Hi, I've been taking alendronic acid since end oct/Nov 16 can I just stop taking it. I think it's making me feel far worse. I have TA/GCA Nov16. Rhumy has me on rapid decrease prednisolone (started on 40) now on 12.5 2weeks then drop to 10for 2weeks then 7.5. To be honest I feel like shit. My scalp is so sore. I can hardly walk without my rollator or 2crutches. My hips/lower spine are so weak and pain it's feels like I'm going to collapse in a heap. Rang GP this AM she said go up to 15and see how next few days go.
I was diagnosed years ago with CFS and fibromyalgia so I'm used to the fatigue, it's all the rest I can't cope with. I'm due to take the acid on Thursday. Thanks
Written by
Mar-jay
To view profiles and participate in discussions please or .
Sorry to hear you are feeling so bad. If it was me I would stop the Aledronic acid, and take 17.5 mg pred for 5 days, and if you feel much better, then maybe 15 mg. The recommendation is usually to go up 5 mg from your current dose if you flare / hurt a lot. You have been on very rapid decrease. It seems to hard for you ( and for most people ). You need to feel better, you have enough on your plate already. Best wishes.
For GCA that seems like an awfully rapid taper, especially as you appear to still have some of the symptoms of GCA - they should be controlled by your pred dose. Have they been monitoring your inflammation markers? Hope you will get some good advice from the experts when the UK and Europe wake up. I agree you can just stop taking the AA, it's not like an antibiotic where you have to take a definite amount. Were you given a DXA scan before this med was prescribed?
The Alendronic Acid made me feel rough for a day and so after a Dexa scan which showed I do need something I now have 6 monthly injections which are fine. However you sound as though you need more Pred , it seems an I believe ably fast taper.
You can stop taking AA from one day (or rather week) to the next. That isn't a problem at all
However - if you have a diagnosis of GCA what on earth is your rheumatologist playing at? To start a GCA patient on 40mg is at the low end anyway - but to have reduced you well below 20mg in 5 months is appalling practice. There is a research study that showed there is still evidence of inflammation present after 6 months of treatment on high dose steroids (above 20mg) in both GCA and other large vessel vasculitides.
I think you need to see your GP and discuss this with them. Perhaps take a copy of this with you:
Thanks for such swift reply. My blood results are not very high. The hospital said I had TA. 3 doctors. This dr says I don't have the "right" kind of headache, bloods not high, and biopsy negative (3/4) weeks after starting pred. I have all symptoms including vision problems. As soon (well)within 24/48 hrs all head pain tongue pain etc , gone. I couldn't believe how great it was. I rang my go yesterday and went back to 15 felt a bit better today. Head still a bit sensitive but not as bad. Will contact them in a few days if this continues to up a bit more. I feel I have TA, just this 1 dr seems very blasé about it. I asked how many patients rhumy had withGCA/TA and she said lots. Much more than you think. I got the impression that it's very common.
I was taking turmeric for at least 2yrs before this because of CFS/fibro. Had to get new glasses 2weeks ago , only had new ones last year. Thanks
I wonder what the "right sort of headache" is. What a stupid comment!
She has loads of GCA patients does she? I'd call her on that one since GCA is NOT common over the entire population. It IS the most common systemic vasculitis in adults - but that isn't the same.
This paper ncbi.nlm.nih.gov/pubmed/251... describes GCA as "relatively uncommon" and we do know that many GP practices have never seen a case or if they have have just one or two. It is quite a readable paper if you can be bothered.
I also think it is pretty unprofessional for a doctor who DIDN'T see you at the time to disagree with 3 doctors who did. Especially when the symptoms disappeared so promptly with pred. Out of interest, did any of the "fibro" pain disappear too?
Yes, fibro pain, in fact I would say all my pains went away. My knee is just starting to twinge. I think my gp is more for a slower reduction. The blasé dr is my rhumy one. I don't go back until June.
Re my headache, I had the sensitive scalp all last summer, then every now and again I would get a very severe pain with(I believe) loss of vision, well my eyes closed It only lasted about a minute or two, mainly on left side of my head. Sore tongue and sometimes jaw. My BP was erratic and going a bit high for me I take ramipril 5mg. In January I took all my glasses to be adjusted because they were hurting my temples.
