Here I am again. I hate taking the above drug. I would be interested to hear other people's side effects. I take one pill weekly, and am continually changing the day that I take it depending on what I have to do on that day. I find that it leaves me exhausted, and depressed. The depression is probably because I cannot stand feeling exhausted. It is a very weird feeling, hard to describe, but I am always glad when that day is over.! I had a bone density test last August and was told that I have to continue it. My results were,T score -2.7 spine, and T score -1.6 for hip, and -2.1 for femoral neck. When I asked my new specialist recently she said I needed to take it or I could have an annual injection of something else, forget what that was. I am hesitant to take an annual injection of anything.! I walk a lot and most of the time I feel fine, I have PMR and GCA. I take calcium and vitamin D.
I look forward to your replies, and again thank you for being there.
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DeliaGray
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My experience is the same as mine, l could have written the same as you! I found this stuff diabolical, l felt terrible and told the specialist I was not going to take it. I have yet to decide what to do. There are alternatives, l am investigating. Hope you find an alternative. Besh wishes. Pete
I have got a book called 'Your Bones' by Lara Pizzorno MA, LMT with Jonathan V. Wright,MD. This is a fantastic book as far as I am concerned. It will provide advice on how to look after your bones without the terrible side affects of 'Diabolical Acid' (sorry about the typo) that some of us suffer. you can order this on the internet and I think it was less than £10 and worth every penny. Also search on line for a clinical study called the COMB study: Bone Density after Micronutrient Intervention by Stephen J. Genuis and Thomas P. Bouchard. I am now using the formula provided in this study. I told my specialist and he had no objection. But time will tell if it works or not. However I have no side affect and don't feel so depressed! Some of us experience depression on Prednisolone until we can get the dose reduced so the AA only adds to this, so if you can find an alternative it will help. Any way, get the book it will make you feel better and you will learn a lot about bone health. We will get through this by sheer determination, so be brave and like me, there was no way in that I would take the injection, who knows how I would feel after that, you cant take it out once its in. Bearing in mind I'm not a medical man, if I can help further let me know.
Thank you Pete, I will look for the book. Like you I feel that if we have an injection of something that lasts a year in our body, and we have some kind of allergic reaction, then that would be one miserable year.!!! All the other problems are bad enough.!!! It is such an encouragement to get other people's feelings and experiences. I only have one dose left on my present prescription of Al. Acid, and I am thinking that I will not renew it which i usually order by phone. There isn't much point in discussing it with either my GP or my Rheumy, although both are wonderful people. I know what they are going to say.! As you say, we will get through this by pure guts and determination, but each little bit of help makes that a little it easier. You have a wonderful day in spite of all of this.
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Sorry for the typo, not very good at this am I, but first ward should have been 'Your'
I am just starting on a short 6 day dose of prednisone. Not officially diagnosed but test and symptoms show PMR Dr put me on 20mg/day once in the morning for a 6 days. It took all the symptoms away. I have 3 more days and have been looking at Turmeric/curcumin extract from Costco and licorice root to fight inflammation. I hope and pray it works.
I've just been reading a thread on the Patient PMR forum which indicates that taking licorice with pred is a very bad idea - you might want to check into this. As far as I know turmeric is safe but is not particularly bioavailable, although an extract would give you more than the root itself. Personally I like a ginger tea made with grated ginger root and as I've in the past found it helpful for headache and stomach upset I'm pretty sure it does have some anti-inflammatory effects. Good luck (but please do check into the licorice thing). ❄✨🎄✨❄
Delia. I have GCA and ONE, although PMR was in remission when I was diagnosed with GCA at the end of 2014.
I take AA weekly, on a Saturday, and can't say I've had any side effects so far. I leave it to work for at least half an hour before I have a hot drink. Maybe I've just been lucky so far, - we deserve some luck sometimes with these awful illnesses!
Yes, you are fortunate to have no adverse reaction to this drug. It is horrible. I began last August and it doesn't get any better. I am about ready to decide that I will not take it at all The rest of the illness I can manage without adverse effects. Thank you for your response, we will all get through this in time, but time seems slow sometimes.
