I know many of you will know I take Hydroxy, Prednisolone, blood pressure X 3 Gabapentin tablets. Also that my rheumatologist “discovered” that I had been left on Prednisolone for nearly 2 years with no review. Anyway, last time I went to see him was because he decided that 8 weeks was long enough to wean me off completely and in week 5 my body went crazy and into massive flare. After advice here I said I wanted to reduce by 1mg a month, which received “good idea”. He then said I needed a calcium supplement because my bones could be weak because of Prednisolone. He would advise GP to put it on my repeat prescription. 2 weeks later and no calcium so I phoned GP and the receptionist said she would sort it. Another week later out comes my home delivery of Allendronic acid. 1 tablet a week. I read the instructions but not all the side effects apart from the one that said my teeth could fall out!! Took the first one-no problems. 2nd one, bones were hurting more than usual, but I’m coming down off Prednisolone. 3 rd one- within a few hours I had the most horrific headache and started to feel dizzy. I thought the headache must be causing the dizziness. Went to bed, lay down and the ceiling was spinning so fast I felt I was going to throw up, but couldn’t get up off the bed to do so. It was so frightening. That was the Thursday before last and I am still the same. I try to get out of bed and I fall back down flat on the bed 2-5 times every time. I phoned the GP explaining and saying I was expecting calcium tablets not these. I got a curt response that the rheumatologist had advised the type of tablet to prescribe. I also had jaw pain (TMJ) which I have with Lupus/Sjogrens always but it was worse and he advised me to see a dentist if I thought I had jaw pain as it was important with the medication to do so. Totally uninterested. That pain is back to normal levels. So I haven’t taken the tablet now for 1 week and 4 days and I am still spinning like mad, still can’t drive, have fallen to one side and been caught by my husband numerous times, and am now walking around with a panic button around my neck to alert my husband. Anyone else experienced this? Any advice?
Allendronic Acid nightmare?: I know many of you... - LUPUS UK
Allendronic Acid nightmare?
nhs.uk/medicines/alendronic....
patient.info/medicine/alend...
Dizziness and vertigo are mentioned as side effects - and that if troublesome you should speak with your doctor. Since your GP is totally uninterested - and I would report him for being unhelpful to be honest - if it were me I'd call 111 and ask to speak to a doctor for advice, explaining why. You are obviously not safe to be left alone so that requires medical input. I imagine YOU can't get to HIM, and you need to be examined. It may mean the ED for an expert opinion. It COULD be coincidence - but in that case, you have severe vertigo that needs a diagnosis.
Have you any other symptoms of an allergic reaction?
"A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), dizziness, trouble breathing."
Hi, no other side effects. I did read the instructions about how to take it and followed them religiously. Since this has happened I checked the side effects properly. I don’t read all the side effects because I think sometimes we look for them before they manifest and there can be a bit of mind over matter. But this is terrible. My husband took me to a friends house the other day, and she has two high steps to her house. I had to look down for safety and nearly face planted in front of her husband when he opened the door. I was in tears. My friend thinks this is coincidental vertigo and not to do with the tablet. But it started within a few hours of the tablet and the GP said to stop them so he must think so too.
Be aware that Allendronic acid (tablet) is a nightmare drug to administer. Must sit upright to take plus sitting still for 1/2 hour. Jaw necrosis can also happen!😱
This means that the whole jaw bone can crumble away.
Was prescribed it for a year until I found out. So personally refuse to take. I love my bone structure and cannot tolerate this obnoxious side effect, No way.👆
My Prednisolone is 5mg/2 days so effectively 2.5 mg per day. Still on prescribed iCal D3 daily for possible steroid induced osteoporosis?! But!
KEY FACTS from NHS website:
“Take alendronic acid first thing in the morning, before you have anything to eat or drink and before you take any other medicines. Stay sitting or standing for 30 minutes so the medicine does not irritate your food pipe (oesophagus).🧐
It's important to look after your teeth and have regular dental check-ups while taking alendronic acid because it can sometimes damage the jaw bone, but this is rare.🧐
Alendronic acid is known as Fosavance when it's mixed with colecalciferol (vitamin D3)…” etc🧐
I only took three in total. I’m on 8mg Prednisolone daily at the moment as part of my reduction program. Since this has happened we have bought vitamin D3 and calcium tablets for me to take. I won’t be taking these Allendronic acid again. I have since heard of loads of people taking it with no problem whatsoever. 🤷♀️
I started on Allendronic acid.It really upset my stomach,even though I take Lanzanprole.
I was then prescribed Resedronate. 35 mgm once a week.
So far it’s been ok
I've been steroid dependent for 8 years now and have always been given bone protection meds...last dexa scan was 👌.I'm prescribed accrete d3 twice a day x
I just can’t believe he just hasn’t thought about this before. It really is a lottery as to what health care we get eh?
Certainly is very poor as steroid patients s should be given bone protection meds at the same time.I'm supposed to have a yearly dexa scan but hadn't had one for 3 years due to covid Rheumatologist ordered one saying they'd give me extra bone protection meds if needed but scan showed my bone protection works and my hips had improved minimal loss in lower spine so the accrete works for me..have you considered asking for accrete d3 on prescription?
Good luck with your drops ..I'm on 9.5mgs dropping monthly but just had my mmf increased to try to aid steroid drops X
I've never heard of accrete sml. Is it as hard to take as alendronic acid? Did u get side effects when you started it? 🌈😽😽Xx
Hi KK .I was on calcichew but I think It was discontinued so was switched to the accrete.had no issues what so ever with it.xx
Thank you 💜🌈😽😽xx
Hi Bowenlady 🤗I had a very similar reaction to Alendronic Acid. First dose was fine..second week I had bone aching especially in my hips n jaw which I hadn't experienced before. Third dose I spent 36hrs in bed writhing in pain with nausea, stomach cramps, vomiting, headache. I don't recall being dizzy but I didn't really get out of bed!! I stopped it!!
