alendronic acid

[Knip]

Hi I have had Osteopenia for several years. I also have Chron's Disease and Rheumatoid Arthritis as well as Hypothyroidism. My question is that following a Dexa Scan six weeks ago, and not having been told why, my GP, on the advice of Rheumatology, has issued Alendronic Acid 70mg once a week. Having read the possible side affects, I am very worried about taking it, so would value any comments from others regarding it, before I do so. I suppose I'm scared it will set the Chron's off, big time. I have emailed my Rheumatology department to ask why they want me to have it, but may have to wait 8 days for the response. They are rushed off their feet since Lockdown. Thank you in advance, Knip.

[Metalmich]

Hi Knip, sounds like you need more advice.. not sure how you get answers when you cant get through to speak to anyone. G.P.s on the whole dont seem to know all the answers and refer you to Rheumatology clinics. I have been told i now need to have zolendronate infusion..really worried about it as i seem to get side effects from most medication i am given. It is fine to be reassured most people dont get any side effects, but you are not most people. Good luck. I would like advice about anyone else who has had zolendronate infusions and if they had side effects…

[Knip in reply to Metalmich]

Thank you Metalmich for your empathetic reply. This site is so helpful in so many ways. Hope you get some replies re your infusions. I have emailed RA and hope to hear back in, because they are busy, eight working days. Take care, Knip.

[MWZ3]

Osteopenia doesn’t usually require meds. Have you broken any bones? Do you know your tscores?

[Knip in reply to MWZ3]

No I haven't broken any bones despite having a bad fall from a low step backwards a few years ago, thankfully and a very bad fall, just four years ago, which led to a visit to A&E by ambulance. I do have Rhuematoid Arthritis and Osteo Arthritis in both knees and my right hip. I had my left hip replaced in 1989 and then a socket revision in 2005. I did have a Dexa scan six weeks go, but have not been given the result as of yet, so wonder if that is showing progression to osteoporosis...but even if that proves to be the case, I feel flummoxed/angry that they could ask my GP to prescribe and issue AA without discussing it with me first! It's not like taking a Paracetamol, is it! Having Chron's disease and receiving such helpful advice on here has really helped me to be strong...I normally back away from confrontation but I am not going to be talked into this! My thanks go out to you all for your replies.

[MWZ3 in reply to Knip]

If you’ve broken no bones when you’ve fallen maybe drugs aren’t necessary especially when they’re not mild meds or have no issues. I’m nearly 80 so not taking them and have resisted since I turned 70 and my scores are way past osteopenia lol. I also have crohns and on meds for that that work well. I’m also diabetic and take meds for that. So I’m not averse to taking meds but I continue to baulk at these that seem counterproductive.

[CallMeSunny]

Whilst you wait for your Rheumy department to get back to you you might like to look at the Royal Osteoporosis website (also for anyone with osteopenia), perhaps phone their very helpful helpline too. Are you able to email your Rheumy to ask your specific questions, also your GP: that way they can look at your notes etc before they make contact with you with (hopefully) answers.

[Knip in reply to CallMeSunny]

Thank you CMS. I will definitely look on the website! I had no idea it existed. Great idea about the email to RA, but sadly can't email GP. They don't have that facility. I could drop in a written note. However, it was Rheumatology who told them to issue it to me. It appears that our pharmacist is now in the 'monitoring of drugs position' because he said he will check up with me after two weeks of taking it, not the GP!

[MyStar86]

contact your gastro because they will not want you to take it with Crohn’s disease!!!! My gastro advised the Zoledronic acid infusions as they don’t go through digestive system and it’s just one infusion a year…..however I have bad osteoporosis I’ve never heard of meds for osteopenia. Please tell your gastro!!!

[Knip in reply to MyStar86]

Thank you for that, My Star 86. I had thought as much. It beggars belief that one could be put on a drug such as this without a discussion of the pros and cons regarding it, looked at from EVERY angle! Health Unlocked is such a great site because we can obtain information from people who REALLY know about things from a patient's perspective. Appreciate your reply. Knip.