I've been taking it for over 2 years. Initially for the first 3-4 weeks, I had the same exhaustion. I spent the best part of the day lying down due to head spinning, however I did persevere and these problems disappeared completely. About 18 month ago I developed a stress fracture in the ankle (distal fibula), which no one could say for certain why it developed. I'm 49, I have PMR & GCA, and my dexa scan showed I have osteopenia T-Score -1.91. Last week I developed identical symptoms in other ankle, and have a confirmed diagnosis of stress fracture distal fibula again. The Orthopaedic consultant feels it may be the AA that has caused it, so have to discuss with my Rheumatologist when I next see her. oh the joys, I'm back to working my long days in the ward in my walking boot again.
HI Runrigo, I have been on it since last August. I absolutely hate it. I have no problems with any other meds so I don't think I am imagining it. Sometimes I wonder if I just have it in my head that I will feel terrible the day that I take it. There however, have been one or two times that it has not affected me, and I have no idea why that would be. Everything else I can manage, so I am seriously thinking of coming off it, especially now that you have told me that it may have caused your stress fracture. Thank you for your helpful response.
Funny enough I found in the early days that sometimes I would be fine. Found if I ate a substantial breakfast like a full English, I would be fine. But eat a brioche bun and coffee and head would spin. Forgot that till you mentioned being fine sometimes. I'm sure your not imagining it, we all take cocktails of pills that some are bound to disagree. Plan to speak to my Theumy re stress fractures then consider changing or stopping.
I was told that I should not eat for 2 hours after taking it and it has to be taken on an empty stomach with a large glass of water and you must remain upright for at least a couple of hours after taking it too. I think this is part of the problem for me, because the pred makes my stomach rather hypersensitive to any other meds I take anyway.
I think that is a trifle OTT - the instructions are that you should take it with a large glass of tap water and remain upright for 45 min before eating or drinking anything else. In fact, this link
Thanks for that. I'll put it to him when I speak to him tomorrow and see what he says. I really want to try and find an alternative though, mainly because of the severe cramps, which render me useless for the whole day. It wouldn't be an issue if it didn't happen every week. I'm leaning towards asking for the annual injection, but a little put off for the same reason as others regarding possible reactions
As I say, in the UK you tend to have to work your way through the list. But there are other things to try if you really do need it and I'd say you have grounds. My dexascan is good enough that even in the UK they wouldn't be nagging at me.
I only have to leave 30 mins between AA and food. I take mine every Sunday, except for days like today when I over sleep. Will delay till tomorrow now. Good luck with your Rheumy
Thanks. It my GP, but at least I have the advantage of having one who actually listens to what is said and doesn't start writing a prescription before you've even got into the surgery, like one I used to have
I have just tried the link you provided and unfortunately there is a run time error as follows:
Runtime Error
Description: An exception occurred while processing your request. Additionally, another exception occurred while executing the custom error page for the first exception. The request has been terminated.
Try it again - I've just used it from my post and it worked OK. Patient.info does occasionally show that blip. Since I use them a lot it gets irritating after a while...
Yep same sort of symptoms. I've been taking a pill weekly since February. Feel washed out all day. Half hour after taking it I do sink it with a bowl of porridge and this does seem to sort out any digestion problems.
Just a quick update n this. I saw the GP and he changed me onto Risedronate. Problem solved! No side effects, stomach cramps etc at all. I have been taking it for 2 weeks and the difference between the way I felt after AA and how I feel after this ...... no contest!
I have some adverse effects to the acid too. I get nausea and stomach cramps and a general feeling of malaise for the whole day. I'm due to speak to my GP tomorrow, so will ask him if there is anything else on the market that I could try, as I don't need stomach cramps on top of all the other problems theses 2 diseases produce. If he comes up with anything different I'll let you know
NICE has provided a hierarchy of drugs that can be used if anyone is unable to take alendronic acid - which, needless to say I suppose, is the cheapest.
lists them - there are far better refs but I can't find them quickly!
