I have a telephone appointment with my GP on Monday and want to tell her I’d prefer to stop taking Alendronic Acid.
I was diagnosed with osteoporosis, probably brought on by prednisolone which I’ve been taking since March 2020. Started at 15mg, tapering in 1/2mg, now at 8mg.
My Dexa scan in January 2021, results came in lumbar spine T score -2.7, lumbar hip T score -2.7
Prescribed 70 mg Alendronic acid once a week, which I have been taking.
Also following good advice on this forum, particularly from HeronNS -
From February 2021 -
Purchased weighted walking vest, using daily, which can stimulate bone growth, I’m very gradually increasing weights + time worn.
My diet is good, plenty of fresh fruit and veg, milk, yogurt, eggs, cheese, + 6 prunes daily.
Daily Medication -
Prednisolone
Calcium + Vit D
Magnesium
Vit K2
Omega 3
I walk 10,000+ steps at a good pace each day.
Three times a week I do weight bearing exercise class online.
I’d like to have a second Dexa scan next January (privately if need be) and consider my options at that time?
Just wanted to hear anyone else’s thoughts on my decision before I have the appointment on Monday, I find this site absolutely invaluable and thank everyone who participates 😄
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Tinasleepyhead
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I feel that you're doing all the right things to help your bone health. I wish I had your commitment. You have every right to refuse any medication if you think it's not in your best interests. Others will advise on your January dexa scan results.
Those t-scores are low - and I would suggest that at PMR doses of pred, it wasn't only the pred that led to the low scores. you probably already had low bone density before.
As 123-go says, it is your right to say no, but even I would consider taking something with scores like that. My husband tripped and caused a spinal fracture in January last year - he is only just starting to really recover. He can no longer drive and walking is hard work.
Thank you for your comments, I’ve taken a look at the RNO site and will weigh everything up before my decision on Monday. 😀
Morning, you're extremely committed, well done you. I too have osteoporosis. Without getting my results out I can't remember what they're. I refused the Alendronic Acid, instead my rheumy prescribed Risedronate 35 mg once a week. Maybe you could request the same.
Good Morning Staplehurst, I was interested in your reply and related to it. I had DXA scan last September which revealed a normal range for spine, but a -2.4 for both hips. GP put me on Alendronic Acid in October and within 2 weeks had debilitating pain in (L) knee. I have stage 4 OA knee in both knees. GP took me immediately off the AA and said he’d put me on Risedronate, but hasn’t as yet! Do you have any side effects from this drug? I’m so wary of taking this medicine again! I’m pain free and have been since AA stopped. Glucosamine is working a treat so far!
Hiya, absolutely no side affects whatsoever. But continue with the Glucosamine, as I've heard that's really good to take. I think many of us suffer from OA too, so it's hard to know what pain belongs to what disease. Just keep taking the tablets, as the saying goes, not much else we can do. So you don't have Polymyalgia Rheumatica then, you're are so lucky if you don't as no cure only steroids to try and keep inflammation at bay.
Hello again AnneThank you for your prompt reply. I do have PMR yes, and was diagnosed with it in July 2020. All going ok so far, but had a few blips with reduction last week, but with this wonderful group of people’s help and my GP, am staying on my 7 mgm of Prednisolone for another month.
Interesting about the Risedronate too, and that gives me heart that you haven’t been affected by it. Is the 35 mgm dose lower than 70 mgm weekly as for the AA?
Morning Barbara, lower 35mg of Risedronate as opposed to 70mg of A.A. I'm really surprised you've been prescribed Prednisone for OA, particularly since you have osteoporosis where steroids would make it worse. I've said in a post a few weeks back about many women suffering from osteoporosis and don't know they have it until they break bone and are scanned.....menopause has a lot to do with it too. I'll check my results later and see how they compare with yours.
Thanks for your reply. As I mentioned in the last post to you ... I have PMR! It was diagnosed in July 2020 and I was started on 15 mgns of Prednisolone and now down to 7 mgms. AA gave me debilitating knee pain, and when I quit it on GP’s advice all the pain went. He mentioned Risedronate as an alternative, but hasn’t started me on it yet.
Sorry, I was getting confused with another post from someone else. When I was diagnosed with PMR in Dec 2019, I did well, reducing from 15 mg, until I reached 8mg, sadly, GCA kicked in and I had to started all over again up to 40mg. Still slowly reducing using the dead slow and stop method. It's going to take forever to get off the wretched Pred, but hey-ho, anything is better than the pain from PMR. I hope you continue your journey on Pred with no hiccups.