Yup - and your "fibromyalgia" was a classical lazy doctor misdiagnosis of polymyalgia if it all went away with pred. Fibro does NOT respond to pred. It isn't an inflammatory disease. As for the markers - you would EXPECT the markers to be low when on pred and about 1 in 5 patients never have raised markers or markers that are slightly raised for them but within the "normal range" so it isn't noted (who ever had their ESR checked before PMR?). And the TAB is only positive in less than half of patients - for all sorts of reasons. It is 100% certainty when it is positive. If it is negative, in the presence of appropriate symptoms (as you had) and response to pred, you cannot take the risk it isn't GCA. You might end up with a blind patient if you do.
I think you need a long discussion with your GP - and possibly try to find another rheumy if you must have one. Who were the 3 doctors who said it IS GCA?
Not surprised! Why didn't the A&E dr call in a rheumy to see you? They are on the end of a phone for goodness sake!
However - not sure she knows what she is doing in that ?GCA is fair enough, she doesn't have confirmation. She was apparently convinced enough before - so why is she using a silly speed reduction?
I went to a @ e in st/king George's in Essex it was in the middle of the night. My own gp is in north London, and my local hospital is in Highgate. Had a real problem getting to see rhumy nearly 2.5 weeks or maybe 3. They kept putting me back to my gp for referral. I sat with gp as he called them and they still said you can have appt in few months(after Xmas). Back to gp again and they spoke to head of rhumy? And got appt then biopsy. Even though I 1st presented 7th oct it took constant harassment by myself and gp to get seen before Xmas.
Sorry forgot, a @ e were so busy I was seen by gp in the hospital like out of hrs I think.
Can I ask a question about this terrible weakness I feel. It has stopped me in my tracks. Before this I was in pain, some days were better than others but I kept going. I did rest each day and tried to get out for my walk. Even shopping gave me a thrill. Now I can only go food shopping using a mobility scooter or get someone to do it for me. As for clothes or pressies for anyone forget it. I get such a feeling of weakness I have to sit down or lie down. I feel like a puppet and someone cuts my strings and I fall in on myself. This has been the most debilitating for me. I don't even want to go out anymore. Any info/advice as to how to cope and how long it might last for. Thanks again for the replies.
Well I'm no expert, but it sounds to me like side effects of Prednisolone. It has this effect on me too.
I believe it should get less as the Prednisolone dose reduces. I have noticed less weakness and wobbliness as the dose comes down, but think it takes quite a while to get to a stage of being able to do much. Probably varies from person to person.
Haven't been out for anything non-essential for ages. When it hits, all you can do is lie down. I cope by looking forward to getting out as a treat in store - maybe next month . . . or the month after . . . .
Can I ask a question about this terrible weakness I feel. It has stopped me in my tracks. Before this I was in pain, some days were better than others but I kept going. I did rest each day and tried to get out for my walk. Even shopping gave me a thrill. Now I can only go food shopping using a mobility scooter or get someone to do it for me. As for clothes or pressies for anyone forget it. I get such a feeling of weakness I have to sit down or lie down. I feel like a puppet and someone cuts my strings and I fall in on myself. This has been the most debilitating for me. I don't even want to go out anymore. Any info/advice as to how to cope and how long it might last for. Thanks again for the replies.
Lots of mixed messages about AA. I was on it for +2 years (GCA) but stopped last month. DEXA scan due soon. I saw my dentist today and he is aware off AA bad press. But his advice is that taking AA intravenously is the danger area, pill form no problem. So now I'm confused.
Your tapering does seem sharp. Be careful. I got down to 12.5, but then I got an infection of the lining of my nose (looked like Rudolph....), so GP said go up to 20mgs, which I did as I was in so much pain. With slow tapering that put me back a year. Like miss-philosopher view that increase should be 5mgs at a time. But when you are in pain and due to go on holiday the following day, I'd have swallowed anything!!
Mar-jay, I stopped the AA after a few times of feeling awful and nauseous. Didn't tell my Dr. Years later, my Spinal consultant said I should try Ibandronic Acid Mylan, once a MONTH. Works well for me.