"NICE guidance on the use of alendronate, etidronate, risedronate, raloxifene, strontium ranelate and teriparatide for the prevention and treatment of osteoporotic fragility fractures in postmenopausal women therefore remains unchanged."
Bisphosphonates in general must not be used for anyone with a gastric history, including reflux. Strontium ranelate must not be used for anyone with a history of DVT or a cardiac disease family history.
There are a couple of other things, denosumab (Prolia) and Forteo, but they are very expensive and you either have to have very good grounds for needing them or work your way through all the others first and not be able to take them!
I have yet to see a dentist for the first time in 3 years... (Long Story!) so I guess just another excuse to delay taking AA?
Have been on AA for three years now, and visiting the dentist as usual. They need to be aware that you are on AA, but unless you have an extraction there shouldn't be any problem whatsoever. I take an updated list of tablets every time I go, so the dentist knows what dose of Pred I'm on as well. So no excuse - to go to the dentist, or to start AA! Come on, you're a big boy now, so bite the bullet. DL
Hahahaha... with my teeth I'll not be biting anything Lol... I think a bit more research into AA before I commit... still trying to get over the initial shock!! Can anyone tell me why you need to be standing for half an hour after taking AA???
I think it's mainly because it can affect your digestive system, and by leaving it at least half an hour and taking it with plenty of water, in theory it should get well past your diaphragm and oesophagus and down into your digestive juices! You don't have to stand necessarily (although my late husband always called it my standy uppy tablet) but you have to make sure you don't lay down or bend over. Those actions affect your diaphragm and the oesophagus, and you could end with a reflux problem.
I'm sure somebody will give you a better and more accurate reason in time.
Not necessarily standing - sitting upright is enough as long as you don't bend over at all.
It's because if you have any reflux of the drug into the oesophagus (gullet) it can irritate the lower end of the oesophagus even more than is the case with simple reflux. Long term it can cause quite significant damage and has even been blamed for leading to cancer. It was eventually decided that the problems patients complained of were because of not taking the tablet in strict accordance with the instructions so they made it clearer and doctors are meant to be very strict.
Anyone who physically can't sit or stand up for the half hour, take the large glass of water or is mentally unable to understand and comply with the instructions shouldn't be given AA. If you have ANY history of reflux, digestive or swallowing problems it isn't advised. You must use a large glass of tap water to take it to wash it well down into the stomach - any water that has extra mineral content interferes with the absorption of the substance, one lady drank their well water and it was enough to stop it being absorbed. If you overdose the instructions are to drink milk to bind it - and not to induce vomiting.
Can't think of anything else - I'm sure there is!
I took it for about a year with no adverse effects, then I developed severe leg pains and stopped it, I was offered the one every 3 months, which I took a few times but the pain persisted. I stopped it altogether.
I also had pain after 18 months of MTX, so I am off that now. My Dermatologist reminded me that I had previously had pain when taking Atorvastatin. I have no idea what the connection is.
I had a DXA scan last November which is apparently ok
At a guess they are all drugs which have muscle and joint pain as a listed side effect. Atorvastatin almost had me in a wheelchair after 10 days of half dose. Never again!
It was only after I had stopped Atorvastatin, that I realised, that was what had been causing me to lose my balance and fall over when I bent down, if I wasn't careful.
If you dig for long enough, it actually says on the data info for Simvastatin that it can trigger PMR - ie someone was diagnosed with PMR whilst on the clinical trial. Maybe coincidence, maybe not - but there is a hospital in the US which has a total ban on the use of simvastatin and I know a few people who regard it as an evil drug.
That's very interesting. I haven't looked at any statins for years. I don't have PMR but Mucous Membrane Pemphigoid. I registered with this site because PMR sufferers use the same drugs, or, some of the same drugs.
I too had terrible problems with the dreaded Alendronic Acd including excrutiating pain in my stomach. My GP put me on Risedronate and all was OK, took it for about 2years.
