Osteoporosis/PMR treatment

[Birdyloo]

Good morning all, I wondered if you can give me some guidance please. I have PMR and have been taking Pred for 10 weeks now, started on 20mg, tapered to 17.5 after 4 weeks which increased pain and stiffness and reduced agin to 15mg 5 weeks later but this again increased pain and stiffness and I have gone back to 20mg. Dexa scan 2 weeks ago showed osteoporosis in my spine and osteopenia in hips, I don’t have the T scores yet, they take 6-8 weeks to come through apparently. I am 53 years old and the chap who did my scan said he wouldn’t advise taking alendronic acid as I am too young (don’t hear that often anymore!) but my doc is keen for me to take it. I am worried about the side effects especially as regards dental treatment as I am likely to need implants as I have bridges which will give up at some point. Is the change in your jaw bones permanent once you have taken Alendronic acid ie would I have to give up on my long term dental plan if I take it? If so would any of the other osteoporosis meds be better for me? I am having more blood tests this week and my doc is referring me to rheumatology and talking about the possibility of methotrexate. I am working but am considering asking to reduce my hours to make time to do more weight bearing excercise and rest as I think I am doing too much! Since I started on the Pred I have been following an anti inflammatory diet and I am taking lots of supplements including adcal D3, turmeric, CoQ10, magnesium, vit K2, omega 3 oil to name a few!

[Soraya_PMR]

The FRAX risk Assessment Tool May help you decide. You can do it without BMD for now. sheffield.ac.uk/FRAX/tool.a...

I don’t see calcium on your list of supplements?

Speak directly with your dentist re implants. My OH was disappointed to learn he couldn’t have them at age 60 because his jaw bone ‘wasn’t strong enough’ and he’s never taken pred, so that blew his plans out the water! Ask dentist his views on AA too. Some aren’t overly bothered, some won’t touch you. I guess it depends on complexity of work and their previous experiences.

Have you read Heron’s thread re strengthening your bones the ‘natural’ way? healthunlocked.com/pmrgcauk...

[Birdyloo in reply to Soraya_PMR]

Thank you Soraya, I am taking the Adcal D3 religiously! I will speak to my dentist and have read Heron’s helpful thread. I would really prefer not to take the AA but my doctor feels quite strongly that I should sooner rather than later.

[Soraya_PMR in reply to Birdyloo]

So sorry, I saw the D3 in your list and was completely blind to the word ‘adcal’! I’ve been up since 5am, that’s my excuse and I’m sticking to it 😂

Yes, doctors do promote AA rather overzealously!

[PMRpro Ambassador]

The person to ask about taking bisphosphonates of all sorts and implants in the future is a dentist experienced in the field. Once bisphosphonates are incorporated in bone that is it for life - and probably long beyond. At present they say it is to be found for 15 years - that is purely because it is that long since they started to be widely used. As time goes on it will just get longer.

Stop yoyoing your pred dose - that just adds to problems. You say pain and stiffness increased with each drop but was that immediate (overnight) and did it improve at all? Those drops are enough to cause steroid withdrawal symptoms in most people, some suffer it in response to 1mg changes in dose. If it happened and then started to fade it was possibly that rather than that the dose was too low. Get stable at the current dose - and then try very carefully reducing 1mg, possibly using this sort of approach already:

healthunlocked.com/pmrgcauk...

[Birdyloo in reply to PMRpro]

Thanks for your reply PMRpro. Within 48 hours of the first reduced dose the pain and stiffness increased and stayed the same while on that dose. The second taper was the same but the pain increased to a level where I couldn’t function so I thought I’d better start again and get some more advice. I was hoping that tapering down to 10mg would be the easiest part judging from many people’s stories on here! When I was first diagnosed and prescribed the Pred I was rather reluctant to start taking it but the doc encouraged me to try it for 2 days to confirm it was definitely PMR. So I took 20mg for 2 days and it knocked the symptoms out almost completely but then I stopped taking it and felt great for 3 days. On the 4th day PMR was back worse than ever and I accepted that Pred was at least part of the road to recovery. I tried starting on 15mg but after 3 days I was still hobbling around so went up to the 20mg that the doc had originally recommended. I suppose after that its not really a surprise that tapering has not gone so well. I will begin again and follow your advice. I guess the dentistry is of secondary importance to getting well but the osteoporosis came as rather a shock plus the side effects of the AA sound nasty and I’d rather make my decisions armed with as much information as possible. Thanks again for your help.

[PMRpro Ambassador in reply to Birdyloo]

I can only wonder what stories you have read - because I would have thought that most of us would say that the lower the dose gets, the harder the reduction becomes! But first you need to get stable at 20mg - and you need up to a month at that. This is a consultant/research based approach to reducing:

rcpe.ac.uk/sites/default/fi...

which reduces flares considerably. But you can't rush things and some people will find even this too fast. Once you start yoyoing it gets harder and you get into a mess of confusion as to why you hurt. The tortoise won the race ...

[HeronNS]

I hope you've had a chance to read my story, Soraya gave the link. Once you've got your PMR under control don't rush! No more than a 10% taper at any point and you should stay at each taper for several weeks. Considering the rocky start, the slower the better. The slower you go the less likely you are to flare. If you can maintain the taper to the point where you have reached the lowest dose which continues to control the symptoms your total pred intake will be lower than if you try to rush the dose down and end up having to go back up again. One of the slow taper plans is actually called "Tortoise not Hare" although I don't know how to find a link for you. I think it can be obtained from pmrgca.co.uk/content/home-page

But we have links in HealthUnlocked to a couple of other plans.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Janstr]

I read an article given to me by my dentist some time ago about having implants while or after taking AA, & at that time it wasn't possible. Have you thought about bringing your dental treatment forward & getting the implants before you go on AA? You should certainly have any extractions you know you may need before taking it

[Gab-Gordon]

Hi. My GP was keen for me to take alendronic acid but I refused until I'd had the scan. That showed me to have high levels of calcium and in no need of AA so I didnt take it and in the event was only on steroids a short time as I'd been misdiagnosed with Polymialgia and so in no need of the steroids I'd been taking. However I after learnt that many people even those diagnosed as having oestiopenia are prescribed daily calcium tablets instead of AA which can have terrible side effects. Even though I'm a senior lady I would always refuse it until I'd at least learned about other available alternatives.

[thomascooper230]

The person to ask about taking bisphosphonates of all sorts and implants in the future is a dentist experienced in the field. Once bisphosphonates are incorporated in bone that is it for life - and probably long beyond. At present they say it is to be found for 15 years - that is purely because it is that long since they started to be widely used. As time goes on it will just get longer.

[Birdyloo]

Thank you everyone for your helpful replies. I am holding off taking the AA until I get my full Dexa results. I had a Fitbit for my birthday and am concentrating on getting my steps up although I am easily doing 10,000 steps and double that when I’m not at work so whether it will help, I don’t know!! 😂