poor grammar stating that if I continued on the medication (AA I presume) I should be ok and I’d be offered another scan in 3 years! My GP had prescribed AA but I only took it once and she was aware of this when she made the referral. I was very upset and angry. Previously I’d been having scans every two years and now when I need it more I’m being offered less. The more I live with PMR the more I lose faith in the people who are the so called medical experts. It looks like the consultant didn’t even read the referral. Thank goodness for this forum! I put the whole issue to the back of my mind since I learnt from this forum what the alternatives might be and am not keen on them either. I take the right supplements and have bought a weighted vest.

Finally to my question, does anyone know if it is possible to have a private DEXA in N Ireland and can anyone advise whether it is worth having one more frequently than 2 yearly?

Nerak12
Nerak12 in reply to Rache

Hi Rache. I sympathise with you on many levels. Have you looked on Google to see if there are any private hospitals who do Dexa’s in NI? That’s how I got the tel numbers for the ones I rang. I think BUPA/Spire, Nuffield, HCA,BMI May have hospitals in NI. Xx

Nerak12
Nerak12 in reply to Rache

Hi Rache. Kingsbridge Private Hospital may be worth a try. Otherwise, your GP should be able to find out for you and make a referral if you ask. Good luck.

Thanks for reply, Nerak. Did research it at the time but will have another look. All the best with your journey too xx

Hi there. Thanks for posting. I have a telephone appointment tomorrow with the rheumatologist nurse and thought I'd ask her about a second dexa scan (the first one was Nov 18 and showed a T score of - 1.2 at right femur neck which is osteopoenia) so I want it done again to check its not getting worse (like many on here, I refused AA and was told by my rheumy I had made the right decision). I now expect to be told that won't be happening and I will probably have to wait ages. Unless like you I go privately. I could swear, but won't!

PMRpro
PMRproAmbassador in reply to Lonsdalelass

But it is barely osteopenia: -1.0 is normal! It isn't osteoporosis until -2.5

Lonsdalelass
Lonsdalelass in reply to PMRpro

Oh thanks for telling me that. It's reassured me a lot. The gp hadn't explained that, wish he had. Perhaps it won't matter so much then if I do have to wait another twelve months for a repeat scan.

Another option is to stand firm with Rheumatologist and ask to delay decision on bisphosphonates until DEXA scan is done. Simple. Things dont change that fast and few months should not make much difference ( and save £190.00 in a process).

Hello Nerak and everybody. I'm so sorry to hear about your struggles. I had my first ever Dexa scan on July 24th, about a month after being referred by my GP. The results were available less than a week later. Sounds like I was incredibly lucky even if the results were a surprise and not what I wanted to hear (-3.6)! I now have to decide on AA or not 😩. I live within Bedford Hospital NHS Trust which does not usually get a particularly good press!?

PMRpro
PMRproAmbassador in reply to Portobello

Ouch - that IS a bit low!! Is that all results or just one of them that low?

Portobello
Portobello in reply to PMRpro

I don't know. I was so shocked I didn't ask. In fact I requested the scan after a year on Pred and had to press the GP to give me that figure! I'm having a reprieve on decision making due to Gastro referral in September. Trouble is I don't know how to improve things without meds. I'm already active, have a good diet and lowish body weight.

PMRpro
PMRproAmbassador in reply to Portobello

Not often I'd say this ;) - the lowish body weight is part of the problem!! Us cuddlier types have built-in weighted jackets! It is a lot to make up and won;t happen quickly so for the moment I'd concentrate on damage avoidance - removing all the trip hazards like trailing cables and mats that might slip. Make sure the lighting on stairs and dark corners is good and so on:

everydayhealth.com/longevit...

I googled "reducing fall risk at home" and got a load of links, most of which will say much the same.

Wearing proper shoes with non-slip soles in the house rather than slippers can make a big difference to stability at any age. Of course - keep well away from step stools and ladders - leave them to someone else! And no ski holidays or jumping off Durdle Dor ...

