Alendronic acid

[Cocopopslover]

UPDATE 30.11.24

I have seen a prescribing nurse (another locum but this time a paramedic) we had a long conversation and we have agreed that I try risondrate (think that’s the correct spelling) 35g once a week. I’m having a filling done next week so will start after that. I’m seeing a doctor on 10 Dec to discuss my DXA scan. The collarbone and shoulder pains have disappeared but I still have a stiff neck.

*******

I have been on alendronic acid for about 10 weeks. I have had side effects slowly getting worse. Mostly painful bones. Last couple of days I have had painful shoulder and can’t turn my neck. Also last night I was sick and today upset stomach. I also get brain fog.

I had a dexa scan and it was suggested I take these. I already take vit d3 daily, lansoprazole, and calcium tabs. I’m going to stop taking alendronic acid to see if these symptoms go away. Has anyone stopped taking them. Are there side effects from stopping.

I’ve been told I have to take for 5 years. I have got a doctors appointment but that’s not til end December. They called me in to discuss results of scan, but I’m on alendronic acid because I had already been called in to discuss results of scan.

Any advice as to what I ask doctor about regarding alternatives would be appreciated . I have a low tolerance of most drugs.

[DorsetLady PMRGCAuk volunteer]

You can stop AA, but if the results of your DEXA scan indicate you have osteoporosis [do they? Do you know results?] then you will need some sort of protection.

Maybe have a look the ROS site for options - or speak to one of their nurses on the help line.

theros.org.uk

Would say some of the issues you state could be due the Pred or your PMR - so are you are sure they are all down to the AA.

There’s nothing in your bio/profile giving any info, so it’s a bit difficult to give meaningful advice.

[Rubha in reply to DorsetLady]

I could not take Ava but am very comfortable with Risedronate. Ultimately , if that is also unsuitable , there is also an infusion. The Osteoporosis clinic explained to me they always begin with AA as it’s the cheapest followed by Risedronate then the most expensive, the infusion. Good money management but you have to push if the AA is not suitable for you. Osteoporosis itself can be dodgy to say the least so follow up with your concerns especially if you have established osteoporosis,

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Guess you meant this for Cocopopslover rather than me, but they [as the author] will see it anyway.

[Rubha in reply to DorsetLady]

So sorry....I did this once before...apologies

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Don’t worry - often happens..

[Cocopopslover in reply to Rubha]

I haven’t been sent to an osteoporosis clinic. I had a DXA scan (2 but they lost the first😫) and the consultant wrote to my doctor suggesting Alendronic acid as a precaution. I’m seeing a different doctor in December. Doctors seem indifferent these days just prescribe and forget you. Most of mine have been locums since 2020.

[powerwalk]

I went on the yearly infusion of this. Biggest mistake of my life. It has just about destroyed me and not im not exaggerating. A lot of people are ok with it. At least if its the tablets you took, it might be ok if you have to stop as opposed to the infusion which there is no way to get rid of. There are other meds which your doctor should be aware of. I hope the side effects ease off for you.

[PMRpro Ambassador in reply to powerwalk]

I have to say in defence of the zolentrodate infusion that I have come across no other such severe reaction - and although I did develop an arrythmia it has now resolved.

[powerwalk in reply to PMRpro]

Ive seen reviews for it since with the same issues. I just wish i could flush it out.

[Cocopopslover in reply to powerwalk]

Thank you

[Calmlake in reply to powerwalk]

Hi i just saw your post re zoledrolic acid infusion. I had one recently and it has set off my ibs symptoms of bloating constipation and griping. The alendrolic acid tablets also caused this a d I thought the infusion bypassed the stomach.I hope your symptoms resolve soon. Just wondered if they were similar to mine as there doesn't seem to be many with ibs issues.

