Has any one stopped taking Alendronic Acid? I was diagnosed with PMR/GCA over 2 months ago I was put on Alendronic Acid - being 56 and menopausal. I took the first four weekly ones, felt really poorly each time, lost my second box, and requested a repeat prescription, missed a couple of weeks then started again this week. I have felt really poorly again; aching; tired; dizzy etc..... really am not comfortable taking this. I am taking calcium and Vit D. I have not had any suggestion of a scan which I see is mentioned on this forum....
I am trying to taper my preds down, and was due to make a reduction in a week or so, but am now unsure if my increased aching in my shoulders and neck is the PMR or the AA? I have been on 20mgs now for 3 weeks and am due to reduce to 17.5 in another week or two.
Any thoughts would be much appreciated.
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lesley2015
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I must admit there is no way I would take Alendronic Acid until it was proved to me I needed it. I would ask for a Dexascan first. In my opinion it is crazy taking a drug you can only take for five years when you may not need it and then when you do actually need it you can't take it. Contact your doctor and tell them you are getting very bad side effects and ask for a scan. Also personally I don't reduce unless I feel good and ready to reduce.
Yes I took Alendronic acid for 2 yrs. for the first 4-6 weeks I found the same with dizziness and lightheadedness. I found if I ate a substantial breakfast the bad effects were less.
Over the 2 yrs I have had stress fractures of the fibula which are now being attributed to the AA so my rheumy has stopped them, I did however organise a private dexa scan which showed I had moderate osteopenia and they recommended on that basis.
It is a very individual choice, but I hope the bad effects settle soon.
My doctor gave me the choice , I have a dexa scan on Wednesday and am hoping my bone density is still good, as I have heard some horror story's about AA . The thought of feeling ill and dizzy all the time again depresses me . Good luck
I only took it 6weeks too many problems also my dentist wasn't happy she says she won't be able to treat any extractions or things like that ,and not only while I am taking them but for years after. Possibly you don't need it ask for a dexa scan. Your bones may be ok.
I wasn't offered a dexa scan for over a year after being diagnosed but I was put on alendronic acid plus calcium and vit D tablets immediately. The GP told me I needed to take it. I didn't argue. About 18 months later when I saw a consultant for the first time I was offered a dexa scan. It showed I had borderline osteoporosis so I was told I should continue to take AA. By this time I had joined PMRGCAuk. I heard and read a bit more about AA and had a number of flare ups while trying to reduce pred. I decided to stop taking the AA but my consultant was concerned. He offered me an annual infusion of zolendronic acid. Up to then I had never been told there were alternatives. Before I could have the infusion I had to have another blood test. The result showed I was seriously low in vit D. The consultant called me as he was so concerned and put me on a booster dose for 7 weeks before I had the infusion.
I assume it is the combination of the zolendronic infusion and the extra vitamin D that has changed completely how I am. I have been able to reduce to 5mg and overall feel so much better than before.
I also took 4 - they didn't make me feel ill but I disliked it. I did my homework about it and need for it and went back to discuss it with a different GP - who actually agreed with me saying "It is beginning to emerge that maybe it isn't the benign miracle drug they claimed it was so let's see what the dexascan says first". I had the first dexascan after about 3 months on 15mg pred. Which is when it should be done - most bone density loss is felt to be in the first 3 months when the pred doses are at their highest. The results were indicating slight osteopenia but not normally seen as a level requiring medication other than calcium and vit D supplements which I have taken every day since.
Three and a half years later, after being on pred at 10mg or above for much of that time, I had a second dexascan. The two can't be compared directly because they were done on different machines - but the figures were almost exactly the same as in the first one. Nothing to suggest to my doctors here in Italy where I live that I need anything more than the calcium and vit D and basically showing there had been little or no change in bone density despite nearly 4 years of pred.
So I would advise insisting on a dexascan first - and then discuss if there is any need for alendronic acid on the basis of the results - and YOU need to know the figures too, not just be told "osteopenia, you need AA". There is a wide range that is classified as osteopenia, at one end it is almost normal, at the other end, yes, you probably DO need something. A private on can be got for somewhere between £50 and £70 so don't let them tell you it is far too expensive.
If you do end up having to take it then make sure they have checked both your calcium and vit D levels - and put them right if they aren't. If either of them are low then the AA will do nothing. Vit D needs to be in the region of at least 50 ng/ml and preferably above 75 ng/ml. It is unusual for calcium to be low - but it does happen.
