Having become totally fed up with all the waiting around for tests, answers and follow ups - which didn't give the same advice as I read here - I have booked a private apptm with a specialist Rheumy who I'm assured is more than well up on PMR.
I am now wondering how best to use that 30mins I'll have!!! I have copied all my latest blood results, but I don't want to come away wishing I'd asked about things I didn't think of at the time. I just wondered whether anyone here might have some tips.
Many thanks
Written by
CJDLSR
To view profiles and participate in discussions please or .
You don’t have much time to play with so you need to know what you want to achieve. Just because they are private doesn’t mean they will be good thinkers or indeed at the cutting edge of PMR as many here have found. Therefore, I wouldn’t go in with reams of info and expecting them to divine from that what you want.
Can you say here what your top three issues are that they need to address?
Good question Snazzy - that's focused me to start with!!!
1) Medication.
2) Tapering (I'm very happy with the advice I've had from this forum on tapering, but I wanted something that I can show my GP that will carry the authority needed for her to have to agree!!!)
3) Self help (diet / lifestyle / exercise etc) - again, I've had loads of good advice from here, but would ask the question for any further ideas.
The average doctor really does know very little about the role of diet in disease. Even Prof Sarah Mackie was surprised about the effect of carbs/less carbs in various aspects of pred and PMR.
You have PMR? In the UK? Then as far as medication is concerned it is pred. No real alternative. Or are you interested in so-called steroid-sparers? I think you will have to wait for an NHS appointment if you did want to try them, DMARDs can only be initiated by a consultant and wouldn't be remimbursed on a private script.
Thanks for your reply. Yes, I'm in the UK and have PMR. I have understood that there is no alternative to Pred to treat PMR, which I have accepted, and I'm expecting to follow one of the tapering protocols found through this forum, which sound a very good idea.
I was thinking more of all the other meds I'm on and how they interact (or not!!!) I have taken myself off the Alendronic Acid (the more I read about it, the more I don't want it!!) and I'd like an alternative to Omeprozole.
Maybe I'm being a bit unrealistic to think that a Rheumy would have the answers to those question?
They were rhetorical questions really! And my questions now are to make you think WHY you want something.
Have you had a dexascan? Not that they tell the whole story as both tangocharlie and I can attest - we both had good dexascan results but still developed spinal compression fractures, I hadn't taken AA - I have now had a zolendronic acid infusion, the first of 3. It is a great concern on the part of rheumies that so many patients reject the AA - I do understand why patients don't want it and why doctors do, but they tend not to see the patient's view. What I can tell you is that a spinal fracture can be a very painful and potentially lifestyle limiting experience!
I fully understand the desire for an alternative to omeprazole but that is probably something to discuss with your GP. WHY do you want an alternative?
Theoretically they should know - whether they do and whether they are willing to discuss it with a patient is another matter, very much depends on the rheumy. And time available.
We can discuss the interactions and reasons for the medications handed out here - and we have the time.
Perhaps the main reason for a rheumy consultation is to confirm the diagnosis in the first place - because everything hangs on that really. Discussion of the finer points only really is possible once you have the relevant experiences on which to base any objections or adjustments. Is ongoing care in the private sector an option? The costs do mount up very quickly.
Is ongoing care in the private sector an option? The costs do mount up very quickly.
Yes, I am aware of that and wary of it!! In some ways I would like more tests but I think they may be very expensive if I have those privately. I am sure there is some RA creeping in as well. It's in the family and I've had high markers for RA for some time, which is why I've been under review with the local rheumy dept (who have never responded to my phone calls to tell them I now have PMR!). I am getting what I'm sure are arthritic pains in my hands and wrists, not constant but pretty strong when they do appear.