I assume then you have a stomach problem - that should be AA off limits but there are a few options as infusions.

And this is HeronNS's story with no meds:

healthunlocked.com/pmrgcauk...

Portobello
Portobello in reply to PMRpro

Thanks so much for this advice. I'm pretty agile- Pilates, Tai Chi, Scottish dance till PMR hit but I will now be much more careful. Have never broken anything but always been skinny malincky. Maybe ignorance was bliss & I shouldn't have asked for a scan 🙃

PMRpro
PMRproAmbassador in reply to Portobello

I suspect being agile can be a downside - because we try to do things that aren't advisable!! It is oh so easy to slip, trip, topple. And a fractured vertebra or broken hip is a bit of a pain ...

Oumaof2
Oumaof2 in reply to Portobello

Hi Portobello... Does your surgery have an Online system? Such as SystmOnline, I'm sure there are other providers... All results, blood, scans, x-rays etc. are posted to your account and a txt message advising this... They are only accessible for ? 30 - 60 days... You can also order medication... It saves a lot of hassle and travelling back and forwards to surgery.... All the best... Lena 🌻

Portobello
Portobello in reply to Oumaof2

Yes thanks it does. But when I looked the tests bit was greyed out??? I will ring in the week & ask if a minion will read me the results in full 😊

Sue_n
Sue_n in reply to Portobello

Hi I read a book called your bones by lara pizzorno regarding osteoporosis after having 2 wedge fractures of the back after I had a double hip replacement. I then started taking the supplements she recommended. Calcium from seaweed Vit D, K2 and seven others. My recent dexa scan is plus 05 which I was very pleased with. Last year I had an infusion of bisophates which lasts a year which seemed to have helped my bone loss, and this year just waiting for a decision. In her book she explains exactly how bisophates work. It is worth a read to keep you informed. I am also exploring HRT for those over 70, but the jury is still out on that one. -3.5 is below fracture level which is -2.5. I wish you well with your decision on AA there are other alternatives which are better tolerated. If you are lucky enough to be offered an infusion it goes straight into the blood stream and I felt reached the bones much faster. I have been off steriods now for 2 years, which is also helping.

Portobello
Portobello in reply to Sue_n

Thank you Sue I will try to find the book. I've never had a fracture and that's one of the reasons I was so surprised at my low score. I will now start the ROS exercises as well as my daily walking and will enquire about infusions. AA is unlikely I think due to the steroid induced gastric problems I've developed. I tapered to 4.5mg Pred today so hope that will soon have less of an effect on my bones. Good luck.

PMRpro
PMRproAmbassador in reply to Portobello

It IS worth remembering that most people who have a fracture have normal bone density! And many with osteoporosis don't.

Portobello
Portobello in reply to PMRpro

How interesting is that! I need to do more reading 😊

Sue_n
Sue_n in reply to PMRpro

Thank you for letting me know this. It does make sense, although all i did was stand up. PMR has gone and off steroids so now stand a fighting chance,

Strange!... If your surgery is like mine, it's a marathon to get through🙄 🍀🍀

Sorry to hear about DEXA delays. Mine was booked in March and obviously cancelled. It has been rebooked for August 15th in Paddington by them. Good luck with your appointment

Hi again,

Reading your post and the replies etc has focused me on reading a bit more about DEXA scans and also LOADS of related bone health articles - I’ve gone down the usual rabbit hole 🙄, and found myself reading a lot of the transcripts of Dr Greger’s video tutorials (I find the videos a bit too time consuming and slightly annoying🤪.) For anyone who’s not heard of him he’s an American Dr who runs a charitable Not for profit information service - he does massive meta analysis research into other available research articles and seems to be generally acknowledged to be a ‘trustworthy’ source of information -