Lesley, by stopping the AA for a couple of weeks and finding that you felt better only for the side effects to return again on re-starting it, I would feel would be proof enough for me that it was the AA rather than the steroid tapering that was the culprit.
Do demand a DEXA scan - no sign of present bone thinning, no bisphosphonates!
I was never prescribed bone protection such as Alendronic Acid in spite of a steroid starting dose of 40mgs (PMR/GCA). Due to a misunderstanding between my GP and my rheumy I wasn't prescribed the recommended calcium plus Vit D supplement either. I was aware of the possible steroid side effect of thinning bones, so requested a DEXA scan in order to have a baseline reading at the outset. This was refused by both my GP and rheumy because apparently at the time "there was a year's waiting list for DEXAs"! I arranged a private DEXA and my bones were found to be in the normal range for my age. During the next 5-6 years on steroids, there was only the tiniest reduction, just into the osteopenia range, but not requiring treatment. A repeat DEXA some time after coming off steroids has actually shown an improvement in bone density.
So do ask for the DEXA, meanwhile including as many calcium-rich foods in your diet as possible, and walking each day as far as your pain allows for the best weight-bearing exercise.
I have been on Pred. at 11mgs. and above for 3 years. I was put on AA by 2 Rheumys who gave me horror stories of crumbling spine etc. Both also said that DEXA scans were not accurate enough and the steroids always take bone. My GP arranged a DEXA scan about a year after I started taking the Pred., which showed my bones above average for my age (54) at which point I stopped the AA. I have just had my second scan, 2 years later, with the same radiologist on the same machine and she said it hadn't changed and if anything was slightly better, which made me punch the air- at last some good news!!
The learning here, as always is, do your own research and make your own decision. I didn't feel sick taking it but the second time I started AA I did get pain in my hip which stopped as soon as I stopped the AA- enough of a scare for me not to be keen on taking it anymore.
Yes they made feel awful as well I stopped taking them till the gps at the surgery read me the riot act. Still refused to take them (I was ill for 3 days out of 7 every week) eventually they let me have Ibondronic acid Its not a deal better but you only take it once a month so at least you get some respite inbetween. I am slowly reducing pred should be off them altogether by next Spring so hopefully then I can throw the lot in the bin.
Thank you all for your comments - it has made me feel better about my decision - I will ask for a dexascan (pay if necessary), but not continue with the AA. As I am sure, all of us on this journey agree. we hate the amount of medication we take and the damage and changes it does to our bodies (in-spite of the positive benefits), so to take something that is possibly unnecessary and makes us feel so unwell seems absolutely ridiculous. I did mention it to my consultant , but he wasn't interested - so I shall just tell him I have stopped it.
Than you all again - it really reassuring to have this group where we can share our fears, experiences and thoughts.
Thank you for the above replies which have strengthened my resolve to ask for a dexa scan. Until I took steroids intermittently my bone density was above average for my age (I had access to low cost dexa scans as part of a research project). So I concluded that the stereoids were the culprit as I had re-doubled my exercise following a Parkinsons diagnosis. I am now down to 5 mg pred.daily manintenance dose for the time being but when I said to my named (not preferred ) GP I wanted to come off the Ibandronic acid he said "guidelines say 5 years and then stop", not even noticing that I have changed from Alendronic acid to Ibandronic, and blissfully unaware of the history leading up to my taking it. Does anyone know whether alendronic is " worse" than ibandronic or much the same.?
I had to cease taking AA after six of the weekly doses. Woke up with numb lips and wheezing. GP prescribed penicillin just in case it was an infection. Disaster. I was allergic ( had never had it before). Although I was on 15 mgs. of Pred at the time I was fine taking just the usual calcium and Vit.D supplement ( Calceos ) Finally got to the end of PMR after more than five years and along the way had hugely successful hip replacement after which I was told by surgeon that I had " amazing" bone density for someone my age so presumably the AA was unnecessary.
As far as I remember I did not have any other symptoms while taking AA. Pain was well under control so I must suppose the reaction was allergic. What I wonder is why this why AA was prescribed in the first place.
"What I wonder is why this why AA was prescribed in the first place."
Because the company that developed Fosamax did a superb marketing campaign which included providing many doctors with the small devices that are claimed to measure bone density in the heel and allowing the doctors to see how their patients didn't develop osteoporosis. The trouble is - these devices are nothing like as accurate as a dexascan and anyway - the heel doesn't develop osteoporosis like hips and spines. If they did they'd do the measurements there! They also claimed it was a drug that had few or no side effects and was the miracle answer to prevent elderly ladies falling over, breaking a hip and being crippled for the rest of their life or, even worse, dying as a result.