Thanks

[powerwalk in reply to Calmlake]

Hi, i did have bad abdominal pain and bloating. My stomach has gone down somewhat but definitely i was getting a lot of stomach pain, holding a hot water bottle in bed at night to help. Also sore eyes, which i took a photo of, my right eye all bloodshot and really red eyelids. Its been quite a horror. The pain is easing but no way would i have another one. Your issues should hopefully ease, its the severe body pain thats been scary. I saw the rheumy this morning and she said she has seen these issues though im very bad with meds. Hopefully your issues are of the shorter term and will be ok.

[Calmlake in reply to powerwalk]

Thank you so much. I'm glad things are improving for you. It is an encouragement to me. When did you have the infusion?

[powerwalk in reply to Calmlake]

I had it on 31 July. Its been such a scary time to add all that pain to the point of not being able to do my walk or make a sandwich because my hands were so severe. I do know people can have this infusion without such severe issues. Im sure you will be fine, it may take a bit of time so hopefully it will not be longterm for you.

[Calmlake in reply to powerwalk]

Hi was that July 2024? I had mine under 2 weeks ago. It has been v upsetting as my ibs had been calm for a long while. For me it is bloating and constipation and griping. I did it for my bone situation obviously as it is so important. Thank you for your encouraging words and I hope you contunue to go from strength to strength.

[powerwalk in reply to Calmlake]

Thank you. Yes 2024. Best wishes.

[Calmlake in reply to powerwalk]

Just one more thing did it take about 3 months for your issues to improve. ?

[powerwalk in reply to Calmlake]

For me, yes. Stomach was bit quicker. Body only now starting to improve, if that keeps up, i believe its unpredictable. Fingers crossed though!!!

[Calmlake in reply to powerwalk]

Thank you again and take care

[PMRpro Ambassador]

It is fine to stop the tablets, there are no adverse effects other than the fact their effect on your bones stops. Risendonate is suggested as an oral substitute as it had fewer gastric side effects. There are other medications for osteopororis. I have had the zolendronic acid infusion someone else has mentioned but have had no lasting effects as a result. It did briefly cause an arrythmia but that seems to have gone.

I think you may be mixing up what is causing what of your side effects. The bone pain is most likely the AA and it is a possibility with most bone protection medications.

The brain fog could be any of your medications, including pred - or even the PMR itself. At least - I am assuming you have PMR and are taking pred. You have told us nothing of your reasons for needing AA and don't actually mention pred!

[Grannymiaow in reply to PMRpro]

I switched to Risendonate which I found improved my gut problems.

[Cocopopslover in reply to PMRpro]

Thank you for your reply. I had to google PMR and I haven’t got that, so not taking pred. I had a fall 13 years ago (I’m 76) fractured my pelvis but there were only two nondisplaced breaks after which I was up and moving within a few days tho recovery was 6 months. That’s when I had my first DXA scan. I had borderline osteoporosis and it was suggested I have scans every 5 years.

Last year I had a fall down some steps in australia resulting in a fractured wrist. Again non displaced so wore a half cast for 6 weeks. In my whole life those are the only breaks I’ve had. Doctor decided to do a DXA scan, my first in 12 years. Nothing concrete in my notes from the consultant who suggested Alendronic acid as a precaution. This makes me think I may still be borderline. Until I started that I had no bone pain at all. I have difficulty turning my head and have pain in my collarbone and shoulder. I think the best thing I can do is stop the tablet and see if it clears up before I see the doctor.

[PMRpro Ambassador in reply to Cocopopslover]

Right - this is a specialist forum for PMR and GCA for which the first line treatment is pred which can lead to osteoporosis so lots of us are on these various medications and assume anyone asking questions here is as well!

I think you are right about stopping the AA briefly at least - at least that could show if that is what is causing your pain and with the tablets - you can do that! Before restarting I would want the dexascan results in detail, proper numbers - and if you get a wishy explanation from the doctors, ask us!!

Your best source of info is the ROS Helpline probably so do call them. You will need the numbers from the dexascan for them to help properly. The t-scores are the important figures.

[Pixix]

I had issues with AA, but changed to Risenodrate & had no side effects!

[Cocopopslover in reply to Pixix]

Thank you. I’m going to stop and hope the pains go away before I see the doctor

[Pixix in reply to Cocopopslover]

Fingers crossed for you!