I had a DEXA scan in May this year (before the PMR diagnosis) but by the time I was able to discuss the results with my GP, I'd had the PMR diagnosis and another Dr had told me I had osteoporosis and dished out the AA . I took that for a month, and then found my test results on line and it seemed to be saying my risk of fractures was less the 10%, while the risks to my oepophagus of taking AA (I also have GORD) seemed to be much greater, so I just stopped. I guess at some stage I'll be able to discuss it with my GP again - she doesn't seem to be around very often!!
If you can advise on the mix of meds I'm on and how they interact etc, I'm happy to give you more info.
Fair enough - if you already have GORD then AA is contraindicated. You might manage risendronate which is less hard on the stomach but preferable would be zolendronic acid which is an annual infusion - no gastric risks.
Do you have the t-scores for your dexascan?
If there is a chance of RA - why is it assumed what you have is PMR? Several forms of inflammatory arthritis can present identically to PMR, it is called a polymyalgic presentation. There is no way of distinguishing between "just" PMR and LORA (late onset RA) until joint erosion is seen on imaging.
I think your best hope for your consultation is to discuss what I've outlined, The rheumy probably can't come to much more of a conclusion without imaging really - and privately that will be expensive. Having got the thoughts clarified you face the problem of transferring that to an NHS rheumy because the GP can't really do a lot without that if actually it IS an inflammatory arthritis, they cannot initiate the medication beyond pred. And some rheumies can be very precious about their diagnoses - or taking over one from someone else.
That is very interesting. I had read somewhere that Omeprozole shouldn't be used with someone with GORD, and I do have swallow issues and occasionally something that I have read on here as called ?oesophagul spasms (well, that's what it feels like - thought it was a heart attack first time it happened!)
DEXA scan results:
Ten year osteoporotic fracture probability score using FRAX (Fracture Risk Assessment Tool) with bone mineral density: 20 %
Ten year hip fracture probability score using FRAX (Fracture Risk Assessment Tool) with bone mineral density: 9.2 %
It was the risk of hip fracture that I quoted.
Lumbar spine dual energy X-ray photon absorptiometry scan T score: May '24 -3.5%
Lumbar spine dual energy X-ray photon absorptiometry scan T score: May 24 -3.6
You could perhaps interpret that lot for me!!!
To be honest, I have wondered if it is PMR. I went to the dr with body aches for no apparent reason (hadn't been gardening or walking up the fells etc). He suspected PMR and asked me to try steroids for a week, explaining that if they stop the aches, it pretty much confirms PMR. They stopped the aches in a couple of days. A month later another dr didn't agree with that diagnosis and took me off the steroids. She said my inflamation markers weren't high enough. After what I assumed had been a flare (extremely painful and unable to move easily without shooting pains) she took bloods again, inflamation markers raised much more this time and she put me back on 15mg preds. The acute pain eased but the aches remained significant so I rang the surgery again and spoke to yet another dr who increase the pred to 20mg which I am still on. I should be starting to reduce as my latest blood tests were OK, but the aches are still around. Not really debilitating but telling me a should be careful what I'm doing etc, so as I'm seeing Prof Hughes a week tomorrow I thought I would wait for his suggestions / advice.
Some more scans is what I would like in order to see exactly what is going on ref other forms of arthritis / rheumatism.
Can one choose to go to a health authority (rheumy dept) in a hospital in another county?? I believe we can opt to have surgery anywhere now, but still on the NHS?
I really appreciate the time you are giving me on this. Thank you so much.
Is one of those t-scores for your hip? Both say lumbar spine. Those scores really are pretty low. -1 would be normal. -2.5 is where osteoporosis starts and you are well below that. You could do with calling the ROS helpline and discussing it with their expert nurses because I suspect you would qualify for something better than AA.
You used to have the choice of where to go for the first referral but with the NHS in the mess it is in, many hospitals have stopped accepting referrals from outside their catchment area. If you are seeing Rod Hughes you will get a good discussion I think and he used to transfer people to his NHS list. I don't know if he still does, if he is allowed to. You will find that out next week.