PMRpro is of the same opinion as me. I have been with my Neuro, for GCA, for going on 12 years now, and he still doesn't have any GCA patients, and a handful of PMR. I am seeing him this Thursday, and will ask him, if he has any GCA patients.
The dental surgeon I saw at Guys Hospital also said that intravenous AA is the big problem. Because I guess it is given at a much higher dose. I had my tooth out under a General Anaesthetic and have been fine apart from an allergic reaction to I know not what that gave me beetroot face, neck, and chest.
Hi Mar-Jay, I've just had an appt with my lovely new GP who used to work in the Rheumy dept at our local hospital. I have been on Alendronic acid for about 8 years, she told me I do not have to put up with taking this any more, I'm to ask my rheumy consultant when I see her next if she can pt me on Zoledronate or Denosumab, I think thats how you spell them. One is an injection given once every 3 years, the other is an injection given every 3 months at the surgery. They do have to be prescribed from the hospital. I trust my new GP's judgement, so this is what I will ask about at my next hospital appt. It just may help you...
Hope you feel better soon.
GP also said I MUST take the Adcal D3, which I must admit I do forget!
Been reading through the comments on AA, wondering if anyone knows anything about long term side effects of the Zolendronate infusion. I've had two done and refused last years as my DEXa scan showed no osteoporosis and no change from the one which had been done three years previous. My then rheumy told me that one of the consultants, who specialises in GCA, had said that two infusion is plenty. Any experiences from you lovely people would be interesting to read. Many thanks.
If you do not have osteoporosis you should not even have been offered osteoporosis medication - merely advice on nutrition, supplements and appropriate exercise to combat possible (but not inevitable) bone thinning effects of pred. Now that you've had the infusions that's all water under the bridge and my suggestion would be just to carry on life as if they hadn't happened, but make sure you care for your bones as you would care for the rest of your body, as I said, food, supplements, exercise!
Thank you Heron NS, i eat healthily, well most of the time, I cook I don't heat, exercise as much as PMR allows and drink plenty of milk. So far good. The infusions were carried out as I've had an ankle fracture, which sadly was undiagnosed, and later had to be pinned. But I am convinced it had nothing to do with osteoporosis, just a sad accident when my daughter's dog jumped down onto my ankle. Like I said my DEXA scans are normal, apart from very slight osteophonic in my left hip and nothing's changed over the years, despite masses of steroids. So I think I'm doing something right. At least I hope so.
I agree with Anhaga. If your dexascan is OK - you do not need more bisphosphonates.
Bisphosphonates are bisphosphonates and there is relatively little knowledge about the long term side effects simply because they have only been in widespread use for well under 20 years - and alendronic acid was the first. Now the chickens appear to be coming home to roost with indications that long term use of them may not be as simplistic as the manufacturers suggested in marketing (nothing new there then). Use of them over longer periods does appear to create "different" bone and after a certain point it may become MORE brittle than normal bone tissue - so increasing the risk of atypical fractures. Two years-worth is felt to be OK at the present state of knowledge - though there are a few ladies on this forum who might disagree as they have had atypical femoral fractures and required surgery to pin them. At least two have had bilateral fractures.
Thanks PMRpro, it all makes for interesting reading doesn't it. I don't know how true this is but a friend of mine, as we were talking about bisphosponates today told me the pharmaceuticals companies have big pot of "dosh" set by in case there might be folks claiming in the future because of bad side effects.
Merck recently agreed to a multi million dollar settlement of a class action lawsuit in Canada for people who have suffered ONJ and atypical femur fractures after taking fosamax and fosavance. Company says this settlement doesn't mean they admit anything.
HeronNS, tx for sharing. Do they ever admit to anything. I wonder what these companies mean when they pay out settlements but don't admit any liability. Interesting info. Just goes to prove - better informed, better decision. Thanks for this.
Good morning and tx for the link, will look at it later. Not feeling too bright at the mo so everything is in "slow mode", which I'm sure you know all about.
Had a dexa scan, results good, even factoring into the computer program about drinking and smoking, need to take AA for as long as I am on preds. However, I found out something really interesting by talking to the woman who did the dexa scan; that only 500mg of calcium can be absorbed at any given time. She advised me to break my ical-d3's in half. Half morning and the other half later on in the day. Told my gp and he's going to tell this to all the other gp's in the practice plus the patients on ical-d3.