[Cocopopslover in reply to Pixix]

Thank you for your reply.

[Golfers1]

I took alendronic acid tablets and lasted 2 months. I had terrible side effects and my hair came out in clumps!! I am now also looking for an alternative. I would suggest that you do some research first and the helpline at ROS are very good.

[Cocopopslover in reply to Golfers1]

Thank you for your reply. I’m going to stop taking the tablets, do some research before I see the doctor in December.

[Harrywogan]

Hi, Cocopopslover, took ,AA for 4 years, never had a problem, I've been off them for 3 years a resting period doc said but thinking I'll start them again if it helps the bones, don't eat high calcium diet due to cholesterol problems and I do love my cheese ,so as D L says may not be AA causing all your problems. H

[PMRpro Ambassador in reply to Harrywogan]

You can get calcium from other sources besides cheese!!!!

[Oldies60]

I had very bad osteoporosis until I started Tymlos injections for 2 years which brought me back to osteopenia. Then PMR hit so I assume my osteoporosis is back because of the prednisone. I was told by a doctor friend that Fosamax did nothing for bone loss, so she recommended Prolia. I just had my first injection on Thursday. Good luck on your journey!

[Cocopopslover in reply to Oldies60]

Thank you. I had no pain until I started andrionic acid, I’m week 7 and have pain in my shoulders and neck. I’m not taking any more and hopefully I’ll just go back to normal aches and pains (muscles).

[Cocopopslover in reply to Cocopopslover]

Alendronic acid

[Oldies60 in reply to Cocopopslover]

I hope not taking it will help. Normal aches and pains would be wonderful!

[Cocopopslover in reply to Oldies60]

I’ll let you know. 🤞

I turned it down when I was working because I have a bad reaction to a lot of drugs, but as I’m now retired I thought I’d be ok as I wouldn’t having to take time off work and push through it (It seems it’s automatically offered at menopause) I very rarely take pain killers but I have the last couple of days to take the edge off. The pain has now spread across my back. 🤬

[Oldies60 in reply to Cocopopslover]

Maybe it's time to call your doctor. I took it for years and had no problems but it obviously didn't help me as my bones were very brittle. I even broke my humerus, but didn't know it until I had a shoulder xray.

[Cocopopslover in reply to Oldies60]

Thank you for replying. You obviously have an identified need, mine has always been borderline. I’m glad you were ok on it. It’s now suggested to only be on it for 5 years. Some countries say 2.

I fell in australia last year and had a non displaced fracture only needing a half cast which I wore for 6 weeks. I fell onto my back and my head bounced on concrete twice, so I was lucky it was only my wrist.

When I went to the fracture clinic they suggested to my doctor that I have a DXA scan (I had 2 10 weeks apart as they supposedly lost the first one). Consultant suggested (in a letter to my surgery, I didn’t see him,) that it might be a good idea to put me on Alendronic acid. The only other time I broke a bone was 13 years ago when I fell down the stairs head first and fractured my pelvis.

I’m seeing a prescribing nurse at the end of November and a doctor 10 December.

[Oldies60 in reply to Cocopopslover]

Glad you're seeing a prescribing nurse soon. I also did Tylmos for two years without side effects. That brought my osteoporosis back to osteopenia. Now I'm doing Prolia bi yearly injections. I fell and broke 2 vertebrae in 2021. I had a double spinal fusion. One of the vertebrae had crushed. My surgeon met with other doctors weekly to see if I could have the surgery. Thank goodness I did. I was crawling everywhere because I couldn't walk because of the pain. I still have bad lower back pain. I will have a procedure done the 22nd that changes brain waves so the pain waves won't reach the brain. I don't have a lot of confidence that will work. Nothing else they have tried has worked.

[Ebiker]

I also cannot tolerate most meds so doctor suggested infusion, as did the learned folk on this site. I have only had one and no problems. I am due the second one about now, a yearly.I found the most helpful people are the ROS osteoporosis trained staff. They will explain the alternative options. As others have said, give them a call.

