Have been prescribed 70mg in a once a week tablet by my Rheumy, and have not taken them.
Last Rheumy appt was Sept 2016 when he said I needed to be taking Alendronic Acid. I questioned him and he agreed to arranging a dexa scan.
Just got the T scores:
At neck of femur -3.0 Total spine -1.1
I believe that -1.1 is fine but not sure about the -3.0
I'm male 57 in UK first diagnosed PMR March 2016 and started off at 30mg Preds by GP. "Magical" response to steroids. June in hospital with suspected GCA (it may have been a flare caused by too quick a reduction), but steroids upped to 40mg.
Have tapered the reductions much more smoothly and slower and am currently on 7 mgs and doing ok most of the time.
I am scared truthfully of the Alendronic Acid. I seem to have had most of the side effects associated with the pred. As well as a reaction to the first and second eye drops for steroid induced high ocular pressure. Am worried I may be more susceptible to side effects from the Alendronic!
However have seen GP yesterday who agreed not to take the Alendronic. He said that from a previous blood test my bone health appeared to be good, and with the pred reductions going well, the low dose, and that -3 is not too bad, weight bearing exercise as best you can, eat well, there’s no reason why the T scores should get worse and may even show small improvement over time.
Next appt with Rheumy is next week.
Sorry to have gone on so long, but any thoughts much appreciated.
Chris
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However, I did need it, long story won't bore you, and took it for 4 years with no adverse effects.
Once I got down to very low doses of Pred, discussed with GP, and we agreed that as I had taken AA when I was on high doses of Pred and for 4 years it had done it's job, and as I was nearing the end of my journey, he didn't have a problem with me coming off. I remained on Vit D and calcium though, and am still on them even though off Pred.
There are many negative side effects to any drug, as well as good, and it's a balancing act. If you need to be on it, then you take the rough with the smooth, but if you don't need it then why take it?
At the end of the day, you can take all the advice you can, but it your decision.
Thanks for your help. That was my understanding about the T score.
I have phoned the NOS helpline who understandably did not want to tell me what to do, apart from following the Consultants advice. And commented that some 75% of people taking AA, do well on them. The same as you said re the T scores that -3.0 is well into the osteoporosis range.
Sorry no, I did not mean to give the impression that the person I spoke to was not helpful.
We spoke for some time and she explained that although the T score is well into the Osteoporosis range, she was reassuring and positive in the outlook, and advised me to ask about my general bone health, and helped re exercise and diet advice.
I have taken Alendronic Acid for 2 1/2 years and, because I find it a nuisance to take, I asked my rheumy at my recent appointment if I could come off it. She pointed to a notice above her desk to the effect that all patients on steroids must take Alendronic Acid.
I wonder what side effects fellow patients have suffered? How do you know which drug has caused them?
There are 2 ladies on the forum with bilateral atypical femoral fractures, that is almost certainly AA, it is a recognised adverse effect and the main reason AA shouldn't be taken for more than 4 or 5 years without a significant holiday. There have also been people with significant dental problems, their jaws not healing well after dental work, and there are dentists who refuse to do dental work on patients who have been on AA. One lady was asked by an orthopaedic surgeon why she was on AA - and he snorted in response to her reply that her rheumy insisted she MUST have it because she was taking pred and she would develop osteoporosis.
Then there are the oesophageal problems - and there are doctors who have insisted on patients taking AA even though the patient already suffered from one of the contraindications.
It isn't 100% certain that being on pred will induce osteoporosis. The BSR recommendations are that a dexascan should be done and appropriate bone protection used in line with the result. A I did - and my bone density has barely changed in 7 years on pred plus calcium and vit D supplements. There are a few ladies who didn't even take them - and their bone density also didn't change in the 5 years they were on pred.
I don't mind the idea of taking a medication for an existing or developing bone density problem - although there is little evidence that increased bone density prevents you having a fracture. People with normal bone density often have fractures, people with low bone density often don't. But someone with normal bone density and no other risk factors besides pred doesn't always need it. Longterm treatment with omeprazole is just as likely, possibly more likely to lead to low bone density - but they don't insist on patients taking AA along with that.