Your GPs have got a mix of not entirely correct views. Response to pred DOESN'T confirm a PMR diagnosis, just makes it more likely, up to 1 in 5 patients don't have raised markers and can lag behind the symptoms. And of course you can have both PMR and something else.
That is very helpful regarding the DEXA results. I'm sorry but I can't really answer your question about the T scores. I didn't understand them myself, so I guess we don't know which was which? But if they're both on the low side that's reassuring.
The person who did the scan said I was "on the cusp" of being osteoporotic. It seems that drs just work to formulas these days. Age / gluten intolerant / on steroids = prescribe AA!! Like their formula for taking and reducing preds. It all seems textbook stuff and not related to real patients at all!
This is the email I received from my (prefered) GP after I'd had the bone scan:
I tried to ring today but you were not answering, I hope an email is Ok.
I am emailing about your recent bone density scan. It does confirm thinning of the bones known as osteoporosis. However the degree of the bone thinning is not severe. We use a risk calculator looking at your age and risk factors to determine if you need to start treatment. Your risk lies just below the treatment threshold. However you do have the choice to start bone density medication if you prefer, especially as you have risk factors like Rheumatoid factor + and gluten intolerance.
If you would like to discuss this further I suggest booking a telephone or face to face appointment with me.
So, in fairness, she was acknowledging that my risk was low. It was the end of August before I could get an apptm, by which time all the PMR stuff had happened and I'd already been put on AA. So we didn't really talk about that - it was later I started researching meds and became uneasy about it.
Can anyone ever get a really difinitive diagnosis for PMR? It does seem to be very difficult to be sure!
A PET-CT is one of the best confirmations if it shows inflammation in specific places in hips, shoulders and around other joints.
I asked because I wondered if you had mistyped - you have two different figures but both say lumbar spine. And given what the doctor has said - you have typed -3.5. If they were -2.5 then that is borderline osteoporosis but well below the threshold for treatment which is usually -1,6 or so. Something doesn't fit somewhere.
I copied and pasted everything, so there can't be any errors. I didn't understnad it either but have just found these too:
Bone Density Scan using FRAX (29.05.24) 9.2%
Lumbar spine dual energy X-ray photon absorptiometry scan T score: -3.5
Femoral neck dual energy X-ray photon absorptiometry scan T score: -3.6
Does that help? It doesn't change the figures though. I'm afraid I've given up trying to understand the GPs (sadly)
My latest blood tests showed my blood sugar score has gone from 41 at the end of June to 59 on 21st Oct. I've an apptm with the nurse tomorrow to have more blood tests taken, and see the diabetic (I think) nurse the following week. Don't know if this impacts on anything else we've been talking about. I know it's due to the steroids but I don't know what they are likely to want to do about it. I certainly don't want to introduce yet more meds. Two friends who are nurses have told me recently (and quite independently) that I am not the size and shape to be at risk of diabetes, and that changing my eating habits won't make any difference because it's the preds that have caused the spike, not the sugar element in my diet. I am doing a low carb diet now though, as that seems to make sense to me.
Yes - makes sense now. But I still don't see how your GP gets low risk. -3,5 is well into the osteoporosis range. They may have got THEIR numbers mixed up.
"Two friends who are nurses have told me recently (and quite independently) that I am not the size and shape to be at risk of diabetes, and that changing my eating habits won't make any difference because it's the preds that have caused the spike, not the sugar element in my diet"
They are right and they are wrong. SIze and shape is nothing to do with it - and yes it IS the pred that has done it. However, raised BS is a risk whatever caused it - like a drain overflowing is overflowing whether it was due to heavy rain or a burst pipe. It is still a flood. Our experience is that adjusting your diet to low, or sometimes very low, carb and in some cases time restricted eating CAN lead to lower Hba1c levels. You can't influence the pred component but you can control the dietary carbs that add to those pred-induced spikes.