A generation of doctors grew up believing the story - and what they learn at one stage of their training remains fixed. Slowly it is emerging that used for more than 5 years the rate of side effects - some of them very nasty - increases. Clinical trials don't usually last that long so it is only when any drug is released into the general population that the true rate of even the short term problems can be identified. That is the reason for the "yellow card" scheme which reports adverse effects - but it is only as accurate as the responses from doctors, pharmacists and patients when someone suffers one of these so-called adverse events. Many doctors will say "oh we know that's a side effect, it doesn't need to be reported". It DOES, because only then do we know the true rate of side effects - much the same as we don't know a crime rate if no-one reports theft and other crimes.
I developed an allergy to Fosamax (AA) after my first pack (14 years ago) this manifested itself as a tightness of the oesophagus and feeling as though I was being strangled. I stopped taking it then and have had 2 dexascans since, one recently which showed mild osteopenia. I was offered denusomab (prolia ) as a six monthly infusion but after consideration I declined this . I am lowering my steroid dosage and hope things will improve as I am wary of the side effects experienced by so many on this forum.
I was poorly each time I took AA and I requested a prescription change. I'm now on Risedronate which suits me well. I have not side effects that I'm aware of. I would concentrate on getting the pains under control before reducing your steroids, which means making sure that the AA is responsible for the symptoms. Once the pain is under control and your system has been settled for at least a few days then I would consider reducing. Going too quickly into reduction only causes relapse and flareups, which involves stepping backwards to regain pain control. It really isn't worth rushing it.
As I've mentioned under another post that I believe I have a bad reaction from AA. A really bad reaction - the inability to rise from sitting without appalling pains in my knees which continue to sting / smart for hours afterwards. though not when walking. The medics have agreed for me not to take AA for the next 4 weeks to see if there is any improvemnt in my mobility. I took the last weekly tablet 10 days ago, and while it's still painful to rise from sitting it's much easier to do it, and the pains don't last so long. I can't change back to Risedronate as that gave me terrible knee pains and mobility problems.
It's a pity that people don't routinely have Dexascans at a certain age, say 60, so that we could see whether prednisolone has any affect. My dexascan put me in the middle of the Osteopenia range. What I don't know is how long I've been there. It might have been at thaat level 5 years before I contracted PMR. I've had highish doses (40mg a day) for short periods in the past when I've had bad asthma, but can't see how these would have affected my bones.
If I have better mobility in 4 weeks then I'm due for injections to strengthen my bones. Of course there's no guarantee that they won't have equally bad side-effects.
I tapered successfully at 10% dose reduction every 2 to 3 weeks from 15 milligrams to approximately 7.5 milligrams.. tapering after 7.5 milligrams is somewhat trickier since everyone responds differently. I tapered approximately 0.5mg every 3 to 4 weeks... I am now at 6 Milligram... will periodically feel tired earlier in the day and somewhat perkier later in the day... tapering can be very frustrating since recurrent PMR symptoms and adrenal fatigue can overlap. If you are able.. gentle aerobic exercise four times a week is important. 30 minutes per session on a treadmill or elliptical seems to work for me.... I also do some gentle weight training to keep my muscles from reaching a catabolic state created by the steroids.
I also take herbal supplements as follows. Ashwagandha, Rhodiola rosea and curcumin. Calcium, D3, magnesium, vitamin E, and vitamin C are strongly recommended by some experts. Opinions about taking rhodiola can be conflicting since there is some evidence that rhodiola can cause the adrenal glands to release cortisol... a very confusing issue. Nevertheless I still take Rhodiola rosea since it has many benefits....
ALENDROIC Acid... bisphosphonate therapy should be based upon your bone density readout... since bisphosphonates can give you significant side effects it would be important to know whether you really need them or not.... there are many variations on bisphosphonates therapy .It's important to know whether you are osteopenic or osteoporotic... big difference since the former is more reversible than the latter. Get a bone density study. Some doctors like to put their patients on estrogen if they have had a hysterectomy. Not recommended if you still have a uterus however.
Please understand that all of the above noted considerations requires MD oversight but the MD must be sensitized to your problem....to repeat ...one size does not fit all.... good luck ....J Barie
Hi Lesley I also stopped taking the alendronic acid as I felt very much like you and was worried about the side effects. I used to wipe Sunday off the week, the day I used to take it, as I felt so bad that day and night.
