Hi all - I'm a 54 year old woman with PMR diagnosis confirmed several weeks ago by rheumatologist. I've really appreciated being able to get lots of info on this site
Have been on 20mg Prednisolone for 2 weeks. I realise I have a journey ahead but am enjoying the "honeymoon" and love being able to walk my dogs, get to Pilates class and lift my arms to get my hair in a ponytail again ! I was prescribed Omeprazole and Adcal D3 by rheumy but GP has added Alendronic acid . I'm now in a quandary about whether to take it or not. The bone density loss and potential fractures due to steroids sounds scary ( especially as I have isthmic spondylolisthesis) but the side effects of AA sound worse. Has anyone seen a quantified figure for a reduction in risk of fracture if you take AA ? I'm thinking of paying for a DEXA scan to check my bone density at the moment and hoping I could reduce risk with a combination of supplements, diet and exercise . Any thoughts on b
est combination of supplements?
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catocat
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Thanks - it's good to hear of someone who has managed to take AA with no problem as there seem to be lots of scare stories online. But still hoping not to have to take it.
Have taken it since October with no problems at all. My dexascan was good so they recommended once I get down to 15mg to stop taking it as they don’t think it’s necessary with lower doses. X
I have GCA and PMR. Started on 60 mg, increased to 80, now diwn to 50mg. I had DEXA Scan and the results allowed me to confidently decline AA... at least for now. Best of luck!
I was on Prednisolone for several months before supplements were suggested, then I was prescribed Evacal D3. It tastes horrible, so I decided to buy my own supplements from Holland and Barrett. After having seriously low Vitamin D blood levels, I now have good blood levels of Vitamin D and Calcium. I have had several doctors wanting me to take Alendronic Acid, with a prescription even getting as far as turning up as a box of tablets in with my Prednisolone. I left it in the Chemist. I already knew about the side effects of AA before reading about them on this forum, so I already had firm views about it. I have a history of lactose intolerance, and in my younger years wasn't very good about ensuring I had enough calcium in my diet. I've also just gone through the menopause. Hence, I have requested a DEXA scan, which is all booked up for the end of April. In the meantime, I'm doing everything I can to strengthen my bones (diet, exercise and remembering to take my supplements)... I hope it's not too little, too late and I end up needing to take AA. Finger crossed!
It will make more sense when you get your DEXA scan results. You’ll be able to come back, pull up the recommendations and compare your numbers. That’s what should help guide your decision.
Won’t your doctor send you for a DEXA scan? It is good clinical practice before prescribing a heavy duty drug like Alendronic Acid. I put my foot down for one after being bullied by a GP who wrote a letter to my Rheumatologist intended to incite more pressure to take AA. The results of my scan came back,and I will repeat it again, showing that I had the bone density of a 30 year old. The talk of wheelchairs stopped. I do have cervical spondylosis, so my neck can’t be 30.
I feel worried about taking AA - so happy I don’t have to ( side effects, reports of more fractures when you’re on it etc.)
i didn't query the addition of the AA prescription with the GP at the time and we only discussed the need to stay upright for 30 mins after taking it . It was only once I read the data sheet and more entries on here that I got really concerned. I'll go back and see the GP this week. I think there is a long waiting list for DEXA scans in Edinburgh which is why I mentioned paying for one to speed the process up.
I had this discussion last week on phone with GP. I rang to request a prescription for a Vit D/Calcium supplement as, despite my best dietary efforts I was already 'insufficient' in these prior to steroids and the Rheumatologist hadn't mentioned it when she started me on Prednilisone.
GP was happy to prescribe Calci-D and then as an afterthought he suggested that I would probably also need bisphosphonate.(sp?) so I asked if I should not have a Dexa scan first. He replied 'We don't normally do them because we just assume everyone will lose bone density on steroids!' I told him I would have to look into it further before taking the drugs, so he just said 'OK, maybe have that discussion with your rheumatologist'
Just tell him you will consider AA AFTER a dexascan - not before. Because you know several ladies who have been on pred for several years with PMR/GCA and DON'T have low bone density.
