Letter from Consultant Rheumi in latest PMRGCAUK Newsletter

[Mindful3]

I was delighted to read the letter from a consultant at the Mayoh Clinic which states that there is no difference in life expectancy, Diabetes, hypertension and fractures in patients with PMRGCA and the general population. Why then am I being told I’m prediabetic and that I need medication for osteoporosis? I’m sure it’s the steroids that have caused the problems, but I suppose the official response would be that these diseases are common anyway.

On a different topic

Thank you all very much for your kind comments about my aardvark.

[Hidden]

I presume/hope you being sarcastic/ironic about the rheumi' statements, but I haven't had a chance to read yet. I did see Dr Matteson was in there on a flick through. I will say there is no evidence that life expectancy is any less that non PMR. There is evidence to suggest that long term steroids under 5mg are not as bad as once thought and under 10 likewise. In fact only cataracts are seen as a potential issue. But, as I have been reminded, wearing reactolite type lenses to protect your eyes is highly recommended for cataract and other age related degeneration.

It is well understood that some people may get steroid induced diabetes and that bone density can be effected if you don't make changes in diet and life style. Steroids do cause blood pressure to rise in some. These are usually on the patient information leaflet that is usually in the box so even the manufacturers are "happy" to disclose these potential side effects.

Because we know this that's why we consistently recommend a low carb diet, argue for a dexa scan, take vit D3 and calcium and keep an eye on your hba1c and BP. But as I say I haven't read it yet.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Not a new, new study....2017.... so has been about a little while.

But worth reinforcing findings for some doctors who have a hate/hate relationship with Pred.

[cataline in reply to Hidden]

I keep reading about low carb diet, and I'm not sure what that is about in relation to PMR/GCA. I'm one of those skinny birds who immediatly start to lose weight if I don't have a huge bowl of porridge for breakfast, at least 2 slices of bread at lunch, and a mountain of potatoes, brown rice or wholemeal pasta with dinner. I dont consume any sugary products however (fresh fruit only), and prepare foods myself, no ready meals or junk foods. I also have low blood pressure.

[PMRpro Ambassador in reply to cataline]

Then if you can still do that on pred and not gain weight - be grateful! Though I hope your GP checks your Hba1c a couple of times a year to be sure you aren't developing steroid-induced diabetes.

[cataline in reply to PMRpro]

Grateful I am, I love my food. I'm sure he is checking for diabetes, he's obssesive about all the side effects of steroids. Is there something about certain foods and inflammation, I seem to remember my aunt giving up dairy and wheat but she had osteo?

[PMRpro Ambassador in reply to cataline]

Depends on the person I think. I have an allergy to wheat starch - the highly commercialised stuff, spelt and kamut are OK so it is quite easy for me to resist processed carbs - they have to be very good to be worth itching for!!! But when I do eat much more carbs/sugar than usual (doesn't take much) then I do feel different. Can't say I flare as such - but I feel achier ...

[PMRpro Ambassador]

I have no signs of even pre-diabetes or bone denity loss - not everyone has the problem anyway. But it has been instilled in generations of doctors that pred is evil stuff and their patients shouldn't be allowed to have it even if they need it. That is why Matteson and co did this study and we refer to it a lot on the forum and it was presented at the ACR meeting a couple of years ago - there was considerable medical media comment at the time.

I have always said: they say that 40% of patients on steroids develop osteoporosis. But the figure quoted for the general US population is 50%. Which I understand to me that more non-steroid patients have osteoporosis!!!

[jinasc in reply to PMRpro]

You are correct.

My personal experience:

5 years with GCA and high start dose, then 2 flares within 18 months both times back up to 40mg.

Dexa scan after first six months - bone density 97%, checked every two years...............still 97% at the last scan.

6 years later - without pred - osteoarthritis in knees and some fingers.

[Cally55 in reply to jinasc]

My experience is the opposite, after two years on highish dose and taking bone protection meds and whilst lobbying for a DEXA scan had 2 vertebral fractures, then I got a scan and a diagnosis. Presumably my young and inexperienced consultant like you felt osteoporosis was unlikely, what the more experienced ones realize is that this disease can be way more devastating than the GCA PMR, in the absence of DEXA availability they have no choice but to prescribe bone meds?

