I’m new to this forum, and this is my story. It’s a bit longwinded, but I think all the facts are important in order to make valid comments
I am a long-term pain sufferer from muscle spasms of the neck and also more recently (5 years or so) from a torn rotator cuff both of which cause migraines. I also take omeprozole for H.Hernia and I am on low dose thyroxine . I also suffer from anxiety.
I had a lumpectomy for hormone related breast cancer, along with radiotherapy and then calcium suppliments just as Covid emerged....
I was put on Letrozole, which became increasingly unbearable due to bone pain. After a fair while and lots of complaining I was changed to Anestrozole. Within a week I could walk properly again and most other joint related symptoms abated.
During the consultation that promoted the change to anastrozole, it transpired that they had forgotten to tell me I was “at severe risk for osteoporosis” and I was prescribed Alendronic Acid by the oncologist.
By then I was due my second Covid Vacs, and decided to wait for 2 weeks before starting the AA
During those two weeks I was almost “normal” and relatively pain free.
For the first few weeks on Alendronic Acid (Once weekly dose) I was reasonably ok other than odd pains and constipation. Then, my old rotator cuff injury started to hurt almost constantly. I started to get pains in my wrists and feet which have got steadily worse. Also, some odd muscle pain around my breast area. I am continuously exhausted. I spoke to the doctor who said “We will review it all in September, as there are no other meds to offer except injections” (Clearly this is not true as I have seen from this forum there is a drug called Risedrinate)
However, a few days ago (about the 9th week of AA) I started to get acid/heartburn pains which are constant and don’t go away even with taking the lower dose of omeprozole or gaviscon. This has made me very scared, and the whole situation is becoming utterly unbearable. I called the oncologist who said basically it’s the doctor’s problem so I will have to try to get another appointment next week.
In the meantime, please can anyone A) offer advice as to how to control this stomach pain and B) has anyone else experienced similar problems ? (It’s so hard pinning down what symptoms are caused by which drug/condition)
Thanks
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Calamintha
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So sorry to read your posting. If it was me I would not take the next AA medication. You know your body better than anyone and the discomfort that you mention you are suffering with are listed as side effects. You are correct that there is a drug called Risedronate from the same family as AA. You MAY find you tolerate this better, that is if you wish to take the risk of having the same side effects as when on the AA. You may well be asked to do this. At least if you stop now your body can start to heal from the horrid side effects you are having. Then you may feel like trying Risedronate. I am sorry I cannot offer any other advice. It makes me angry as you are being neglected if no one wants to bother to talk about it until September.
You were told you were at severe risk of developing OP? Yes, you may be. I know that omeprazole taken longterm can add to the risk and I don't know about your other treatments but perhaps they are too. However as Kaarina says there are other options to AA and stopping what seems to be causing the most recent issues even if just to make sure it is the culprit seems wise. Can you have a conversation, if not with your doctor, with your pharmacist, and ask if any of the other medications you are taking could be contributing to the pain issues and what can you do to mitigate that side effect? I know you can't just stop taking things which are important for treating your conditions but there may be lifestyle changes (e.g. how the meds are taken, timing, possible interactions). And telling someone who has been through what you have been to wait another two months before having any discussion about the apparently drug-caused pain you have been suffering is incomprehensible to me. I don't know what you've been advised regarding diet, but possibly there are some things you can do to help rebalance your gut microbiome which may be imbalanced because of the various health issues and medications. I'm not qualified to offer specific advice but it might be something for you to look into. And if you can take some supplements we always advise Vitamin D and Vitamin K2 (not K1) the latter because it sends calcium to the bones where you want it to go!
I get mine from a store that sells health products. Never seen it the local pharmacy so far, but, then, a few years ago the pharmacy was only selling calcium carbonate! Mainstream can be rather slow on the uptake.
Like the others I think you should stop taking AA, I had to stop taking it and the effect was immediate, the gastric problems stopped. I was also having problems eating . I haven’t been put in any thing else yet but what I am doing in the mean time is a lot of weight bearing exercise( squats lunges with 5 kilo weights) and walking and eating healthily( a well balanced diet with calcium rich foods) . I also take a bone support supplement .
Bones take a long time to change, so stopping the AA for a few weeks won't make any difference. I would recommend that you stop it and see if the symptoms clear up. That way you can be certain it's the AA causing the problems and not something else that's developed coincidentally. I would also ask your doctor to explain what he means by "severe risk for osteoporosis". I know there's evidence that long-term use of some medications can cause bone loss, but like everything, some people will be impacted more than others, so it might be worth asking for a DEXA scan to assess your current bone health and whether you even need meds at this stage. My understanding is that the meds are designed to treat osteoporosis, not to prevent it. If used as a preventative measure, how long will you have to be on them? Presumably for as long as your other risk factors (eg your other medication) last, which might be life-long. Yet osteoporosis meds aren't recommended for lifetime use! Finally, if your doctor convinces you that you do need osteo meds at this stage, then you have a right to try other options if AA isn't suiting you. You can ask for Risedronate as an alternative, and if that's till a problem, ask to be referred to a rheumatologist to explore other options (injections/infusions). But be aware that if you're ever offered denosumab (prolia), if you have to stop that at any time, you need a relay drug to reduce the risk of rebound fractures, which almost certainly would be a bisphosphonate (like AA/risedronate/an infusion) so you need to know you're able to tolerate one of the bisphosphonates in some form.