I am now down to 5 mg of preds a day from 60 last December. I did really well on 20 mg then had 3 weeks of hell on 15 msg then went to 10 mgs and felt really well. This last drop is not so good again but determined to sit it out with out going back up again. The next drop will be 1 mg at a time. All I want to do is get of of all the drugs I can as the side effects seem worse than the symptoms.
At the moment I ache every where, swollen feet and ankles, that are still swollen in the mornings. headache and sensitive scalp, sore tongue, stiff shoulder and neck, hip and back and groin pain. Hair falling out in handfuls, swollen and painful eye balls, swollen face, no energy at all, not sleeping well because I hurt every where I lay.
It has been 2 and a half weeks now on 5 msg and I know others on the forum will tell me to increase the steroids, which I have no intention of doing. I just have to get off them.
My advice would be stay on the dose of steroids you are on until you feel relatively well for a week or so, suffer the side effects then drop preds to next level.
I would love to hear from some of the people out there who have recovered and come off of the preds and got their lives back.
It really interesting that so many are struggling with this Alendronic Acid, with the side effects of the steroids it is just too much, especially if I don't need it.
It sounds like you are truly suffering too, when did your hair start falling out? is that steroid related for you? My ankles swell and I am so bloated, but going to try the drop to 17.5 from Friday - just want to get off the steroids, as you say the side effects, to me, are worse that the pain of pmr/gca, I only agreed to go on them because of the risk of blindness.
DId you have a really big moon face? my face is bloated, my neck also and my abdomen is now beginning to change too ..... has this reduced at all if you suffered with this on the high dose?
Hi Lesley I was diagnosed on 19th Dec 2014 with GCA and PMR
Yes I have all the side effects you have, I was a 12/14 size and now size 20, never had a weight problem before that I couldn't manage.
I used to cycle 3/4 20 mile cycle rides and weight train 3 times a week.
plus run our own business, a boarding kennels which is 24/7 so very active.
I have fought the steroids since the beginning and only went on them because my doc said it was a really serious illness the GCA and I could go blind and it would eventually kill me.
I have had a biopsy and been told that there are signs that the GCA has bunt itself out and if I can get of the steroids without activating it again I will eventually get well.
I have refused to go back up on the steroids once I have managed to get down to a level even with people on this site telling me it is too fast, regardless of the side effects and I think I have had appx 70 out of the supposed 80. I am 61 years old and a year ago could out work any of my staff, I can barely walk 50 mtres now and use a cane to do that. My last holiday in October 2014 while I wasn't well was, Quad Biking to give you an idea of how active I was.
I do have a couple of other problems, asbestosis which is why I took up cycling, my lung function test started at 29% when I was diagnosed
and 2 years later at 85% which is better than most people my age. This year it has gone down to 60% on the steroids.
I also have cronic arthritis in both knees which the 4 and a half stone I have put on has just about finished them off, so waiting on a knee replacement.
Neither condition was a problem until the steroids in fact I am into alternative remedies so take very few drugs unless I have to
My hair started falling out about 3 months into the steroids, In fact for the first time for months I felt really well on the starting dose of 60 mgs but a month or so later the side effects kicked in and I seem to have gone up and down from there on. Yes I have the moon face and the hump on my back, customers say I don't look so swollen, although I still feel it. I can't begin to list all the side effects I have experienced.
Roid rage, hallucinations, vivid dreams and I mean vivid, where I wake up and am still in the dream. Some of them have gone and some have come back as I have reduced the preds. No one can say this condition is boring, you never know what's round the corner
I have seen a rheumy in Addenbrooks Hospital Cambridge and a specialist eye doctor as the pressure in my eyes is very high, again from the steroids, I take eye drops for that
Also Vitamin D/Calcium tabs. I have just ordered magnesium bath granualls and oil as I have been told this will help with the muscle pain from the PMR at the moment its keeping me awake at night which isn't helping.
Although I find this site very helpful with information I would also like to hear from people who have got off the preds and recovered and how they did it. It does make me feel quite depressed when I hear of people still struggling after 5/10 years
I am on a diet of protein, organic fruit and veg at the moment but still no results so my weight is still getting me down, but I will find a way
to reduce it. As far as exercise I have just bought an exercise bike
and will be using it as soon as my husband puts it together for me.
Thinking of going to the Cambridge support group meeting to see if there are any survivors there
.
I hope this information helps you and if you hear of any alternatives
let me know , but just stay strong and determined.