[PMRpro Ambassador in reply to Cally55]

But the bone meds don't always work - you said you were on bone meds. Another lady on the forum with the same story as jinasc and me despite not even taking calcium (her GP thought she was on stuff from the rheumy, the rheumy thought the GP was taking care of it) told us about her 80 year old aunt who had spinal fractures due to osteoporosis - despite 8 years of AA. Even the consultant said the AA had been a waste of time. Though I do wonder if it was too much. But after surgery and a couple of years of Prolia she was out playing tennis again

[Cally55 in reply to PMRpro]

Hoping for the best. Now I am due for my next zoledronate infusion and of course have heard nothing from hospital. GP was a bit vague about what happens next, I think it can be left for a month or two but then the NHS is going to have a massive backlog and in fairness I think cancer patients should take priority for infusions.

[PMRpro Ambassador in reply to Cally55]

Whereas my husband needs a blood test - and my GP here in Italy knew exactly what is required: all done by appointment. Which department is dealing with yours? Ring them and ask them ...

[tangocharlie in reply to PMRpro]

Good point PMR Pro. I'm sure I've read somewhere that people on Pred may have less risk of fractures because the Pred makes us more mobile and less prone to falls.

[Rugger]

After 8 months on pred, I had a DEXA scan which showed I had osteoporosis, so I'm on a bisphosphonate drug. However, I'll never know how long I had osteoporosis - maybe even before my PMR diagnosis - who knows?

I'm careful with my diet and my HbA1c has stayed within the normal range for 4 years.

What we can all do is take care of ourselves in the best way we can, hopefully to avoid as many of the possible side-effects.

[Hidden in reply to Rugger]

Sorry to hear that rugger. Had you had dexas all along?

[Rugger in reply to Hidden]

The DEXA scan at 8 months was my first, due to a less than diligent GP dealing with me when I was diagnosed with PMR. That's history, as I am now looked after by "Dr Wonderful", who picked up on his colleague's lack of care and arranged the scan and other things - better late than never!

I had a second DEXA scan after 2 years and the figures were the same - not better or worse. I will be due another in 2021.

[Hidden in reply to Rugger]

I will bear that in mind. First two ok for me. I was told I could drop calcium supplements but haven't and fortunately Dr hasn't knocked it off my list. I think it's 3 yes to my next one. Will ensure K2 is rigorously kept up with too. Good luck 🌻👍

[Rugger in reply to Hidden]

I'm on calcium & vitamin D, but only since the change in GP - the first one didn't prescribe them. He also gave me a PPI, which may have contributed to the osteoporosis - again, I'll never know. I stopped that, in favour of gastro-resistant pred tablets.

I'm also taking K2 since reading about it here. I don't know where I'd be without this forum!

Thank you for the flower and thumbs up - I don't know how to do that!!

[Hidden in reply to Rugger]

If you have a phone or tablet it's easy as there is a smiley face on you keyboard thing. Laptops etc...not so sure!!☺️

[Rugger in reply to Hidden]

That explains it. I haven't entered the 21st century yet - I only have a desktop PC and my beloved old Nokia phone! The folk in the Ilkley support group know me well!

I can do smiley faces using characters on my keypad.

[PMRpro Ambassador in reply to Rugger]

Open another tab and open this:

getemoji.com/

Click and drag to mark, control C to copy, control V to paste ...

👍🏻 💐

[Rugger in reply to PMRpro]

Thank you - you are helpful, as ever! 💻 🌞

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

When typing just right click mouse - and first option is Emoji😊-or press windows icon and full stop😊.

But I do like PMRpro's link!

[PMRpro Ambassador in reply to DorsetLady]

Type and right click eh 😁

Thank you! OH keeps telling me to right click to do things - half the time it doesn't work!!!! 😈

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well if you can’t blame the man, you’ll have to blame the mouse! ........or maybe (whisper it quietly) operator error 🤣😂🤣.

Good job we’re all in lockdown, you’ll have forgotten that by the time we get out!

[PMRpro Ambassador in reply to DorsetLady]

No, it was for sciency-techy stuff but also things for which Word has keystroke shortcuts which I already knew!

[Rugger in reply to DorsetLady]

Thank you. 👍 I'm using PMRpro's link, as our operating system is Linux, not Windows! (OH is a software engineer.....)

🌷

[tangocharlie]

I also had a quick flick through and was struck by the contrast between that article and Dr Mackie's column on cumulative dose of steroid and why doctors worry about it. The study about long-term effects being no worse for people on steroids vs those who haven't has been around for a while and was widely quoted in many scientific journals and in many posts on here. Yet Dr Mackie seems to take the opposite tack saying we do need to worry. This also got me a bit angry I must say because even if the study is wrong and l-t steroids do make us worse off, what choice do we have? If our bodies say we need Pred and it's the only option available to us, apart from DMARDS such as MTX which haven't ever been shown to help PMR, then we have to take them, and just minimise the risks. It seems bonkers to say we need to worry about cumalative dose when there are no other options routinely offered?