It's annoying how little we are told about the right way to take supplements. I didn't know for the first few months starting prednisone (when bones most vulnerable) that pred and calcium shouldn't be taken together. Nor should calcium be taken at same time as iron. Prednisone stops calcium from working properly (and I read somewhere that calcium has some sort of effect on pred, but haven't been able to find the reference since) and calcium interferes with iron absorption. Only found out about the pred-calcium disagreement by following the forums! Fortunately my calcium supplement comes with proper dosing.
Yes this too makes for interesting reading. I started taking Calcium supplements, but it disagreed with me, perhaps because of what I've now been reading above. In addition, I also decided to stop taking the supplements as at that time there were report oi increseased rish of heart problems (which I'm at a higher risk because of elevated BG, GCA and diabetes) connected with taking VitD supplements. This wzs quite a while ago and I'm fine with my DEXA scan as I've mentioned above.
The BSR and BHPR Guidelines for the management of GCA (15/1/2010) clearly states for patients taking Prednisalone (which for GCA should commence at at least .75 mg/kg in uncomplicated GCA , which means no tongue claudication or visual symptoms) has the following "Bone protection (weekly bisphosphonates and calcium or vitamin D supplimentation) should be co-prescribed with glucocorticosteroid therapy."
In simple terms ...Prednisalone has an effect on the osteoblasts (which are the cells which create new bone) reducing the rate at which new bone is formed. AA and other bisphosphonates reduce the effectiveness of the osteoclasts (which take away bone in this dynamic process of remodeling bone) and thereby allow the bone density to remain reasonably constant. It makes sense to take the Bisphosphonates as a preventive measure rather than to wait until loss of bone is identified.
It is now being accepted that using them as a preventative measure may NOT be as advisable as it seemed from the manufacturer's marketing. Use of bisphosphonates for more than 2 years seems to create a denser bone as measured in dexascans but it has a more brittle and fragile structure with fracture lines which can be identified with suitable imaging. Piglette has written about it a bit further down the thread.
There are at least 2 people on this forum maybe 3, who have had spontaneous femoral fractures due to AA - which the company claimed originally were a very rare occurrence. But that was on the basis of relatively small numbers and short duration during the clinical trials. The FDA has said for a long time it should not be used for more than 5 years consecutively and recently the noises are that 2 years is more advisable.
I have been on pred for a long time with little change in bone density. I have been on PMR-doses and calcium/vit D but there are others with GCA who have had the same experience - no change in bone density despite not even taking calcium and vit D in some cases.
In fact less than half of patients on pred lose bone density - and the incidence in the general population is about 50%. Nor is there any link between low bone density and fractures. You cannot say it is definitely pred - you need to monitor and monitoring is safest on patients who do NOT take bisphosphonates which may well create a false sense of security.
The article does identify microcracks but also points out that they are part of the normal physiological toughening mechanism. In my opinion there is insufficient evidence to suggest my wife ceases her bisphosphonates, as prevention is clearly better than osteoporosis. I would not want to see her taking bisphosphonates for more than two years. ( Being aware of the publicity concerning bisphosphonates I also put it to her rheumatologist and he remained of the opinion that she should continue with them)
Tonylynn I think what you are quoting is not the latest research, which came out earlier this year and has been mentioned on TV, radio and in the press in UK. PMRPro has given a link to the article in Nature.
My reading of the paper does not suggest to me that taking Bisphosphonates for a while is worse than not taking them at all when patients are taking corticosteroids. Prevention is better than waiting for a diagnosis of osteoporosis. How do you think that will be treated as and when identified?
I think I would prefer to take bisphosphonates when I know I need them, so they can do me the most good, rather than taking something that I do not need at the moment. Once I have taken them for a period and stopped I will not be able to take them again when I really need them.
I suggest you read further up the thread - if your dexascan is good it is no longer recommended to give AA. Calcium and vit D supplements are often enough and a repeat dexascan in 2 years. I have been on pred for nearly 8 years, much of it at above 10mg. My bone density has barely changed.