The oncologist said "high risk of future osteoporosis" and has booked a DEXA scan for March 22. I dont recall seeing any paperwork on the DEXA scan I had in March 2020. I presume I could request a copy ?I also presume that many women of 60 would be "at risk" and not know about it if otherwise healthy ?
You can most definitely request a copy of your dexa scan result. You are entitled to have a copy of your results. You do not even have to bother your doctor. You can ask a receptionist at your surgery to run you off a copy.
I didn’t get on at all well with AA and stopped after four months. It wasn’t my gut which I thought would be the main problem, it was my bones, I was permanently exhausted, I felt absolutely ancient, I had no energy or with to carry on. In the four months I took AA I had four prescriptions for sinus attacks, my teeth hurt, my ears hurt, my mouth hurt, I had swollen glands. I just felt awful.
My husband suggested taking a break to see what happened, well, I returned to my former self, that’s what happened.
I read a lot about osteoporosis, started taking bone friendly vitamins and doing weight bearing exercises, I now eat a bone friendly diet, loads of leafy green veg, nuts and seeds - got great advice from Met00 and from the ROS page for a calcium and vitamin D rich diet.
I discovered that the calcium and vitamin D tablets my GP gave me really upset my gut so after a discussion with my fracture liaison nurse I increased the calcium in my diet - I was already eating a lot more than I thought I was - I bought s9me calcium citrate and I take 300 mg of that a day just to top myself up. I take vitamin D on its own - anything between 1000 and 3000iu daily.
When I had my annual call from the osteoporosis nurse she was a bit shocked to discover I had given up. She said I should have contacted her and I’d have been given Risendronate which had fewer side effects but it was too late by then, I’d made my decision so if you push there are other bisphosphonates out there. I’d be careful if they offer you Prolia though - for the reasons Met00 has given above. I suppose a lot of what you decide will depend on your DEXA scan results.
I was given omeprazole in the past- boxes of the stuff - but I didn’t want to take it all the time and that was before I discovered PPIs were bad news for your bones, so I totally cleaned up my diet, I was already totally gluten free but I also cut out all the sort of things that weren’t good for me - no more fizzy drinks, McDonalds, chocolate etc, I don’t drink much milk or eat yoghurt, I do have cheese but not a massive amount, that’s why I get my calcium from other sources . I’ve pretty much cut sugar out of my diet completely and I eat more veg than fruit these days.
Once I went totally GF then cut out the other stuff that affected my gut my IBS improved beyond belief.
But then I wasn’t taking omeprazole for a hiatus hernia so it was probably easier for me to give it up.
Thanks. That first paragraph is me exactly ! I am so tired I have to rest after every activity.... and when I say activity, that can just be washing up ! I almost feel "drugged" like being concious is an effort.
Also; how long did it take to get back to "normal" please ?
I can’t remember exactly how long it took but I was back to normal quite quickly - have just asked my husband who said it was probably about a month and I had taken it for four months. I don’t know why but I felt my whole personality was changing, apart from the constant sinus problems etc I just felt feeble and clung onto my husband for dear life when we went out.
Years ago we often used to see very elderly ladies (it was usually ladies that I noticed) going round the supermarket with their son or daughter at Christmas time - they had obviously come to stay for the holiday and looked completely overawed at being out in a crowded store and used to cling to their relative as they looked at everything - well I felt just like that. I felt like some sort of invalid.
Good luck whatever you decide to do. I felt terrified at first - but then I was in a very bad place at that point - I found ‘the talk’ with the fracture liaison nurse absolutely terrifying although my husband who was present didn’t!
I was scared taking AA and scared not to but I’ve got used to it now and realise that people fracture when they are taking AA and a lot of people who don’t take it don’t fracture. I’m much more confident now.
I’m so sorry for all the anguish you are going through . We have to be so careful with any drug that is prescribed to us. Doctors rarely inform their patients of the dangerous side affects directly related to a lot of drugs prescribed.It is our responsibility to listen to our bodies and call the shots. Personally having taken Fosomax once I would never do it again ! This drug immediately cause terrible pain in my stomach and esphogus .. constant burping which took 5 weeks to go away. I also had muscle twitching in my cheek .. I stopped after one treatment .
