Hi all, had a bad couple of weeks, started when I tried to reduce my Pred for the first time down to 12.5mg from 15mg, after the first week I was feeling rotten by the 2nd week back to where I was last November when diagnosed. Phoned doctors who put Pred back up to 15mg and ordered bloods. 2 days later still feeling bad and doctors rang me to increase Pred to 20 mg and go see them in 3 weeks, my crp gone back up.. Duly did this yesterday, they want me to stay on 20mg for at least another Month but also want me to start Alendronic Acid. After a long discussion I have decided to give it a go after I have my crown fitted over one of my teeth to protect it. Had a letter from the hospital they have put me on a waiting list to see a Rheumatologist, as at my local hospital they had 3, one unfortunately died in an accident, one has retired and the other has gone part time 2 days a week. So could be next year before I see anyone, not really worried as my gp s seem to be quite up on PMR and GCA so will happily stick with them for now. Have had to go off work again, I was just exhausting myself which obviously didn't help me at all, plus I dont feel they realised what my condition entailed. Will just wait until my first successful reduction in Pred before returning to work, decided to put me first for a change. Anyway will let you know next month how I get on with Alendronic acid, cant say I relishing the thought of it but got to give it a go.
Doctor wants me to start Alendronic Acid. - PMRGCAuk
Doctor wants me to start Alendronic Acid.
Hi... Have you had a dexa scan yet? If you haven't demand one before you start AA. You may not need it. If you have osteoporosis then you can reassess then. I had to return to the full 15mg after reducing to 8mg too fast on Dr's orders. If they don't rush you you may not need to see rheumy if pmr. But dexa scan and perhaps vitd test and addition of Adcal until dexa results come through. The scan is very very unscary. Like a half polo round your hips etc.
Hi
Many of us answered your previous post regarding AA - so the advice will be the same.
If you don’t have a DEXA scan which proves you need it - don’t take it! Most find VitD/Calcium supplement sufficient.
Your body, your choice!
Have you had a dexascan? No dexa - no AA until you see you need it. My bone density was good 3 months into 15mg pred and over 7 years later of pred at 10-15mg almost the entire time it was barely changed and still good. Pred does not inevitably result in loss of bone density.
Some people seem to have no real issues. Presumably a bone scan has indicated that you actually need this “ serious” drug.
I have taken Alendronic Acid since Oct 2018- no problems so far - I follow instructions to the letter
I have been taking steroids for 3 years now for PMR. I was diagnosed with osteoporosis 18 months later and put on AA.... I stopped it last August as I had a terrible episode of ‘indigestion’ but I knew it was more than just that... I have now been diagnosed with a sliding hiatus hernia directly caused by AA according to my doctor. So be aware and careful... I took it exactly as it said on the packet. Now waiting to have a scan and see where I am with my osteoporosis... good luck👍
I was prescribed the Alendronic Acid too, back in Dec 2019. Saw my GP and ask for a Dexa before deciding whether to take it or not. Scan not forth coming, so if I decide to get one I'll have to pay privately to get one. I'm taking 600 mg with D3 and a K2 supplement too twice daily. However, my GP told me to start the Alendronic as the longer we're on Pred the higher the risk of Osteoporosis. I'll need a referral from him before I can pay for a scan. Can get quite embarrassing as it looks like I'm ignoring his advice. Not sure what to do.
Anne
My bone density didn't change on over 7 years on pred. I took 4 AA tablets before discussing it all with a different GP who agreed with my assessment of dexascan first and then decide. We need a baseline - maybe you will need AA but I refused to take them "just in case".
uhs.nhs.uk/OurServices/Rheu...
Are you sure you need a referral for a private scan?
And please could you add some info to your profile!
What info do you require? I am 72 yrs old, are you younger? if so you would expect your bone profile to be good. He has added a blood test bone profile when I have it done on Tuesday and checking my HbA1C...not sure how much the bone profile will show up. And yes, the only hospital I found that even had a Dexa scan does require a referral. Other private hospitals use a CT, who'd want all that radiation going into them to just check bones. Not me.
If my bone density was good at 65 after 7 years of pred why should anyone's be assumed to be bad at any age? The dexascan shows you. And there are a few people on the forum who had GCA, were on high doses and on pred for up to 5 years or so without ever taking any calcium or vit D supplements and their bone density at the end and in their late 70s was still OK. Another lady had a hip replacement after 2 lots of PMR and was told how good her bone density was - at almost 80.
Have you asked Southampton if they require a referral - it can't be that far from you. But if you are going privately and you need a referral, you simply tell your GP you need one.
The bone profile only shows if your bone metabolism is OK, it doesn't replace a dexascan - they should not refuse or charge you.