Off pred since end of March and now off Risdronate as well. Hope you can get something that suits but like most others would not contemplate a yearly injection.
I have been taken off AA and placed on Risedronate. I took my second dose on Monday and I am happy to say that I have had no side effects from it whatsoever. Great to find find at least one med I can take without having to resort to an extra one to stop the reactions to the first one.
Unfortunately, not much to say that is bad about Alendronic acid (alendronate sodium sold as Fosamax in the US).
I have been taking it weekly (70mg) for 16 months since I started prednisone for my PMR and during this period I have not noticed any reactions. I started it with pred 20mg and now I'm tapered down to 4mg - my only problem is extreme pain in my hand joints - nothing to do with Fosamax as far as I can tell.
I have had PMR/GCA for five years and was prescribed Alendronic Acid after a year. I found it very difficult to swallow the huge pill so was given Zolendronate by IV push. It entails going to the hospital once a year for an afternoon to have the drug administered. This method was much better for me. I was given the drug for three years and the most recent DEXA scan showed that my bone density is excellent. I have recently stopped taking the Calcium and Vit -D supplement too. However I continue to take 9mg Prednisolone daily, 20mg Methotrexate weekly and 5mg Folic Acid weekly.
I hope this goes a little way to answering your question. Good luck.
I was diagnosed Risedronate Sopdium after my DExa scan, and it didn't agree with me. The main side effects were very painful knees to the extent that it was very painful to lift my leg up from the road to the kerb when crossing the road. I stopped taking them and the pain went from my knees. I am now taking Alendronic Acid which so far has no side effects.
Having proved incapable of sticking to the one a week Alendronic dose due to the wait followed by the wait after my PD meds, all the while aching from what has to date not been acknowledged as PMR, I was prescribed ibandronic acid which is a once a month pill. You take it in the morning on an empty stomach and then have to wait an hour
upright before taking any food or drink but once a month is much better as it doesn't matter if you drift a day or so after, or even before.
Thank you Paddyfields, now I am reading that AA shouldn't be prescribed if one has acid reflux. I have been on Omeprazole for years now. Maybe the two are not good for me anyway, and if I have to stop one of them it will be the AA.!
Hi there I was recently diagnosed PMR and is on Pred 15mg daily and Omeprazole once a day. And I am on AA and Adcal-D3 for osteoporosis for many years. I took the AA on the usual day early in the morning about 5am, sitting up in bed reading catch up with email for an hour, follow with omeprazole and wait for an hour, calcium next by then i will get up and get ready for the day. Between that probably killed 30-45mins get the breakfast and take the Pred and I don't get any side effect. It works for me and hope that may helps you. Omeprazole is to help to protect the stomach for all med we take. That is what I was told by my doctor. And it works, I used to have heart burnt and reflux during sleeping, thanks to the doctor giving me the omeprazole and I don't get it now. I also take Goji Berries juice which u can get from health shop it helps with regulate the blood sugar and that helps with my eye sides. I read some PMR sufferers mention the vit C in between the Pred. Try to eat a banana an hour after the Pred it will help Pred to work better too. Now I am not as strong as before but I can actually walk without problem and most pain gone.
Hope the mail helps to all PMR sufferers. Not a nice thing to have
Thank you Lee. I am also taking omeprozole twice a day. I seem to have got used to the AA and my biggest problem seems now to be able to get below 10 mg of prednisone without flare-ups. That is a little disappointing as I have been doing the extremely slow method of a monthly change of 1 or 1/2 mg at a time. It looks as though I am pretty much stuck at 10 . I was diagnosed with GCA/ PMR almost 2 years ago and began at 80 mg prednisone per day.
Thank you for your response and I wish you well in your recovery. Have a good day today. Delia
There is another thing you can check out on website. Search for diet for PMR and that might help you with what to eat and to avoid. Maybe you can find a solution that helps you. I believed in diet and that can change everything. Won't get rid of PMR but I am sure we can find some life back.
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