Having read up on all the side affects AA causes I felt betrayed by my doctor . And told her don’t bother prescribing me another type of AA I’ll take my chances . Even if I break something bones do heal .. but to live with chronic pain in joints and digestion issues plus many other side affects is just not worth it . It would be risking the quality of my life!
Unfortunately doctors are not taught that osteoporosis can usually be prevented, and even if bone thinning has occurred (called low bone mass or osteopenia) that can often be reversed. Have a look at my story, and maybe Calamintha can pick up a few ideas too:
I was put on AA after an on line consultation with a radiographer. My Dexa scan was delayed through Covid. I felt dreadful after 1 tablet I ached from head to toe & had constant diarrhoea. I refused to take any more until I had scan & diagnosis. I have now had scan which luckily for me was normal. Still have lower back pain but keeping active by walking, swimming & stretching exercises.
I'm sorry to hear about all you've been going through, Calamintha. I can't advise on Alendronic Acid and you've already received some helpful insights and suggestions. I just wanted to comment on a small point. You mentioned that you are on low-dose thyroxine. Have you had your thyroid hormone levels tested recently? It might be good to check TSH, FT4 and FT3 (not commonly done.) I'm not suggesting this explains any of your symptoms. However, many who are undermedicated report problems with pain, digestion, energy levels and other symptoms.
There is also a connection between thyroid and bone health, so anyone concerned with their bone health should know whether they have any thyroid issues. It may be that low-dose thyroxine is optimal for you, but if a dose adjustment is indicated, it could help your body function better.
I hope you get relief from this terrible stomach pain soon and begin to feel better generally.
I was very sad to read your story and wish you the best for finding the right medication that works for you.
I have taken Alendronic acid for many years without being conscious of any side effects until recently. I am now thinking that my very gratey throat may be a side effect - I have to keep clearing my throat and some times have a little difficulty swallowing especially a fizzy drink. I have had the recommended year off, then three more years of taking it and am now going to have another gap to see if my throat improves. I also have what is probably pain from arthritis (I am 90) but maybe due to the alendronic acid. I seem to be telling you my story but I hope it may help you to decide what to do. I may have been lucky to have had so little in the way of side effects and would also stress that my bones appear to be in good nick!
I stopped taking AA after 10 weeks because of reoccurrence of gut problems, similar to when I had a bleeding DU some years previously. I was also getting awful bone pains in my long bones, which were stopping me from sleeping. They were like the 'growing pains' I had as a child.My GP had palmed me off with antacids when I started with AA, but these didn't help the indigestion. She eventually agreed to refer me to an NHS consultant, who said I shouldn't have been given AA in the first place.
All this happened in 2011, so I'm not up to date with alternative OP treatments.
All you can do is stop taking the AA and go back to see your doctor. Get a consultants appointment if possible. OP develops slowly and responds to treatment slowly, so even if you end up having to wait a few months to get an appointment, it won't make much difference.
I've been on Strontium Ranelate ever since seeing the consultant in 2011. It agrees with me, but with your medical history being more complicated, you need expert advice.
Anastrozole which prevents hormones from helping bresat cancer to grow may be the cause of some of your symptoms. Read up on the side effects.
Also the article above (see Conclusions) seems to say that those with normal bone density may not need to be on a OP drug and that when you can eventually come off Anastrozole in 5 to 10 years bone density can partly recover. Maybe you just need to be monitored for OP .
Did you have your bone density assessed prior to starting these drugs? I agree with others here.
Stop taking AA and get your DEXA to see how your bones are and speak to a physician about it....one who cares.
......Calmintha....I had a "bad stomach" for four months this past winter. Never even took a Tums before. I healed it with a "gastritis diet" and Pepcid which isn't as bad for yor bones as PPi's. I copied this below:"However, the long-term, daily use of aluminum-containing antacids or proton pump inhibitors (PPI) may affect the absorption of calcium and appears to increase the risk of fracture. To lessen the harm to the bones from antacids: Consider an H2-blocker such as famotidine (Pepcid) instead of a PPI."
Hi Calamintha, I also had hormone related breast cancer, 7 years ago now, and after radiotherapy was prescribed Anastrozole like you. Anastrozole, prescribed for oestrogen positive breast cancer, can cause loss of bone density as it blocks the oestrogen and basically increases the effects of the menopause. I was given a DEXA scan which diagnosed osteopenia and put on calcium tablets but the next scan two years later showed a further 9% bone density loss so I was prescribed Alendronic Acid which I only had to take while on the Anastrozole ie a further 3 years. I wasn’t keen to take this and had been working out at the gym to try to avoid it. Apparently though, it can be somewhat protective against bone cancer so I was resigned to it (my Mum had breast cancer then bone cancer). For me, luckily, I didn’t have side effects but was careful to follow the instructions, sitting bolt upright in bed for one hour after taking it and got to quite enjoy my slow start to the day, usually reading. Also room temp. water rather than too cold. I’m now just on Vit D3 (and take Vit k mk7 after reading about it on here).I’m so sorry you are having nasty side effects, they are certainly quite common with this drug, and Anastrozole can also cause joint pain etc. I think a review with your gp is a good idea maybe after a short break from the AA to see if it’s the cause.