Hi PMRpro, I know you don't take AA and never have done and you list a few reasons why in your post. I take it, every sunday morning, sit upright for half hour whilst reading the papers. Although I don't appear to have side effects fro m taking it, a friend has now told me her mother whilst suffering PMR and taking AA ended up with Barrets Oesophagus. Could AA be the reason for this ? This poor lady has since died from cancer of the oesophagus., I am sincerely worried !! Any comments from you would be helpful in my decision to stay on it or not, or any comments from others as well. A very concerned Mazz.
There were cases where patients developed oesophageal problems - but the manufacturers claimed it was because they weren't taking it properly. Anyone who cannot swallow without problems or who can't manage to stay upright for the 1/2 hour shouldn't be put on oral AA in the first place - nor anyone with a gastric reflux history. If any of that applied - yes, the AA could have led to the Barret's oesphagus - and it is a direct contraindication for being given AA. Barret's is a precursor to oesophageal cancer.
As we've discussed in a couple of threads recently - it isn't an innocent drug you can take forever with no problems. And after 5 years max you should have a holiday from it for various reasons. According to some sources - that may be reduced to 3 years, some say even less.
PMRpro, I'd like to just emphasize your mention of "appropriate bone protection". It's unfortunate that for those of us who are barely borderline or even somewhat worse with our bone density results "appropriate" doesn't seem to include advice about diet and exercise. That should be the first line for most people. When will the doctors ever learn?
That’s interesting, goes to show how everyone responds differently to various meds. You’re right, no mention was made to me to take AA when put on Omeprazole in the mid ‘90s, so I’vd been on it for almost 30 ys. Initially at 20 mg 2x/d and after about 12 year 40 mg 2x/d. I was diagnosed with a large sliding hiatal hernia and GERD. Strong recommendation not to get surgery for the hernia.
I’ve always tolerated well anything I’ve ever been given. No allergic reactions and any side effects observed (Pred was the first substance I ever took where I had any observable side effects) were mild.🤷🏼♂️ Inherently lucky I guess. My parents were not so lucky. But my mom is still alive and living in the Rancher. She’ll be celebrating ‘90 years 2 weeks from now.
I wonder if that's the same rheumy I've just seen. Who rather horrified me by saying all women ..... all...... over the age of 70yrs should take alendronic acid.
Alendronic Acid, that's a tricky one. I have been taking it for the whole time I have been on Pred, that's just over two years now......with no side effects. My rheumy told me I really needed to take it as I have other problems going on...re osteoarthritis of the hip. Apart from the fact a full glass of water drunk quickly makes me feel sick (hate water at best of times) I can manage the once a week tablet (Just !) My main concern taking this tablet was dental concerns, but my lovely dentist is keeping a good eye on things and is well aware of dental probs with this tablet. She says if I did not really need to take it, she would advise me not to as it does come with potential side effects. Have a chat with your Rheumy next week, it may be that you don't really need to take it. Good Luck......Mazz
One of the things it says on the data sheet is that scrupulous dental hygiene is essential while taking AA. Almost never mentioned by the doctors who dish it out!
I did not take AA although pressured to by my doctor. I used purely natural means (notably exercise but also supplements and diet) and improved my score from -2 to -1.6 in one year, confirmed by DXA scans on same machine. I submit that natural means are at least as effective as the drugs, with the only side effect being improved general health, and should be the first choice. There may be a case for the drugs for people who are in dire straits. -3 and no fractures is not dire straits. You have time to turn things around without use of drugs.
I was counselled by my GP last week that I really should take the Risedronate (similar to AA) that he had prescribed, but I'd not taken. His argument is that while I'm on steroids, my bones can only get worse. On the DEXA scan a month ago my neck of femur is -3, but no fractures (yet!). I left agreeing to take the drug, but decided that I'll stop it when I come off pred - whenever that is. I'm on 7mg now, having started on 15mg in May 2016. I'll never know what my bone density was at diagnosis of PMR as the first GP didn't mention it, nor vitamin D or calcium - I dealt with that myself, but I'm going to start a new post about Vitamin D just now.