Hi Anne - no worries.. we’re all interacting with each other! I’m so sorry that GCA developed. Did it happen very suddenly? How horrid for you, as you were doing so well. I’m sure though that as you did so well when first diagnosed that you will do so again. Yes the pain of PMR is quite extraordinary... really frightened me when it kicked off. I didn’t understand what was happening to me, although as I wrote a few months ago, I’m sure that I had prodromal symptoms of this illness that I put down to getting older. Thank you for your kind wishes and support, and I send all good wishes back to you as well. xx
Hi again, yes it was nuisance that I ended up with GCA too. I experienced the jaw claudication and tender head, just those two symptoms, but knew exactly what it was. No temple pain or headache at that time. However, when I was eventually diagnosed I had to go private for this as my GP was treating me for OA, even prescribing morphine for the pain.....frightening really as GCA could have kicked in during that period and potentially I could have been left blind (I only have the sight in one eye, but that was due to having contracted bacterial meningitis in 1994) negligence back then too. During both lockdowns I've had to speak to my rheumatologist a few times, again privately, just for some advice when I experienced a small 'flare up'. But I now see him via the NHS and my next appointment is in June. I've been waiting over four months to see a neurologist, due to having three numb toes on my left foot. I thought about seeing one privately, but thought better of it as the cost is daft. An example I paid the rheumy £175 for less than a ten minute 'phone consultation and I've had four of those during the past year and a half. The cost of diagnosis was almost £3,500 back in 2019....mad isn't it ? But you have to do what you have to do...no point in having savings when our health is up the creek !! Just as well there has been no holidays or socialising since the virus took off, which enable paying out for my diagnosis. A friend of mine is just about to pay out £7,000 for treatment on her front tooth that has to be done, she agrees that it's a good job no holidays last year and again this too. Today sees me having a little pain in my left heel, no idea what it can be, it seems to come and go but been with me all day today. Now to start dinner. The days become so repetitive, don't they ? Get up, clean, cook, shop, go to bed, then start all over again. But, better than the alternative.
It’s been a horrid year for you, and I’m really sorry. I wouldn’t say this year has been a bed of roses for me either, but we just have to accept all this I guess. Yes the cost of private consultations, acupuncture and other stuff all adds up. I have private health cover too, which is eye watering, and sometimes I wonder whether it’s worth it all! I pay out as it will cover TKR if I need it done, which I reckon I will in the next 2 years. My GP is very good & I must say all the practice is too.
I’m hoping for us all that Europe’s 3rd wave won’t wash up on our shores, as I think there will be very real problems if we have another lockdown. As you say it’s all very repetitive, and we’ve endured all that ... and there is a hopeful beginning of the end, next month.
I wish you well, and hope that this year you will get much better, and you will get all the support from the medics that you need. As someone well known said ... ? Bette Davis ... ‘old age is not for softies’! Keep smiling! 😊 Barbara xx
I’m so glad about that! The warm sunshine is really making a difference to us all I think today. I feel much happier too. Have a lovely Easter with your family.
10,000 steps a day and a weight vest! I’m knocked out by that commitment. I manage about 7000 carrying just my own weight and often need a nap after that !
Thank you for your kind comments, I consider myself very fortunate as the only pain I get at present is piriformis/sciatic which is manageable. In fact the walking and exercise really help. I feel so much for others who are suffering so much pain and always willing to give help and suggestions, this is such an uplifting site, 😀
Yes I understand a lot more from reading on this site ! I notice you say you suffer from GERD. I got this very badly a few months back, waking up after inhaling stomach acid is something I absolutely hate and will do much to avoid. I have a feeling the pred has contributed to this, but having now made several changes eg don’t eat or drink anything 2+ hrs before bed, sleep a little propped up, managed to reduce the pred and now cut out bread carbs I am thankful to find I have it under control.
Alendronic acid gave me bad stomach cramps so I wasn’t too happy taking it! My very helpful doctor prescribed risenodrate sodium instead...They are both biophosphonates & are prescribed for osteoporosis, but I have no stomach pain taking Risenodrate. I do have balance problems due to other issues & I don’t want to risk osteoporosis or broken bones! (Broke my little finger so severely I ripped the tendon off the bone 2 years ago & had to go to hospital each week for 8 weeks & wear splints, etc etc...& that was just a little finger)! I’m too active to risk ‘breakages’! I am desperately trying to lower all my meds, but if you’ve been diagnosed with osteoporosis, isn’t this the most effective drug? Does anybody know at what stage it’s safe to stop, please? No Pred at all...or 1, 2 mg? Of course, it’s up to you, you can stop whenever you like! Would be interested to know what your doctor says, if you are willing to share it, please?
No pred at all - after being on long term pred your adrenal function is blunted. 2mg of pred is often plenty for your body to function even though your adrenal's are not producing enough cortisol on their own. You must reduce the dose slowly - but at 2mg the likelihood of there being any significant effect on bone density is very small.
Alendronic acid isn't the most effective drug for improving bone density - in the form of Fosamax it was the first widely available and most effectively marketed drug. It is now also the cheapest - and riding on its history it makes the company a lot of money: sell it cheap and pile it high ...