[MyStar86 in reply to Knip]

Don’t worry I am happy to help and always here if you have any other questions 😊. Your gastro is the best one to advise but definitely don’t have the tablets save you any more issues on the crohns side. Take care and best of luck keep us posted how you get on. Big hugs

[Knip in reply to MyStar86]

Thank you. Your reply has given me the courage to courage to stand my ground. Gentle hugs coming right back to you. 😘

[MyStar86 in reply to Knip]

Definitely we have to be our advocate these days which is unfair but it’s the only way to get the help that we need. Terrible they even suggested it to you I’m shocked. Good luck keep strong 💪🏻

[Sowen59]

Hi Knip

I would be very careful….. I was prescribed AA which I stupidly thought well doctors know best….. I had a massive reaction to AA….lost over a stone in weight couldn’t eat lost 3 teeth, jaw became loose, had difficulty standing moving was just so ill and after only 6 weeks of AA. Get as much info as you can first…. Then when I was nearly recovered ie eating and walking again, they said I could have prolia infusions. No I said not going through that again. Had my Hypothyroidism op… blocked tumour removed. Started to walk and do light excersies, took up swimming.

I went self medicating route, drank a full pint of full fat milk, 2 eggs, lots of youghert and anything that aided calcium and magnesium absorption every day!! Took acal d3 grabbed plenty of sunshine !! Now nearly 2 years post op….back at work 3 days a week and my severe osteoporosis is reversed to osteopenia…..Result for me😀😀 I am Nearly 65 now and feel like I have been given a second chance. Check what is suitable for you. AA as a drug is banned in many countries!!! Ask for an alternative medication. Good Luck.

[Knip in reply to Sowen59]

Hi Sowen, Thank you for your reply. Your experience is even worse than I was expecting. You have done really well to get back to good health. I am dairy free due to Chron's but the Alpro milk I have contains the same calcium content as dairy milk, so it is a good substitute. I think AA is the kind of drug that should to be discussed with the patient before it is prescribed. I have emailed them (it takes up to eight days for a response, the same as after leaving a phone message) saying that I am withholding it until I know their reasoning. I am not grumbling about the time it takes, they are very busy, and normally a very good department. Your much appreciated post has made me feel much better about not wanting to take it. Thank you again, Knip.

[Haz58]

All I can say is my GP put me in Calcichew D3 twice a day when I had a vertabrae compression fracture last year. I have osteopenia, RA and osteoarthritis. All the best. Xx

[MWZ3 in reply to Haz58]

I wonder if the arthritis caused the fracture?

[Haz58 in reply to MWZ3]

Possibly, I also have degenerative disc disease. I don't have a clue how I did it either.

[Knip]

Thank you Hazel. Yes, like you, I am prescribed Calichew D3. To my knowledge I haven't had a fracture since I was a child, when I had my arm broken three times. I am waiting for a response from Rheumatology as to their why they feel I need it. Take care, Knip.

[Cheeseand]

I have ostopenia and take Alendronic Acid. My scores are relatively good except for femur which another point would mean osteoporosis. I take the tablets which dissolve in water couldn’t swallow the other ones very well. Don’t seem to have any obvious side effects..hope you get sorted

[Knip]

Thank you Cheeseand. I'm glad it works for you. Take care.

[josephinius1]

I feel your pain. You already have a body that has clearly stated it over-responds to things. (That's how I see autoimmune issues, which I have as well, though not as deeply as you do.) People act all, "Why are you scared?" and I'm like, "Have YOU dealt with an immune system that seems to be on a perpetual seek and destroy mission? Have you teetered on the 'just okay, but we're grateful for that,' scale, knowing anything might slide you right off into an upper ring of hell at any moment?" I never intended my life to be about managing affliction, yet now I have added (in my case) very severe osteoporosis (in my case, multiple fractures already on deck,) to my list, and, what do you know, it's very likely associated with my autoimmune disorder? And you never ever once clued me in to this possibility? So, now I'm supposed to just blindly trust you when y'all didn't pick up on cues that my body was literally--and predictably--breaking, and take your meds that you can't even assure me will be effective? And then you mock me? Diminish me?

I get that doctors are human, and maybe especially since covid, overworked. I get that they probably really do want to help and unfortunately, chronic/autoimmune conditions are difficult to treat, and they want to spend their energies where they can actually DO something. I get that in the US, at least, avoiding litigation is a high priority, yet insurance can make offering one's best challenging. I get all that. Just don't diss me for feeling cautious. We're hardly in an ideal situation here.

[Knip in reply to josephinius1]

Gosh, you really are going through, and have been going through for some time, the mill, Josephinius! My heart goes out to you. You have every reason to be cautious...and I agree with you in the way that we can seem to be feeble when we do question and don't just trust, without others knowing the facts as to why we are like that. A friend of mine, who is really incapacitated by RA, said that when people ask how you are they just want you to say, OK, and then move on. Of course, those who care and understand will say something along the lines of 'You're OK are you, right, now tell me how you REALLY are'. I hope that you have some supportive friends or relatives who fall into the latter category. This is the place, without question, where we can vent our feelings and others WILL care and understand. Take care, Knip.