My question, HeronNS, is how much exercise did/do you do each day that led to the improvement in your score? I started to walk 30 minutes each day after I got the results of my DEXA scan, but the GP said that wasn't going to do the job!
I should have added that for over half the year between the two DXA scans (my first was about three months after starting pred) I was over 5 mg pred, and even below that level pred is considered to have an effect on the bones. I'm pretty sure pred did affect me as very early on I noticed my teeth seemed to be moving (told this was just often something which happened with age) and developed very sensitive teeth. After starting the supplementation and modifying my exercise, as well as, of course, very slowly tapering pred, these effects have virtually vanished.
My exercise includes trying to get in 10,000 steps a day (includes just being alive which I think adds up to about 3,000 of those steps) tai chi, Nordic walking, and continuation of longstanding physio and yoga. I also bought a weighted walking vest (Hypervest brand) and wear this from time to time, gradually increasing the weights.
A bones clinic at our local hospital included a good presentation from a physiotherapist who showed us various techniques to protect the spine.
Nutrients to be aware of include but are not restricted to D3, K2 (not K1 which is easily got from our diet, K2 usually has to be supplemented) and magnesium. I also try to eat a very healthy diet, low in carbs, especially refined wheat and sugar, and high in protein, vegetables and fermented foods.
Additionally I should tell you that my inspiration was a friend a year or two older than me who a few years ago had been diagnosed with osteoporosis (my level was "only" osteopenia or low bone mass). She opted for purely natural treatment, including doing parkour which is far beyond me, credits Nordic walking for being the most helpful of her exercises, and improved to "low bone mass" and continues to improve to this very day. Around the same time another friend a little older still also tried to go natural but slacked off, so an initial improvement disappeared. So whatever we do it's a lifetime commitment.
Many thanks for your input and advice. Not sure I'm up to parkour too! But I take your point about exercise and I need to step up mine. I've only recently learnt that running and hi impact is good for our bones. I have however been doing better on the healthy eating front, as you said low carbs esp refined products and refined sugars, and plenty of green veg.
Can I ask, do you have advice on how much vitamin D to take as a supplement? Opinions seem to vary but from my own research 2000iu per day would seem about right.
Just want to say that sensitive teeth can be PMR - I had problems long before I went onto pred. Sensodyne toothpaste did the job - other pastes for sensitive teeth did not but i'm sure everyone is different.
I've had somewhat sensitive teeth for a while, but for those few months I even had times when I was out and about and felt compelled to look for a place that sold the sensitive toothpaste - my preferred brand Colgate - because my teeth were hurting so much, that kind of thing. And they were definitely becoming crooked. Since my new regimen to improve bone health my teeth have become less sensitive than they were for years, and the crooked teeth have become no worse, I no longer feel that they are "moving". So maybe PMR had a minor effect, but I really am placing the blame for this episode squarely on pred!
It could have been PMR itself or Risedronate, r Alendronic Acid, but I think it was the latter 2. Prednisolone meant I could walk okay, both Rosedronate and Alendronic Acid (I was on Risedronate first, then Alendronic Acid), both of them caused severe joint pains. I stopped the former after 6 weeks, and the latter after 3. I'm off all steroids now. It took 3 years and 7 months to get down to 1mg every 6 days, at which point I decided to stop. It may be age (72) or my exceedingly long legs (37" inside leg) or my height (79" or 2 metres) which have caused me to lose power in my leg muscles, requiring me to press down to lever myself upright. I'm sure AA didn't help.
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- because my teeth were hurting so much, that kind of thing. And they were definitely becoming crooked. Since my new regimen to improve bone health my teeth have become less sensitive than they were for years, and the crooked teeth have become no worse, I no longer feel that they are "moving". So maybe PMR had a minor effect, but I really am placing the blame for this episode squarely on pred!
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