Very interesting, thanks for your help. I will continue risenodrate until I’m clear (currently on 3mg, hoping to drop to 2mg or 2.5mg beginning/mid April, but will see what life brings!) Sorry to be vague this morning, shoulder pain, day 2, & wondering if flare on its way..oh & bad hip pain yesterday, but one side only! Take care, keep safe, S x
Yes, precisely why I can’t work out what’s wrong! Another storm with 40mph winds today,,.as I’m allergic to moulds & spores which heavy rain drives out of ground into air, it could be my lungs in trouble! It’s not warm, either! I see the Swiss alps have a huge new dump of snow, too! Happy days, please be careful, S x
No snow here - all the north side and it can stay there now! No use to man nor beast at this stage of a winter where the pistes never opened - and with a bit of luck won't despite the demands. You can walk up the mountains though - having cycled there with your skis on the crossbar as they showed on the news yesterday!
Thank you for your in depth response Pixix, I’m reading all these invaluable posts and will make a decision by Monday, I’ll let you know how my appt works out. 😀
Have you had side effects from the AA? I have very poor bone health, worse than yours sadly, but couldn't take the AA as it made me feel dreadful and put me to bed. Sadly I got lost in the system and with other things, losing my husband etc, I didn't keep on top of asking GP for alternatives. Once diagnosed with LVV and a Dexa scan I was given a Zalendronic acid infusion which is annually I believe. Wasn't particularly keen, but didn't really have a choice if I was also starting pred. I had nominal side effects which was a relief. I can't remember now but think my T score is -3.7, so pretty rubbish. Hope you find what you need. You are amazing with all the exercise you are doing already, but maybe you need an extra boost to avoid it getting worse. Had you had a Dexa before Jan? I had them regularly so had comparisons, mind you watching how far down it had gone over the years was pretty depressing 😂
Hi Sophiestree - I haven’t had any side affects from the AA. Unfortunately had not had a DEXA scan previously so have nothing to gauge by, although I suspect I would be susceptible in view of my weight, BMI. I’ll post after Monday’s appt. 😀
Thank you Emmanuel, interestingly my sister has the prolia every six months and it has improved her bone health, she lives in Canada, I live in the UK, not sure if it would be offered here.
Tina, you are doing really well with your diet, supplements and activity. To be able to compare results, Dexa scans need to be done on the same machine, so a private scan elsewhere may not give a true comparison. I have had scans every 2 years on the NHS.
I take sodium risedronate with no side effects, so that might be something to discuss with your GP. Four years ago my spine scored -2.6, but last month it was -2.4, so I'm doing something right! My activity level is nowhere near yours, but my diet and supplements are virtually the same, including the prunes!!
Thank you Rugger, good to hear your spine score had increased, I’m really interested in receiving all these helpful responses, amongst other options I’m looking into Risedronte. Will post again after Monday 😀
Hi, I took AA for about 18 months till it gave me a sliding hiatus hernia, the most painful thing ever! It has changed my life considerably with what I can and can’t eat and drink. I am now fighting the NHS to see my scan results as they just want to pump AA or the equivalent into me by intravenous means. I have become very hesitant with taking drugs that I’m not convinced are helping...obviously I need my steroids for the PMR...I’m on 8mg at the moment and struggling to reduce. Good luck.
Like some of the others I was on Risedronate 35 mg once a week and that was with very good bone density results. I was taking pred and weekly injections of tocilizumab. My doctor wouldn't let me come off the Risedronate until I got down to 7.5 mg of pred.good luck on Monday and I hope you get the treatment you want and need.
Wow you sound like your doing great, fitness wise. My husband has had PMR for just over two years now (age 63). He used to play sport every day before this and was as fit as a flea, but any exertion now can knock him back the day after. He is also on AA 70mg a week, has been since the start, and is now down to 3/2mg of prednisolone a day, wondering if he should now be coming off AA?! Do you need it at this low does? The chances of talking to our doctors at the moment are slim!! He did have a bone scan at the onset of this and as far as we know it was good, I think it was recommended to have one every two years so maybe he should sort another one out. Best wishes with whatever you decide.
Hi Hollieby sorry to hear how PMR has affected your husbands love of sport. I have so much sympathy for him, sport helps in so many ways, health wise physical and mental, let’s hope eventually when the PMR has gone away he will be able to resume his activities, obviously taking it gradually. 👍🏻
Hi TinaYou have clearly done your research. Just to add to your cornucopia of supplements. There is a very useful book you may have come across called "Your Bones" by Lara Pizzorno which supports a natural prevention of osteoporosis. A large quantitity of peer reviewed research has come out in favour of Strontium as being particularly helpful. But NOT Strontium Ranelate which has side effects but rather a more natural alternative such as Strontium Citrate. I would avoid any of the biophosphonates personally. The book will tell you why.
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