Said I would update the forum on my progress. One month now on weekly Risedronate after 20 unpleasant months on AA.
The difference is very marked in a good way. No more overwhelming fatigue or sore red eyes! No more Brain Fade! I can operate like a normal human being on Acid Sunday once more and do not feel any need to return to bed!
The only slight side effect is a strange ache in my head and face, almost a tingly numbness which comes on after about an hour and passes after another hour. Not a headache as such just an ache in my facial bones.
Have been reassured by ROS nurse that this should lessen as the weeks go by and it is not a precursor to Osteocronosis!
Will now hopefully complete my three years on Acid then have another Dexa to see how I have done (even if we have to pay for it!)
Have also upped my exercise regime,more weights etc ,with the excellent guidance from the ROS.
Not often people post good news here so hope this helps someone else.
Many thanks to all of you who have given me such good advice and encouragement over the last few months. ❤🌞❤🌞❤
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Pinklady45
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Thank you! Yes Goodbye Prolia! Just had third tablet today, every day 5mg -so far all good. Endocrinologist had mentioned that will do a celiac test in 6 months but otherwise was ok with me having Actonel. Yes no messing around with the Prolia rebound. A bit frightening. While in the young Endocrinologist’s clinic no matter where I looked there was brochure or promotion of Prolia.. anyway set me self on path to recovery as you have and hope yours is going well too!
You might find the once-a-week 35mg Actonel is easier to manage than the daily as you have to stand upright for half an hour after taking any bisphosphonate because of the potential for damage to the oesophagus, then no food for a couple of hours. I hope your endocrinologist explained that! Doing that little routine is less onerous once a week than every day as with the 5mg daily tablet as you'll probably be on Actonel for about 2 years. It all gets to be a bit of a nuisance.
I actually started with the 35mg weekly tablet, but found it gave me side effects (dizziness, blurred vision, headaches, shoulder pain), so I went on to the daily 5mg tablet to kind of ease into risedronate and get used to it. After 2 months, I switched to the weekly tablet without any problems and am still on it.
The other advantage of the weekly tablet is that it’s enteric coated, so isn't absorbed in the stomach. A lot of people seem to have digestive problems like reflux from bisphosphonates, and the EC tablet avoids that as it only gets absorbed once it reaches the bowel.
Another point - Prof Lamy's protocol for getting off Prolia in his research paper "Stopping Denosumab" has only been tested with a weekly, not daily, tablet: researchgate.net/publicatio... See Table 3 (pg7). He uses Alendronate which is stronger. Risedronate is a second choice - more easily tolerated.
Just make sure your endocrinologist or GP orders frequent CTx tests to check that your bone turnover isn't increasing too rapidly. That’s the key. I have them every 2-3 months. In Lamy's protocol, the CTx is tested every 2 months for the first 6 months, then every 3 months.
That’s so good to know because even reading about them I didn’t absorb that info about the coating and I do have a sensitive stomach at times! And yes will then switch over to 35 mg. Will ask for CTx tests and read Lamys Ptotocol. Thanks again so much great advice! So glad your side effects have subsided. Enough to deal with these medications!
Thought I'd give you a quick update on my latest test results as you're on the same journey that I am to get off Prolia safely using the same relay drug.
In early July, the endocrinologist said that I could start cutting down on the Actonel, taking it fortnightly instead of weekly, as my previous three CTx results since March were stable at 630, 710, and 620. I did another CTx on 18 August and my CTx had spiked by 50%, to 930 - shock, horror! I had another appointment with the endo two days ago and she's told me to go back onto Actonel weekly from now until my review appointment with her in November.
So that shows how the bone turnover can be affected without being effectively suppressed by a bisphosphonate. That's not to say that I would be in danger of fracturing vertebrae, but I could be as a spike like that isn't good. Not worth the risk, IMO. It was a bit of a gamble to reduce the dose at this stage as I've only been on Actonel for 17 months now, not the full 24 months which Prof Lamy's protocol stipulates. Irrespective of the time frame, the CTx is the decider. Roll on March 2022!
