I have just come off Evenity and trying low dose Actonel to keep the gains, (building up hopefully) but at the moment 10 mg a week. I am suffering zig zag horrible migraine (have had 3 of those in the last 2 weeks on Actonel) but it could be withdrawal from the Evenity, not sure.
Has anyone done low dose Actonel and kept their gains (or not lost any bone density) and has anyone had migraine as side effect from Actonel. Would Fosamax be better for migraine?
Thanks
I have a history of migraines but Actonel exacerbated the problem.
Hi I finished Evenity in November 23 and had no after effects. I think its the Actonel that's making you feel bad. I started on Risedronate in march to hopefully keep the bone build up, and have been ok on it.
Thanks for replying. Glad you are doing well on the Actonel, I have only taken 5 mg every 4 days and feel terrible, stiff and achy at night, all my teeth hurt and continuous migraine.
I dont think I want to take another one but dont know what to do instead.
Hi, I take my tablet of 35mg once a week. Your symptoms sound horrendous maybe once a week could be better for you instead of daily. Ask your Gp if you could change to once a week, if still bad you need to try something else. There are lots of other things to try. don't suffer in pain.
Thanks the GP is going to write to the consultant. Hes told me to stop the Actonel and I have asked him to ask for low dose Alendronic Acid building up. I still have a really bad head, its every day but 5 days since the last flashing light migraine and it just continues so I am glad to stop☺️
I'm glad you've stopped, that's no way to live, I hope they find you something that suits you, good luck.
Did your scores improve on Evenity? I received mine today, after 11 months my spine has gone from 4.5 to 3.6 (where I started in 2016) so thats good, the hip gone from -3.0 to -2.7 and the total hip worse gone from -1.8 to 2.4 (I think its because after my last fracture I cant climb the stairs any more. Not bad results seeing as I cant exercise, cant walk far, just good diet and supplements. Now I have to maintain it, this is going to be the problem.
Hi, yes my scores improved on Evenity. It's a shame it wasn't approved by NICE in 2020 (covid put it on hold) when it 1st came available here as my scores would have been even better. My spine went from -3.8 to -2.2 ( Osteopenia), hip -2.10 to -2.00 so I'm pleased. though not as good as 2013 when I had been taking strontium ranelate for 3 years ( no longer available here). as scores then spine -1.7 and hip -1.3. Well done to you for getting good scores on diet, meds and not exercise, hopefully they can find a bisphosphonate or something that agrees with you to keep the scores at that level. good luck.
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