When I spoke to my rheumy about it he said that it's normal!! Not for me it ain't mate!! 😹He said that Alendronic Acid side effects usually stop after six weeks of taking it. I'm not taking any bone protection at the moment. 🌈😽😽Xx
Yes I am of course I am taking bone protection med. I'm on Evacal which is vitamin D n Calcium. Sorry it completely slipped my mind!! 🤦😹🌈😽😽Xx
Some people just can’t take them perhaps you are one of them. I would suggest you speak to your gp or rheumatologist and ask if you can have a calcium infusion every 6 months
Please please please don’t be alarmed by the side effects .My mum and millions of others have taken this drug for years . The alternative to not taking it can be devastating for some .
Depending on your Dexa scan results you may be able to try the alternative which is a 6 monthly injection . Obviously I’m not a dr but the osteoporosis society is a fantastic helpful charity and have a free helpline . I would definitely call them . Big hugs xxxx
Dexa scans! Right! Dexa is a word that has never passed my rheumatologist or GP’s lips in my presence! No dental check recommended before starting the Allendronic Acid either. I just don’t understand how there can be such different treatment all throughout the UK. Don’t get me wrong I appreciate the wonderful health care we get compared to other countries, but why is it such a lottery?
I too am trying to reduce my pred meds. I am coming down from 7.5mg (taken for at least ten years) to 6mg and finding some painful and difficult days. I will try to get down to 5mg in a few months.
I would ask your rheumy for a dexa scan, if your numbers show osteopenia then you do not need to go straight onto osteoporosis meds. I would encourage you to have a full blood test, including Vit D, iron etc.
Be aware that PPI's like Lanzoprazole can affect the absorbtion of vitamins and minerals through the stomach. Perhaps I should have read the leaflet but now I know, I have reduced the strength from 40mg Omeprazole to 20mg.
Unfortunately I thought I would be one of those people who would never get osteoporosis but after several very painful spontaneous vertabral spinal collapses, I am doing all I can to add to and conserve my calcium in my bones.
There are over the counter calcium tablets, Calcichew d3, lemon flavoured chewing tablets, also Adcal. I suspect your rheumy may have asked for these calcium tablets to be prescribed to avoid prescription charges, and your gp misunderstood.
Nothing stops you taking calcium tablets, although be aware of the timing with other meds. They may give you a little indigestion but small price for bone protection. I take Adcal and a vitamin D soft gel capsule, both agreed by my gp. Amazon is pretty good as are other online chemists. Multivitamins do not do the job, they are full of fillers and just traces of minerals and vitamins.
The osteoporosis meds do need to be prescribed and before you take any biphosphonate which most of these are, it is advised to have a full dental check up. If you have a tooth which needs to come out it should be done before taking the meds.
My dentist is aware of this and I have a deep clean every four months. As yet I have not had a problem and I have TMJ too.
Take a look over at the Bone Health forum where you can find excellent advice, also a number for the Royal Osteoprosis Society where the phones are manned by nurses who know their stuff.
Be persistant, this is for your bone protection. Good luck!
Thank you. I learn more from the people here than any GP or consultant. X
I also had something similar. I was diagnosed with Lupus in 2008.
At first I wasn't put on Prednisolone. But after about 6 months my consultant started me on it at 10mg. I took this dose for about 3 years. Then on one visit, the consultant asked if I was still taking Alendronic Acid. I asked her what this was. She then realised she'd forgotten to put me on Alendronic when I started the Prednisolone!
She sent me for a Dexa scan and it came back with me having severe osteoporosis.
I was devastated as I was told I couldn't play contact sport, ski or do anything that can cause damage. Problem is, I play football, surf, ski and carry out other extreme activities.
I was devastated, angry, upset. Everything!
I even contemplated legal action for negligence. But couldn't undertake this path due to knowing that the consultants actions weren't malicious and my health was her concern and she did try her best.
That’s awful! There are so many cock ups! I was on 40mg to start with , reduced over time to 30, 20, then 10. Then covid came and I was kept at 10. Our system is you ring the rheumatology nurse which is just an answer machine and leave your name, address, date of birth, hospital number and what tablets and strength you want. They then send the prescription in the post. If you try to phone them for advice they “hope to reply in 48 hours weekdays”. I phoned once and left a message for help, I was in so much pain, everything was swollen, I had round lesions all over my legs and was feeling I was in a very dark place. About 8 weeks later I still hadn’t had my callback! Now they say on the answer machine that they can only consider phoning people back who are in flare up! I’ve never been offered a Dexa scan, and didn’t know what they were. I have never been told Prednisolone can thin my bones. I have a recent history of falling too, so you think it would twig on someone. It was because of two nasty falls recently that he remembered on my last visit to him. I feel really miffed about this, and can only guess at how devastating this news was to you. They are just not taking enough time with anyone. Wouldn’t you think there was a protocol that they all follow? Inflammation, pain, swelling - steroids - Dexa scan - some form of calcium for the bones. It’s not rocket science surely????
Spot on about not being told about the possible side effects of prednisolone. Possible diabetes, thinning of bones, blood pressure etc. All I was told was I could put on weight - which to me was a positive as I'm rather on the thin side!
And now the osteoporosis is so bad, I've been told it's irreversible. Absolutely devastated as as I mentioned above, I'm heavily into my sports and active stuff 😢
I’m so sorry for you. That’s really sad and devastating news. I’m so fed up of being kept in the dark. The most enlightening place is this forum. X
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