I have mentioned before that I am on a whole food mainly (not 100%) plant based diet to control my Primary Progressive MS, and it is slightly conflicting with the low carb advice whilst on Pred, so I’m always a bit cautious about the guidelines I’m following, and constantly reading about dietary info and effects🤪. I know pulses/beans etc are pretty high carb and also contain phytates, which are often believed to be bad for bone health, so this transcript below is reassuring for me and might interest people who are concerned about their bone health - and the available drugs and side effects of them ...

this is just one of hundreds of articles he’s done videos and transcripts of and I think I’ve been through a good proportion of them over the last 5 or 6 years 😳

Note to admins- if you don’t approve of links to this type of article will you please let me know? To the best of my knowledge this guy is an acknowledged ‘expert’, and reports to US Government etc🤔😊

nutritionfacts.org/video/ph...

If you have to eat carbs, they shouldn’t be more than 25% of your diet and should not be processed ones like white flour, white rice, white bread or sugar. I avoid anything with sugar in and only eat brown pasta, whole grain bread (Make my own), whole rice or wild, lentils, beans, whole grain couscous etc. But I do eat lots of fish, chicken and a little red meat - about 1 portion every 2 weeks to help with the iron and the carnivore in me 😀 I do eat loads of low fat yoghurt, a piece of cheese (about 1- 2 ounces and 1 pint of milk a day & almonds to get my calcium plus supplements. 3 eggs a week as well. - organic free range only! Virtually nothing processed - I’m not a saint!! If I didn’t have some carbs I’d fade away!! I’m 5’7 and fraction under 9 stone and that’s after 2.5 years on 7mgs plus of Pred. Oh and I have some wine at weekends - keeps me and my partner sane 😂

Thanks so much Nerak,

Our food choices are very akin In a lot of ways 😃 ... I never eat processed food or oils (apart from 20mls cold pressed extra virgin flaxseed oil Daily and small amounts of EVOO as a treat- it’s all about the omega 3s for the OMS diet and as little Saturated fat as possible ... And nothing fried at all🙄 Other fat is ok though, just not saturated, So coconut is out Too 😥) ... no white bread, rice, pasta etc - all only wholegrain - and I mostly make my own bread too as most shop bought has Processed oil in...

No meat, chicken or dairy - but I do have fish or seafood two or three times a week - plus occasionally egg whites, plenty Organic Tofu & Tempeh, Lots of beans, chickpeas, lentils etc ... I eat literally mountains of all kinds of veg - especially dark leafy greens daily - lots (&lots!) of cauliflower & broccoli - Mushrooms, onions,garlic, salad stuff, med veggies etc ... I maybe eat too many carrots (root veg is quite high carb isn’t it) as I Tend to snack on raw carrots and celery etc while prepping dinner most evenings, with home made hummus or Dal, mushroom and walnut pate etc as ‘dips’. I also use Organic soy milk and yoghurt - nuts, mostly Almonds, walnuts, cashews, assorted seeds, Mainly pumpkin, sunflower and pine nuts etc ... I have freshly ground flax seeds daily with organic jumbo oats, lots of (maybe a bit too much!?) assorted fruit - But no Added sugar In anything though - luckily I don’t have a sweet tooth anyway - Oh, And my wine and my gin is ‘dry’ 😁 - I’m so ‘Unfond’ (is that a word or did I just make it up🤪?) of sugar I even cut my tonic 1/2 & 1/2 with soda water😂.

I do have Very high levels of vitamin D - again for the OMS diet - and the side benefit to that is it (along with the vitamin K2) allegedly helps keep the calcium in my bones. My recent blood tests show calcium levels are ok (And my HbA1c was ok too - wheew!) ... I’ve been on this MS ‘diet’ for over 7 years now so hopefully everything is still ok - but being on the Pred I’d really like the Dexa test Asap to check - especially as my mother had osteoporosis and several breaks in later years. She was on Alendronic Acid weekly and daily Calfovit - and ate enormous amounts of cheese, full fat milk etc - But was still VERY light - Tiny in fact - which was maybe the majority her problem - 5 feet nothing and not much over 6 stones - I’m only 5’4” and just under 9 stone which Thankfully hasn’t changed upwards very much while I’ve been on the Pred (yet ... & it is just over 6 months now ... I do think to be honest that my appetite quantities/portions have gone up slightly since pred though🤔) ... and I’m proportionally a good bit heavier than you as I’m 3” shorter... must be those errant carbs😂!