A few people have invested in continuous glucose monitors or been very brave with finger prick testing and have established that for them at least there is a window round about 3 to 6 hours after taking their pred when the spikes are worst. Some avoid eating in that period so there is nothing adding to the spikes. Some find eating and immediately going for a walk modifies the spikes. Koalajane reversed Type 2 diabetes while on pred by careful diet and timing of eating. Her Hba1c fell so much her metformin was stopped. Others have reversed the rising trend of their Hba1c ,
The other advantage of low carb eating is that it can significantly reduce the weight gain so often experienced with pred.
I've read about the low carb eating, and the timing of it - I found that really interesting. At the moment I have muesli or porridge for brksft with yoghurt and fruit - wondering whether I need to adjust that. I take my preds after brkfst and then avoid carbs until supper time (usually 7ish) when I may or may not eat a little or none at all, depending what the meal is or how hungry I am! I haven't been putting on weight as yet, in fact I've lost a couple of pounds, but I do think my face is a bit puffier!
Regarding the DEXA scan and figures, I'm wondering whether I could ask the surgery to email me the actual report (which I have never seen). That may clarify a few things. I don't know how useful it would be for Prof Hughes to have that info.
I also wonder how reliable those figures are as someone is inputting them so there's plenty of room for human error. I have a feeling mine have been put in as a batch because when I looked a while ago there was nothing there at all. Now they g back years!
I think you need the dexa for Rod to see. And yes - sounds as if they are in the process of digitising your results and it definitely needs checking. It was drummed in to me when I started working how important accuracy was in transferring results - it seems to be an optional extra these days!
Your breakfast is pretty carby - and one of the things Tim Spector found with his work was that oats aren't always the wonderfully healthy meal they have been portrayed as - they sent his BS level into orbit! Fruit, although healthy, is very sugary, and carbs are carbs!
Yes I have wondered about fruit. I've looked at a few low carb diets, including the Keto diet, and I know a few people who follow it, but I just can't agree with it. I maybe need to rethink my brkfst though.
I also wonder how careful I should be about sugar. I don't add sugar to anything, nor do we have desserts, but if I think more objectively about my diet there is probably more hidden sugar in it than I'd realised.
This PMR (if indeed, it is) is taking me down a lot of different routes. It's all very interesting but it's taking a lot of head space!!
It's been a fascinating conversation. Thanks again for sharing your knowledge so freely
There are some ideas and recipes but the pictures make it easy to get a feel for what is better and less good. Keeping an honest diary is a great help - weight the portions and work out how much carbohydrate. Most people get a real surprise at what is hiding where!
I was about to say "lower is not better". I would ask about the Rheumy about Zoledronic Infusion as AA is not a good choice for CJDLSR. I would also add (with all these ruddy compression fractures) that Osteoporosis is nothing to play with and unlike PMR, doesn't go into possible remission. Sorry to hear you have them as well Pro. I wasn't aware.
What made them say it was that out of interest? They tried that on me once it was boll*cks, it was PMR all along and I knew it. I didn't have any of the symptoms they just thought it was more likely given my young age
Your turn of phrase has made me laugh TC! Three reasons were given;- mostly my pain wasn't bilateral, then my IGAs were high, where with PMR it's IGGs (I might have got those the wrong way round), lastly he thinks my mother had it from what I described to him (from many years ago so probably not that accurate!). I'm no expert of course, but I think he was probably right that it isn't PMR. The really bad pain, which was in my hip, disappeared of its own accord before I even started steroids. All I get these days if I get too low is a permanent headache and fatigue. I have quite a bit of neck and shoulder and buttock pain, which he said was probably originally the Spondyloarthropathy, but probably not now (had a recent cervical spine scan and no inflammation there).