Osteoporosis runs in my family, so I too was worried about bone loss. I’ve just had a dexa scan and waiting for the result before I decide on the AA. I’m surprised your GP or Rheumatologist hasn’t requested one for you ?
Had a scan in 2014 (fractured pelvis skiing) and another scan in 2017 (broke hip) and AA prescribed plus ad cal due to results (osteoporosis). Happily taking both and then I got PMR, joined this site and read about health concerns. Not so happy but not really a choice. Diet is completely focussed around eating healthily and to combat inflammation (no sugar, low carbs etc).
It didn't suit me and caused terrible hip pain for 3 days or so afterwards. I had dexa scan after a year after advice on this forum. All was ok for my age (56...no 57 today!!). Advised adcal which I try and remember to take twice a day.
It's a big decision especially as recent research not positive ( you should find previous discussions on AA on the forum. I was pressured by Dr and rheumy. My dad and sister took it and I wasn't happy about them taking it. The rheumy said "you must take it...the women who you saw leaving has had 3 surgeries on a broken ankle because she didn't take it" well firstly we have different medical and familial histories and secondly...patient confidentiality!!!
If I were you I would take adcal but refuse AA until scan indicates you need it. Also try and find heronns guide to helping bone health.
First of all: dexascan. There is no guarantee that you will lose bone density on pred, mine had barely changed in well over 7 years on pred. much of it at above 10mg. It is still well towards the good end of osteopenia with t-scores of -1.3 or better. It may of course be the case that you already have low bone density - but it isn't due to pred at this stage. And if you are shown to need AA, not until both calcium and vit D levels have been checked and sorted out if they are low and investigated if high (less likely).
Omeprazole can cause bone density problems too - many of us have never used it and if your GP will give you gastro-resistant prednisolone you won't need the omeprazole, which comes with its own set of unpleasant side effects too for many. I have never taken it because of pred, just for a week or so for other reasons. Which is how it is meant to be used.
and HeronNS has also written how she avoided AA and friends altogether, improving her bone density from -2.0 (treatment recommended) to -1.6 (no treatment required) in a year.
After 8 months on pred and a PPI (Lansoprazole) I eventually had a DEXA scan which showed osteoporosis. I felt I had no choice but to accept a bisphosphonate drug, but was prescribed Risedronate instead of AA. I don't know what the difference is, but the pharmacist told me AA is cheaper! I've been taking Risedronate for just over a year with no apparent problems. I'm due for a repeat DEXA scan in January 2019. I have 5 prunes every day on my porridge, as well as calcium and vitamin D supplements a-plenty! My vitamin D level was really low, so that was treated with a megadose of the vitamin for 8 weeks, before I started the Risedronate.
Unfortunately AA is often prescribed as a prophylactic, See Hev1964's post. Do not agree to take any drugs without a DXA scan first. Do not consider any osteoporosis drug if your bone density is good, or they say you have osteopenia. If you get a diagnosis of osteoporosis there are ways of improving your bone density without the use of drugs. In fact the protocol for improving thinning bones is something we should all be following anyway, no matter how good or bad the bones appear in a DXA scan, whether we are taking steroids or not, or even if we have opted to take OP drugs. Doctors are still saying that bones cannot be improved through diet and exercise, but that's only because they don't know. Many people are finding out that we can indeed reverse any bone thinning quite quickly. I am one of them. Hopefully in the not too distant future this information will infiltrate the medical profession, although it's often hard for them to get past the blandishments of the drug companies.
Hi and welcome to the site catocat. I hope your pmr journey will be relatively short one. I have taken AA since starting Prednisolone 10 months ago. No significant side effects that I can see but would rather not take it if I don’t have to. Both my GP & Rheumatologist advised that I would have a scan when off Prednisolone. However, no guarantee when that will be. Anticipated to be about another 7 months (now alternating 4/3mg).
I have also considered arranging my own scan as I would like to know my bone density. I aim to ask about AA at my next Rheumy appointment in July. In the interim, You have to trust that you are prescribed medication in your best interest. If you are not experinecing side effects then that is a good sign. Fingers crossed that it will not be required long term.
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