I hear you and you're right we shouldn't have to pay. So far since being privately diagnosed I've spent almost £2,000. Not complaining as I did end up with a quick diagnosis instead of waiting months and months on the NHS. I was lead to believe that women during their menopause years (and not sure we ever come out of it) we lose bone density. Due to the fact that money is scarce these days in the NHS GP's are probably told just to put patients on the Alendronic Acid as a safe guard, cheaper than paying out for scans for everyone. Just guessing as many of the drugs we're all taking are so cheap especially Prednisone. However, I had to pay for my first box of Pred privately, they cost me £10.30 for one month supply. At least by me going private it opened up the appt for someone else to be seem. Southampton is quite a long way from me, the hospital
I found to have the scan isn't far away at all. Just hate to keep bothering my GP about it, so wish I didn't need a referral. Comes to something when all we're trying to do is look after our own bodies. The rheumatologist is happy to refer me but that would mean another appt with him at the cost of £250 plus the cost of the referral letter. It would just go on and on and I'm self funding.
They do make assumptions about bone density in age and yes, that is why some doctors just hand it out automatically. They have also, as a result of a very efficient marketing campaign, been brought up on a diet that Fosamax and its friends (bisphosphonates) are wonder drugs which have no adverse effects at all so can be used ad libitum and there will never be an elderly patient with a fractured hip again. Unfortunately, as is often the case, once a class of drugs is used widely in a massive population the downsides eventually appear even though they were not apparent in the clinical trials. And in the last few years this has been the case for most of the "bone protection" drugs.
If it were the case that it is harmless I would have no problem - but they aren't. We have in the past had a few members of the community who have suffered the spontaneous fractures that are a risk with bisphosphonates used for any length of time as microcracks form that make the bone MORE likely to break rather than strengthening it. The wonder drug Prolia is no longer a short term option - when it is withdrawn there is a rebound loss of bone density which happens very quickly so the patient must either stay on it long term or switch to oral bisphosphonates, just the thing it was probably used to avoid.
A major problem in the older patient is polypharmacy - one drug may have a given adverse effect but in combination with another it may be a different matter and totally different. The more you add, the greater the risks. And polypharmacy can kill when you don't know these effects. Even mixing 2 drugs nearly killed my husband last year and has resulted in several weeks in hospital and multiple prodcedures.
They make a big fuss about pred and bone density - but at the same time hand out PPIs for "stomach protection". The PPIs used long term (which they are not meant to be) are even more likely to lead to loss of bone density than low dose pred. But that is never mentioned.
You sound just like my friend and everything you've said is correct. The Pharma companies cash in on these drugs. And you're also right about PPI's. I was told to take 2 X 20 mg daily. I take just the one and if I' lucky enough to come off the Pred at the end of the year that will finish too.
I've now written a letter to my doctor requesting the referral letter so I
can see for myself the condition of my bones. If they prove up the creek
I will probably have no choice but to take it for the duration...hopefully,
my bones will prove as good as yours.
So I'll pay the £112 for the scan with no guilt of robbing the NHS of this
money.
Thanks for your input, always so much appreciated. You're so very knowledgeable about everything, which is good to know.
Kind regards
Anne
If your private doctor has led you to believe you will only be on pred for a year then I fear you are very likely to be disappointed - only 1 in 5 patients achieves that and then remain at an increased risk of a relapse. PMR is a chronic condition and at least 2 studies support the concept that something IRO of 4 to 5 years is a more reasonable expectation (and what we see on the forums) and even longer at a low dose for something like half of patients.
I appreciate doctors dislike telling patients they are going to be on pred for so long - but it is us on the forums who so often end up breaking the news to patients and picking up the pieces when they are upset.
I understand and under no illusion that I will be any different. But I can only live in hope. All I can go by is that the Pred worked after a couple of hours of taking it. On the plus side even before diagnosis I wasn't feeling any fatigue or fever etc. Just the horrible pain, and pain on the right side of my head....all vanished once the pred kicked in.
I was originally told between 2/3 yrs, horrified yes, but did accept it. I have a very positive husband and daughter and they keep telling me that
everyone is different our bodies will do what it wants to do. It was he, the
rheumy that decided to start to taper, not me and so far so good, but, equally, know it's early days !!
I had to ask for a Dexa scan as the GP said 'you MUST take AA once you have been on 7.5mg or more of Pred for 3 months' which sounded like generic advice to me. The scan came back as osteopenia and suggested 'bone therapy' (euphemism for bisphosphonates). But I've never had a bone scan before so for all we know my bone density hasn't changed in years. I then did some reading around it and my understanding is that bone thinning is very common after menopause, also that bisphosphonates actually prevent bone renewal as well as bone loss. Plus they're only safe to take for three years, and the serious possible side effects of taking them can remain for decades. I asked mg GP about all these things and she didn't deny any of it. We agreed that instead of AA I would try to manage it myself by upping my daily calcium/D3 (I also take K2 and magnesium) and up my level of weight-bearing exercise.
I realise everyone is different but it rankles me that so much of the advice is entirely generic, aimed at 'the majority' and not necessarily relevant (and possibly even harmful) to those of us at the thin end of a bell curve.
I hope you find what works for you and wish you the best of luck.
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