I can tell you why Alendronic is so bad there is multiple research on it about this particular drug about Macular advancing and it has happened to me. Within 3 months of taking it my eye consultant was not aware of me taking it they assume it was my Hydroxychoroquine that caused and they stopped my Hydroxychoroquine. Until I got home and did my own research and looked back as to why all of a suddenly there was an advanced macular changes in my eyes which shocked them. So , I did look into it and found that Alendronic has high incidents of causing macular changes with people who already have macular. And for those who don't have macular they can cause macular incidents .
I looked up on not just one report there were several reports/research.
I did take the liberty to stop my Alendronic acid . My calcium levels maintain. Why I was on Alendronic?I did have a bone density scan -showed low levels of density which is why they started me on Alendronic and high calcium . But after 3 months, and this incident cropped up I stopped it -no more Alendronic. Just Calcium. Calcium is now normal levels so is my Vit D. I am still continuing my calcium and Vit D. I take them with alternative absorbing solutions. A more natural solution 😆 .. If you research you will find that calcium and certain minerals absorb differently in our body's using natural solution either with natural juices or with coconut or other forms of fatty soluble.
Having done my own quick search - there are mixed and contradictory results from small and in some cases observational studies which had considerable limitations since they didn't look at other confounders such as smoking for example - also heavily linked to osteoporosis. However - none of us here are evangelical about bisphosphonates and are very much of the opinion that they should only be used in patients at high risk of osteoporosis. We are also very aware that dexascans don't tell the whole truth - a few of us have developed spinal compression fractures despite good dexa results. I now have started a bisphosphonate course - I don't know whether I will continue as it triggered some arrythmia with the first infusion - just after having an ablation to cure atrial fibrillation!!
I don't have osteoporosis as what they thought I did before .my spine was classified as degenerative and spondylolisthesis. As to whether they were osteoporosis related I don't know? That I think I need to ask my spinal consultant on my next appointment when I see him in Nov. There was no mention of osteoporosis of my hip either from my hip consultant when we saw hip. So only ,when I go into surgery it will be interesting 🤔 when he finds out the state of my hips as I have been excruciating pain recently . Apart from several tears in the cartilage hip joint and groin.
So it is interesting that we have problems with our spine. ..
Also I have never smoked or drink in my life so it is interesting to say that they should look at patients who smoked ..why would it matter for someone who smoked ? I have never smoked and my lungs is a right state!!
But that is the point to some extent. These things do happen to people with no additional risk factors - but smoking IS a risk factor for osteoporosis and a lot of other things. It may increase the risk even more.
I think, and this is only my own opinion, but as we are deemed to be at hgher risk because we are on steroids that we should be offered a range of options, not just AA becasue it is cheap adn easy. But most people don't question it and don't know there are other options
Well I'm going to be asking for a review of all my meds, and I shall be pushing for alternatives with less nasty side effects. At the end of the day, surely it will SAVE the NHS money from having to treat the awful outcomes of prescribing the cheap and cheerful!!
I’m afraid expecting a GP to Have To Agree ….is a pipe dream.
Better to show her the sdvice you have been given & ask her opinion, but don’t have high expectations…most GPs have very little knowledge of rheumatic diseases…& in fact cannot prescribe a lot of the drugs used. But another medical opinion is always useful.
I can understand your disillusionment, and did expect that sort of response from my GP, but she is actually being very supportive and "is pleased that I am seeking a specialist opinion". So I am hopeful that I'll be able to have a decent conversation with her about ongoing treatment after my consultation.
What our local Rheumy dept will make of it, I'm not so sure. They don't have a good reputation and the waiting times are ridiculous. I see someone different (all locums) every time I go (usually at around 18mths - 2yrs+ intervals) and they haven't responded to my messages about the PMR diagnosis. I know I could wait for years for an apptm, which is why I'm seeking a private consultation. I don't feel, at my age, that I have the time to hang around waiting. I just want to get on with life, doing the best I can to make myself as well as I can be!