As soon as I get through this level, 5 mgs, I will be going down to 4 mgs
Thanks for the reply, gosh you have been through it. I am 56, I work full time and up until the last couple of years, when PRM (undiagnosed) started to take a hold, regularly cared for and exercised my horse, and all the activities that entails. I began to slow down, until the tipping point my husband and I went away for a few days, and I didn't sleep, couldn't enjoy the break because I was in too much pain. I was diagnosed a couple of months later.
Felt good for the first month on steroids, pain fee - tired and trembly but then, as you say all the symptoms kicked in. Loads, from tremors, palpations to IBS anxiety, which still working (managing a Veterinary Practice with 4 branches). I am trying to drop as fast as I can, I find it so depressing being on the steroids, almost worse than the pain. I am struggling with work and although they have said for me to work from home if I can, I really manage the whole team of 50 people and cannot do that from home. I have done a 44 + hour week this week (should b e 36), and realise, I cannot keep this pace up. So reluctantly have decided to sell our house and buy a smaller one (it will be tiny - this one is on a little 2 bed), but then be mortgage free and find a less stressful part-time job. Obviously, I may regret this if I am well in a year or two, but in the short term , don;t really have a choice. My headache is pretty constant, could be tiredness or stress, or the GCA, its hard to tell sometimes.
Exercise exhausts me, I have just dropped preds today to 17.5 mg, I have put on about 5lbs, but only very occasionally eat carbs. Loads of fruit, veg, chicken and some chocolate, I have to have something naughty!
I do have spiritual healing which helps, and also mediate, (I should do this more) it always lifts my energy and depression.
I do hope you continue to reduce your steroids, and wish healing with your lungs and joints and also every success with your knee replacement, my husband had one last year and it has changed his life.
Like you, I really don't want to be still on steroids in several years time and in this 'never never' land feeling - if you know what I mean - I want to be me again!
Having read your reply we seem to be on a parralel sort of story and working industry
I know how many hours you must work and probably the most stress full part is looking after staff. I know I have 7 and that is hard enough. My name is also Lesley
Lily Mae and Rose were my last 3 dogs.
We could have recently sold our kennels, but it made me think about what would I do.
Who would employ me, especially with this, at the moment I would en up being a recluse and I think that would be worse, besides the dogs are so therapeutic to be around I love my job. Sounds like you don't get that from your job, it sounds like its more admin based. You should ask if you could work with the dogs instead Ha Ha
I really feel for you and everyone who has this illness.
Don't worry about my other conditions they are manageable all I want is to get off the steroids.
I have just had a very bad 2 days hardly got out of bed and have had to go back to 10 mgs, as soon as I feel better I will do the drop in 1 mgs, so not giving in yet. Also dropped a few pounds in weight which is positive.
Must say I was determined to not go back up from 5 mgs, but had to give in, but this is pain from the PMR and not the GCA so at least that is positive. I have not been able to lift my left arm and the whole of my left side has hurt everywhere. Even been taking Co-Codemol in stead of Paracetamol which were not touching it. Slept the whole day away as they knock me out. Only got up at 6 pm
Anyway I am in Cambridge, don't know where you live but when you sell up and are looking for a part time job let me know if you are any where close.
Its strange isn't it - the similarities between us. I think stress is what finally triggered this to the extent it got to - animals are not the problem, but staff and clients (all complaints come to me), that is another story.
House went on the market today, feel quite settled about it actually. I had no sleep last night, and worked on work emails most of the night, then got about two hours sleep. I am so exhausted through the week, come weekends I cannot function properly either in the day or sleeping.
Although I had pain, like most of us do in lots of areas, lifting my arms was really hard, I couldn't blow dry my hair etc.
Well done for the weight loss, I hate looking in mirror. Its a shame you had to increase the dose of steroid, but we will all be different I guess - I am slowly going down but haven't got to the low levels I read others have where they have to go back up again - I guess I have that to come.
I seem to be able to catnap in the day, but cant get any quality sleep.
I am in Sussex, otherwise I would have contacted you ! Ha Ha
I hope your weekend improves and you feel a bit better.
Hi Lesley lets hope you sell the house soon and get settled, a less stressful job will be really helpful for you. We don't realise how precious our health is until we lose it.
I just try to sleep when I can and make the most of it when I do. I had a good day yesterday, not so good today but am coping.
Try lavender oil on your pillow, it helps with the sleeping
Don't wear your self out doing packing it will just set you back even further
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