[Cocopopslover in reply to Ebiker]

When the doctor (I won’t say my as we get locums) gave me it I told him I had reflux and take medication for that and he said oh good that will protect your stomach. But online searches seem to say they can reduce their ability to work. I’ve never had bone pain until now.

I also explained the problem I have with tablets and he said well the alternative is an infusion and you won’t like that. Which is not very encouraging.

I always take the absolute minimum of any drug my statin is now 20mg and Amitriptyline is now 20mg (used for neuropathic pain in my legs- not in the bone). I’ll look into ROS. I’ve seen a physio and can ask them. She’s aiming to strengthen my thigh muscles. Supposed to see her again after 6 weeks only to find she’s gone on maternity leave, so no physio at the moment,

Im glad to hear the infusion works for you. Did you have any side effects when you first had it.

Thanks for your input.

[Ebiker in reply to Cocopopslover]

No side effects at all. Unfortunately GPs cannot prescribe Zolendrate infusion, only specialists, so I should have had it, or a similar infusion earlier. In between me saying I couldn't take AA to new Dr, and my old doctor being back from retirement in as locum, 9 months later, I had 5 compression fractures. I then went private for the infusion. Who knows, but if I had been given it earlier, it might have prevented the fractures...but maybe not.As I said, I have found ROS staff so informed, pleasant and helpful.

They will explain alternative treatments for osteoporosis.

[Cocopopslover in reply to Ebiker]

Maybe that’s why the doctor said I wouldn’t like it as I’d have to go to hospital. My hospital is Addenbrookes I’ve been up there many times it’s not a problem. I’m not afraid of needles either it’s the side effects I hate especially if they are long lasting. I need to speak to the doctor and ask if there are any small fractures showing because as far as I’m aware there are none. Thank you for your advice.

[Ebiker in reply to Cocopopslover]

The infusion is simple. It takes only 15mins. I sat in a comfortable chair in a private room with tea tray and biscuits. No problem at all. It was a private hospital mind. My next one due now will be on NHS when the appts system wakens up! It will be in a local day clinic, I believe.I hope you get this all sorted to give you some peace of mind.

[PMRpro Ambassador in reply to Cocopopslover]

"he said well the alternative is an infusion and you won’t like that."

Why on earth not? It is a very small infusion - takes about 20 mins once a year. Compared with the weekly AA tablet it is a doddle!

[AliDeJ]

I had stomach ache with AA and was switched to Risendronate sodium. This has been OK as long as I follow the instructions and take it with a full glass of water. I used to think the reason for all the water was just to make sure it was flushed down the oesophagus, but I think it's also to protect the stomach. And I have been on it for 7.5 years...the rheumatologist said its OK up to 10 years when I questioned this. I just heard last week that I can come off it now.

[Cocopopslover in reply to AliDeJ]

Thank you for your reply. I’m going to see a doctor on 10 Dec but I’m not going to take any more. Hopefully the pains and nausea will have gone by then. I put a large glass of water by my bed then at 9am and drink it with the tablet. Then get ready for the day which usually takes about half hour. Next tablet I have has to be taken half an hour before food and another one 2 hours before food. So many things to remember.

[singingloud]

I stopped mine with no issues. I take K2 with D3 and calcium twice a day. My last dexiscan was fine at the age of 71. I’ve been on prednisone for over five years and tapering slowly to 8mg.

[nottowell]

I was constantly sick and unwell when taking AA i switched to twice a year injections and am now fine

[Maudie19]

I have had PMR for about 5 years. Never had a positive blood test though. Now down to 1mg daily with an occasional 2mg to keep it under control. 20 years ago after a scan they discovered I had osteoporosis in my pelvic bones. Had HRT treatment for 2 years and hospital declared I was fine, as long as I stayed on Calcium and Vit D for rest of life. 6 months ago I had a DEXTA scan and told I had to go on Alendronic Acid. I told GP No. She contacted a Rheumatology consultant who looked at my scan and records. Decision was I didn't need to go on to AA as long as I continued with Calcifirol and Vit D.