It seems that AA can damage bones as well. Imperial College have been involved in research recently with Oxford University that shows long term AA stops bone repairing itself which it normally does and so can make the bones worse. Apparently microcracks are caused with the AA. There has been a lot in the media recently about these new findings. I assume that doctors will slowly hear about it and stop giving AA to those with a good bone density. AA can help people with osteoporosis, but they must not be taken for too long a time. AA can cause necrosis of the jaw and dentists tend to be wary of people taking it.
I don't know why they'd have to do research to show that bisphosphonates stop bone from repairing itself. That's the exact mechanism by which they work - they suppress the action of osteoclasts, therefore new bone is laid down on an increasingly aging matrix. Apparently denosumab is even worse, poisoning the osteoclasts, not just inhibiting them. Possibly a more effective mechanism for improving bone health would be to encourage osteoblasts, without damaging the osteoclasts. But I'd be afraid of that too, as over encouraging cell growth seems like a recipe for disaster of another kind.
AA does NOT cause necrosis of the jaw, nor does any other Bisphosphonate. Where people taking bisphosphonates orally require extractions or other oral surgery there is a very very slight risk of complications ... osteonecrosis. The advice is still that dentists take teeth out in the usual way but advise patients of the risk and if root treatment is an opten, then the patient may elect to have this as the risk is even further reduced. IV bisphosphonates carrty a higher risk and dentists would ususlly refer to an oral surgery department.
Anyone taking bisphosphonates should tell their dentist.
Tonylynn, You should tell a friend of mine whose brother had necrosis of the jaw due to AA. They were talking about it last week and the results seemed horrific.
Better not to scare people without knowing the facts. I cannot see that ostoenecrosis of the jaw is likely to occur without a precipitating factor such as a tooth extraction, and even then extremely unlikely if on oral bisphosphonates.
"A prospective, population based study by Mavrokokki et al.. estimated an incidence of osteonecrosis of the jaw of 1.15% for intravenous bisphosphonates and 0.04% for oral bisphosphonates. Most cases (73%) were precipitated by dental extractions. In contrast, safety studies sponsored by the manufacturer reported bisphosphonate-associated osteonecrosis of the jaw rates that were much lower.
Although the majority of cases of ONJ have occurred in cancer patients receiving high dose intravenous bisphosphonates, almost 800 cases have been reported in oral bisphosphonate users for osteoporosis or Pagets disease. In terms of severity most cases of ONJ in oral bisphosphonate users are stage 1–2 and tend to progress to resolution with conservative measures such as oral chlorhexidine rinses.
Owing to prolonged embedding of bisphosphonate drugs in the bone tissues, the risk for BRONJ is high even after stopping the administration of the medication for several years."
Something precipitated the other 27% of ONJ that were not triggered by dental procedures. Or they were spontaneous. But there are other causes of ONJ as described here: boneporosis.com/onj.html
which mentions gum disease.
Pred itself is a risk factor for osteonecrosis. It is difficult to say what the effect of combining long term pred and longterm bisphosphonates will be. To be honest - ONJ is just one aspect and perhaps not the more important one - pred does cause osteonecrosis in the femur and bisphosphonates also are known to lead to atypical femoral fractures and there are people on this forum who have suffered them.
Yes, most cases happen after high dose IV use in cancer - but those patients are rarely on high doses for years. Since they remain in the body indefinitely, use of lower dose oral bisphosphonates over years may well be creating the same scenario - just it takes longer. In the words of our childhood: little drops of water, little grains of sand, make a mighty ocean and a pleasant land. Even a dripping tap will fill a bucket.
So - since we have no choice about the pred part of managing PMR and GCA at present, I would prefer to avoid increasing the risk of something if I can, I have already had one lengthy spell on crutches because I was given an antibiotic that is contraindicated alongside corticosteroids. The GP said "I've never seen that before..."
Given the questions that MUST be answered about long term use of bisphosphonates, I think reducing their mass use "just in case" is perfectly justified. The bisphoshonates are not essential so they can be avoided as long as possible. By all means consider using them when it has been demonstrated by consecutive dexascans that your bone density is falling/has fallen to low levels. But only then.