Sorry, that was a bit of a novel wasn’t it 🤪 - but thanks again for all the Info ... I appreciate it ... I do love how helpful everyone is on this site 😊

Wow! I’m very very impressed with your diligence in your diet. You’re working very hard at looking after yourself and don’t deserve to have such a rotten combination of diseases. There is some evidence to show Alendronic Acid gets the calcium into the bones, but the bones still become more brittle over time Which is part of the reason NICE now recommend people don’t remain on it for too long. Seems like we’re doomed if we do and doomed if we don’t. My mother took her Alendronic Acid religiously and had a good diet, but broke both her collar bone and neck of femur in relatively low impact falls. She also lost a lot of height even though she was active. I can’t help feeling there’s more to all this than the scientists have yet to uncover! Had my DEXA today and the osteoporosis in - hip and lumbar spine has got marginally worse, so glad I paid for the scan and it’s going to be an interesting conversation with the Rheumatologist on Monday!!! 😱

It’s easy with practice😂 I’m so used to the diet now it’s 2nd nature and my cravings for salt and vinegar crisps and grilled cheese on toast have pretty much gone. The only meat that raises a regretful glance these days is a medium rare fillet steak or on the same theme, beef wellington 😥 ... apart from that I’m happy with my vegan stuff and my steamed or baked fish. It’s weird how if I’m eating out a lot -ha ha, pre Covid, or travelling, also

Pre Covid 🙄, I start craving things like spring greens, Savoy cabbage, and for some reason, lentil soup 🤪🤷‍♀️?

Anyway, I spoke to the referral centre today amd they think I’ll maybe get letter about when I might get an appointment in about 4 weeks but there’s a good chance it might be 4 months for the appointment. I might wait the 4 weeks to see what they say and if it’s more than a couple of months I’ll look at the private options around here. I had a quick look amd there’s one in Manchester, one in Bolton one in St Anne’s so I have got options ... I’m speaking to my GP tomorrow about Pred prescription so I’ll Check out her views on a private referral...

I’d love to find out how you get on with your Rheumy😃👍.

In the UK money provides priveledged Health and Education. The two worst failings of the post war Labour Government were not to introduce both a Health Service and Education system 'for all'

PMRpro
PMRproAmbassador in reply to VicSat

Funny - I thought they did. Could have sworn I was a product of both,

Nerak12
Nerak12 in reply to PMRpro

I’m so pleased you posted that PMRPro. I thought all mine and my parents education and work experience was all a figment of my imagination! So good to know I’m still in the real world! 🤦🏻‍♀️

I have had 2 DEXA scans at Wharfedale Hosp over the years. For some reason that state-of-the-art hospital has been closed for the duration even though it doesn't have an A&E dept and everything is by appointment only. Some x-rays and scans are still being done in the main hospitals and other clinics, When I was in A&E about a month ago I had a chest x-ray, and the x-ray unit, and the rest of A&E was very quiet. A few weeks ago I went for an eye clinic appointment in part of a GP practice building in the suburbs of Leeds and that was fine, I had lots of imaging tests, we were both masked up etc and all standard Covid precautions taken. I don't see why if I can go for monthly blood tests and steroid injections at another hospital, people can't have a DEXA scan in a very low-risk hospital - esp if they are still being done provided you pay n private hospitals! It takes minutes and people are in and out quickly, and provided stanards are followed they would be safe. Appointments can be done safely - the hairdressers and chiropodists are managing to get going again. I don't know how they justify not doing some of these tests.

You may also like...