Hi. So sorry to learn of your difficulties. Just because a drug is prescribed....doesn't mean we have to have it. The decision is ours . I watched what osteoporosis drugs did to my mother. The hypocratic oath which doctors take says, "first do no harm." Many prescribed drugs do cause harm. A large contributor to my own severe osteoporosis was asthma medication. I'm 67 years old and now take no medication at all. I have done a lot of research. I've spoken to rheumatologists, the qualified nurses at the Royal Osteoporosis Society and pharmacists. I've listened to and followed many excellent words of wisdom from others on this site.
Both of my parents took so many pills they rattled. When I realised what many drugs are made from....I decided to " let nature be my medicine" or at least supplements made from good substances....not chemicals. Research, lifestyle and diet change.
No two of us are the same , we have to decide for ourselves. It was actually my local chemist who put me on the natural healing route. He could see the side effects of the stuff I was being prescribed. I'm so grateful to him. I'd had so many antibiotics, they no longer work for me......sad thing about that is, they had diagnosed chest infections when the problem was actually asthma. The asthma was being caused by other tablets I was taking. And so chain reactions get set up. In those days I blindly took anything doctors prescribed....Now my body tells me if I put something into it which it doesn't like.
If you do choose to opt for a different drug to Alendrolic Acid......be aware some of the alternatives are simply different brand names for a biphosphonate.
Wish you the best whatever you decide. Xx
Hi Calamintha, you could ring and speak to a Specialist Nurse on their freephone number at the Royal Osteoporosis Society (ROS) about this. Their number is 0808 800 0035
My osteoporosis was first found in my hips/neck of femur when I was 40, because my hormones suggested I might be heading for an early menopause. Actually, the OP would have been caused by not being able to walk due to paralysis in my bottom half for 20 years. I was put on HRT for 3 years, but had no other treatment. (Actual menopause didn’t come for 12 years.)
Fast forward 20 years and, like you, I got hormone-related breast cancer. I too was put on Letrozole, and it initially gave me severe pain in my elbows. Whether my knees would have hurt without the paralysis I don’t know, and my hands already hurt for other reasons, but I stuck with it and the pain it apparently caused is now much less frequent or severe. My information on Letrozole says it causes osteoporosis in between 1 in 10 and 1 in 100 people (and I believe the other aromatase inhibitors are similar), so to say you are at “severe risk” of OP seems slightly over the top, certainly without knowing the results of a DEXA scan.
At my own post-surgery/radiotherapy scan in Jan 2019 they re-discovered my OP. My hips and neck of femur had scores of T-3.8, and my spine had got into the act at T-2.7. Having read these results, my oncologist’s immediate reaction was to offer me calcium and vit D supplements and alendronic acid (AA). I said no to calcium, because I eat plenty, and knew my levels were fine. I also said no to extra vit D because I also have sarcoidosis, which means vit D supplements are likely to cause hypercalcaemia and/or the too-high levels of 1.25dihydroxyvitamin D that can cause bone thinning every bit as much as not having enough! At this stage he decided I should see a rheumatologist, who encouraged me to have Zoledronate (an infusion version of AA). His oppinion was that, regardless of my sarcoidosis, I should have vit D supplementation first. Since this could put my life at risk (high vit D levels affect my heart & lung function), I said no, at least for the time being. Regardless of my personal issues, reading research papers on the subject leads me to believe that the people who find AA intolerable tend to be those with inflammatory conditions (eg rheumatoid arthritis or indeed sarcoidosis).
If you have inflammation from your rotor cuff injury, perhaps AA exacerbates that. Stomach issues can be due to inflamation too. AA only seems to reduce the chance your personal chance of breaking (as predicted by your FRAX score after a DEXA scan) by about 50%. Not everyone with low bone density breaks a bone, and not having had a break means you could be one of the lucky ones. I have had no fragility fracture either. I lift my own body-weight every time I transfer to bed, toilet, car and so on, so hopefully my top half remain will relatively good, and I also don’t want to squander the opportunity to use AA down the line if they didn’t manage to zap all my cancer (I had the most conservative treatment possible) and it gets into my bones. There is a limit to the length of time AA can be taken.
My own approach for now, and of course I’ll never know if that isn’t the best strategy, is to keep my fingers crossed that appropriate diet and as much exercise as I can manage is the answer. We all have choices. Gather all the information you can about your own situation, then decide what is best for you. If the goal posts change, you can rethink later.
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