Depo-medrone injections have a much lower cumulative dose and possibly more rapid remission of PMR, but as far as I know, no studies have been carried out on their effectiveness since their use was put forward in 2009, and patients are very seldom given the option unless for some reason they can't take oral Pred.

[PMRpro Ambassador in reply to tangocharlie]

I'd bet un- or inadequately managed PMR leads to more problems than long term pred - in terms of weight gain, falls and injury especially fractures, mental health problems. I had a lot of so-called pred effects during the 5 years pre-pred. Can't have been pred can it?

[tangocharlie in reply to PMRpro]

I don't know how you coped, the year leading up to diagnosis was bad enough for me, I was crippled and fed up of not knowing what was wrong with me and being dismissed by doctors. At one point I was told I was depressed and one of the GPs tried to put me on anti-depressants, even though I said I was just fed up because I felt so ill. I remember he did this questionnaire which indicated I was borderline depressed. I subsequently found out the questionnaire used to diagnose depression was designed by the drug company that makes the anti-depressants! No conflict of interest or bias there, I'm sure.

[PMRpro Ambassador in reply to tangocharlie]

Oh no, none at all! I preempted that and pointed out anyone in chronic pain is likely to be depressed! But my bloods were fine - there couldn't be anything wrong. I mean - what a thought process!!!

There were a lot of lifestyle changes - and I didn't have to go out to work, just get from my bed to the computer desk. It wasn't until we moved briefly from the big house with multiple loos on all levels to one with one upstairs loo and at the same time I was stopped from driving (wrongly) that I realised how bad it was. I came here - no stairs! - and spent a lot of time online and worked out what it might be. I can still remember taking the first dose of pred - and the difference in under 6 hours!

[tangocharlie in reply to PMRpro]

I guess I was under a lot of stress from an eye op that had gone wrong but I'm very resilient and don't get stressed or depressed, luckily. I'd had a frozen shoulder for 18 months which seemed to have spread to the other shoulder and neck but I was just told that happens! I went to 2 different physiotherapists who commented on how stiff my neck was and there was a knot of muscle between shoulder blades. I had steroid injections in my shoulder but they did nothing. I was told the reason my legs and hips hurt was because I'd got unfit even though I said I could hardly move to do any exercise. I really think the Doctors were getting fed up of me and assuming it was psychosomatic. inflammatory markers were raised but I was told 'they could mean anything'. Eventually one of the GPs twigged but it took over a year. As Steve Jobs said 'you can only join the dots looking back'.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Yes but it would help if they actually looked for the dot’s - mine certainly didn't in 18months - symptoms very similar to yours - shoulder wise! Not even sight issues rang a bell.

[tangocharlie in reply to DorsetLady]

I'm sure artificial intelligence, putting symptoms into a computer, would do a better job than relying on one individual doctor's knowledge. You only have to Google 'stiff shoulders and hips' and it'll come up with PMR (to prove it I just did and look what comes up: google.com/search?client=fi.... Sadly, lack of knowledge about GCA is more dangerous as it causes blindness for people like you, and just shouldn't happen.

[PMRpro Ambassador in reply to tangocharlie]

Other than the frozen shoulders it sounds very like me. The knots were responsive to Bowen and osteopathy or it would have been far worse. But frozen shoulder is a common start to PMR. Shame your steroid shots didn't help - that is often a reason for PMR to be diagnosed, the pred helps briefly and then it is all back. Light bulb moment!

[tangocharlie]

I've had 2 DEXA scans in 8 years, both fine and no change, and an x-ray in January done because I was complaining of hip and groin pain showed no problem with bones. My GP used to prescribe Adcal for the first few years on Pred but doesn't now, I don't know if the change was due to financial reasons in NHS or change of policy for other reasons. Has the NHS now switched to prescribing alendronic acid? Is anybody here on Adcal?

[tangocharlie]

Forgot to say Hi Mindful3 - hope you're keeping smiling, was good to see you at the meet-up last year.

[Mindful3 in reply to tangocharlie]

Hoping to Zoom with you in May?

[tangocharlie in reply to Mindful3]

Great, see you then