We all agree prevention is best. Most of us looked after ourselves but were never educated in the best way to keep our bones strong. But it is possible to improve bone density without drugs, and certainly those with only a diagnosis of low bone mass (osteopenia) or who are borderline should try the natural way first.
Yes, prevention is best - and if you read what I wrote you will see that I have no cavils about AA being used in patients with proven low bone density. That is different.
My t-scores were -1.3 at worst 8 years ago when I started on pred. I did not take AA because the reservations were alreay in the public domain and my GP agreed with me that maybe it does have feet of clay. I have religiously taken calcium and vit D since then and done what exercise I can, all in the form of walking. A couple of months ago my hip t-score had fallen to -1.5.
What I and others are saying is that, given the more recent findings, which have been published by independent researchers, not as figures from the clinical trials, it should be reserved for patients whose dexascans are showing problems. It is known and has been shown that figures from clinical trials were frequently massaged in the 1980s and '90s to make them look better and to increase sales and therefore profits. Statins are just one example. AA may be another.
According to the dexascans the bones become more dense - because of the presence of the drug in the bones. That does NOT mean that the bone is stronger. It just means it is denser. Not the same thing at all. And what appears to be happening is that microfractures are. potentially, weakening the bone, it is not as flexible. But once the AA is in the bone - dexascans are no longer true reflections of the state of the bone. So the dexascan becomes of reduced use for other purposes - because extra-dense bone is a sign of other pathologies. I know a couple of patients on the forums who have been recalled for tests because they had such HIGH bone density in their late 70s and 80s. IF a patient has had a dexascan and good density found it is bad enough handing out an unnecessary drug - where someone didn't have the scan done and was given AA on the grounds "you are old so you MUST have osteoporosis" you are doing them a disservice.
The researchers actually stated that having taken AA a Dexascan was not the right way of checking the bones. I suppose when clinical trials were carried out Merck did not actually know the long term affects. I believe the current reseachers were using discarded hip bones from people who had had hip replacements and checking those who has taken bisphophonates and those who had not.
Doctors just assumed that Fosamax would be fine "because we have been using it for years" - they had been using a different substance in Paget's Disease. Which is relatively rare.
As usual the nasties only crawl out of the woodwork after a few years of very widespread use. Happens all the time as you know.
Plus, of course, they'd marketed it as a fool-proof way of never having a hip fracture darken the drs doors again. Except...
The rate of loss of bone density is most rapid in the first few months of taking prednisalone. Up to 10% is not uncommon. Surely it is better to prevent this loss if it can be done through the use of bisphosphonates. I appreciate that there is some value in dexascans for some groups of patients. The advice for older patients, especially females, is that the scan is not necessary and bisphosphonates are. Take the advice of your healthcare professional, or get a second opinion (which does mean pmrgcauk). And, I ask again, will someone quote a reputable scientific peer reviewed paper that shows how to return the bone to normal density while still taking steroids.
I'm not discussing this any further. Except to say - medical doctors do not hold some source of knowledge we mere mortals can't read. I too can read and understand research papers - as can the many of the others on the forum who also went to university and studied medical science.
I will also add that peer review may not be all it is cracked up to be - the whole measles fiasco was based on a peer-reviewed publication.
They don't appear to agree and state that most experts don't agree with Merck's claimed incidence. Yes - the received information is that risk for osteonecrosis is higher in patients on high doses but there has been at least one person on the forums I frequent who has had considerable bone loss in the jaw which the dentists are persuaded is due to having been on oral AA.
But in addition, there are at least 3 people with atypical femoral fractures, which in one case will not heal. Her consultant is also confident it is the AA.
Our point is that there are serious questions to be resolved that differ markedly from the manufacturer's claims. In the meantime - we shouldn't be taking them "just in case". Even I would suggest someone with osteoporosis should consider them.
I just talk to my GP on the phone nowadays, I go to the surgery for blood tests. I had a real fight with one GP about AA, when I thought I had won he started pushing it again the next time I saw him. His reason for me taking it was that I had been on steroids for a long time, although my Dexascan was brilliant.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Alendronic Acid
Alendronic Acid and Methotrexate
Alendronic Acid
Alendronic acid
Alendronic acid