My brother passed the DSDNS taper to his Private Rheumy who approved it! My private Rheumy demanded much too fast tapering and caused me some grief. Flares really aren't fun so I gave up on them and now listen to the forum. Now down to 2.5
That's really interesting Pippah45. I'm seeing someone highly recommended through the forum, so I'm pinning a lot of hopes on this consultation! Everything crossed here!! 🤞🤞🤞
Doesn't hurt to be reminded to be realistic though, and that things don't always work out as hoped!!!
Well done on your tapering. I feel very confident that the slow and spaced way is the best and will expect to follow that. I have also had a flare, thanks to a Dr taking me from15mg pred to 0 over 2 weeks!!!!!! 😳 She said as I'd only been on the pred for a month, it would be fine!!!! It wasn't and I really don't want to repeat that experience!!!
Thanks to this forum I am much better informed now!!
A speedy response to pred - AND a return of symptoms on a similar timescale is very solid evidence. She saw both. And she MAY have stopped the pred for that reason.
Mmmm. Hadn't looked at it like that. I might have been more understanding if she had explained that to me in the first place! I feel I have lost 3 months as it's taken that long for everything to settle down, and the delays in getting responses from people hasn't helped.
Anyway - I'm feeling more hopeful now, the aches are definitely easing and I feel brighter in myself. Seeing Prof Hughes on Monday, so we'll see what comes of that.
It is a risk that they don't seem aware of but we see it all the time. Let it get the upper hand after starting/stopping pred and it seems to stir up a right can of worms.
That's what happened to me in 2017. Came off steroids, the untreated PMR reared up like a fire-breathing dragon and 7 years on I'm in a worse mess than when I started
Crumbs - don't tell me that - just when I'm starting to feel a bit more positive!!!
"like a fire-eating dragon" very well describes my symptoms at the time too! Trouble is, we don't know how we'd be if we hadn't had, what we see, as those major set backs (at someone else's doing). I guess it's human nature to want to blame someone else, but it isn't always someone else's fault, or their decisions may not actually have influenced the final outcome.
I agree they weren't to know, but I hope they are learning about the real world of PMR. They were adamant I didn't have PMR, until a PET-CT scan that I pushed for showed that I had
Everyone on this forum must be so frustrated that the medics don't take any notice of the expertise and first hand experience found here. When I eventually see my GP again, I will point her in this direction! I feel I'm becoming a PMR geek - but I still have much to learn!
Ha ha I like that, PMR Geek I definitely fit that label though not a label I ever aspired to be or thought I'd end up as. I'd much rather be off enjoying my retirement and PMR-free but it was not to be. I like to think I use my power for good though. The medics do take notice, especially of PMRPro as she has the ear of top rheumatologists in the world who hail her, to quote, 'a Legend'. There are thousands of GPs though so the education process is going to be a bit slower, do try and pass the word on to yours, every bit helps
Oh - tell me about it. I want exactly that - a holistic approach. Might tell my GP that as well!! I am suddenly becoming much bolder - amazing what a threat to ones own health and well-being can do!! I've noticed several folk on here saying that they have been empowered by having to become their own advocates. What's surprising me is that I'm not finding it that difficult. Motivation is a powerful thing!!
You've answered you own question really in your response to Snazzy, so I'd just keep it simple and write your questions in Plain English, which as I understand are eg
Have I got PMR?
What's the best way to treat it? I've read about tapering dosing, what do you recommend as I'd like to be able to work flexibly with my GP to be on the right dose and respond to flares if necessary?
Can I have a letter to take to my GP?
What else do I need to be concerned about and what are my alternatives eg bone and stomach protection. (Although tbh you'll probably get better answers to those questions on here!)
My understanding is she wants to make sure the GP knows what s/he is doing when it comes to treating the PMR. In fact that's the question to ask isn't it, in very Plain English
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Today is the tomorrow I hoped for yesterday....
Newbie needs some advice
Now I know what fatigue is !
Praise from (and for!) my rheumatologist
Using flexiseq - tips please