Hi Arcadia10 How quickly things can change and shows how need to be on top of things with keeping on getting results. One and a half years for you almost and would have thought sufficient too to wean off. Well done getting another CTx test. I’m still on the daily Actonel as hasn’t been causing any trouble with my sometimes sensitive stomach and take it with a glass of water first up and wait for half an hour before any food. But knowing the 35mg has the coating and not absorbed in the stomach will change as soon as script runs out or see Dr or Endocrinologist. Working full time Im not always looking after myself well enough. I’ve ended up recently having a diagnosis of PMR so on prednisolone 10 mg but reducing by 1 mg weekly. I was placed in the position where I did not want to get the more serious condition that can come with PMR left untreated. My new doctor is pretty thorough and I feel like I’m being heard without being judged. Had the parathyroid test done. Came back all good. But haven’t had any bone turnover blood tests. My endocrinologist in June said I should have some investigative test later on for celiac disease but haven’t heard back. It’s a case of always following up yourself isn’t it. So yes hope fingers crossed the prednisolone isn’t robbing the calcium out of the bones. Thanks so much for the reminder, encouragement, will be onto that very soon! Very good to hear you keep monitoring. Sorry if a long reply but hope to come back with a short one once have had the blood test. Take care. Always so good to hear how you are going 💓
Glad to hear that you're not having any adverse effects from the Actonel daily. I found the same when I switched to it after taking two of the weekly which produced side effects. The daily was fine, but just a bit of a hassle standing up for 30 mins every morning, not eating for 2-3 hours, etc. Something to note here - the longer your digestive system doesn't have food in it after taking the uncoated Actonel, the better it is absorbed. With the enteric coated weekly, you can eat before or after taking the tablet. I don't as I want to increase the chances of absorption. I go for a long walk and have brunch or lunch when i get home. It would be more difficult for you to fast for 2-3 hours after taking Actonel as you'd have to leave for work and probably want to have breakfast beforehand, so the EC weekly might suit you better.
Sorry to hear about the PMR. I don't know anything about it other than it causes muscle pain. Yes, prednisolone is not good for osteoporosis, so keep an eye on your bone density. Have an annual DEXA scan if possible. I do, and Medicare has always covered it as up until now I have had an appointment as an outpatient at a hospital and so it's ordered by the endocrinologist in charge. That's all changed now as I have gone to a private endo, but I'm more than happy to pay the small out of pocket fee to make sure everything is going ok with my bones 😊
Great news re the parathyroid test result, but you should also be having a CTx done every 2-3 months as per Prof Lamy's protocol to see how your bone turnover is tracking. I'd push your endocrinologist on this when you see him/her next. Probably best to have a panel of blood tests done a week beforehand so that you can discuss at the appointment.
Yes thanks so much! Missed somehow that better absorption not eating for 2-3 hours. Better for me to have a list in front of me including Prof Lamy’s Protocol so when brain fog forgetfulness comes that will have solid reminders. 😊
Hi - hope all is well with you and that you're now getting your CTx monitored every 2-3 months as per Prof Lamy's protocol. It's really important to do this, but not every doctor seems to recognise that.
I wanted to let you know that Actonel hasn't worked for me in preventing a rebound fracture. I broke my left sacral ala (wing bone of the sacrum in the pelvic area) on 20 September. I contacted Prof Lamy last week and he confirmed that it was a Prolia rebound fracture, said he'd come across many women with a sacral fracture after stopping Prolia. He emphasised that the recommended relay drug is Fosamax (alendronate) and the CTx should be kept below 400 for the 24-month period after stopping Prolia.
In light of this development, I'm switching to Fosamax - with much trepidation, but my CTx is now around 1000, so way too high. You might like to reconsider Actonel yourself with the guidance of your doctor. As my endo says, there is no guarantee that any of these drugs will prevent post-Prolia fractures, but I'm prepared to go up a notch to try to prevent another fracture. I really don't want the IV drugs, though.
Oh So sorry to hear! We can only trust in our best advise to us. It horrible the Prolia isn’t it!! I can’t say myself how much it has effected me as have had a downward spiral. From the time I was in Prolia and had the mild Heath attach with the arrhythmia I had been out on beta blockers statins and blood thinners. I had to argue with doctors after test after test showed my heart functions and arteries were normal. Then I got Polymyalgia Rheumatica and out in prednisolone. 10mg This was in mid to late July I think I had been on preds. I had just had a full health check at the dentist at dentist in late August pleased as I kept immaculate dental hygiene. While still in Actonel two weeks later notice sore gum. It was an infection! On 10th September My tooth had to be pulled out! First tooth ever lost and I must say I shed some tears over that. My endocrinologist said to stop the Actonel. So I bought Garden of Life Bone Build arrhhh it made my stomach feel terrible! The PMR has made me so fatigued and Doctors don’t follow up. I’m wandering if the stopping the bisophonates is worth the lessened risk to have a tooth implant - what I normally would have had straight away instead of now a false tooth - a molar- so noticeable. Or just leaving the matter if the tooth alone and getting back on as you recommend Fosomax. I was just thinking about seeing a Rhematologist as finding had to lift one leg. But better see how CTx is going. I had it done last time at your suggestion and Dr said all fine but didn’t tell me what the number was. I’m just so sorry to hear that you have had a rebound fracture I hope you are not in pain? Let me know how you go. I hadn’t been onto this site as trying to work and managing PMR so was glad to see you had wrote and then sorry you have had this happen. Strength and well wishes to you dear Arcadia10 xx
I'm so sorry to hear that you've been having all these health issues in the past few months and even before when you had the heart issues while you were on Prolia. It must be very worrying for you and it sounds like one thing after the next which gets very wearing. I hope that the heart issues and PMR are now under control on the meds. Not a great place to be, but what else can you do?
Losing your molar to an infection is a concern, apart from the angst of it being your first extraction. I hope your dentist knew that you had been on Prolia and then Actonel at the time of extraction because there can be issues around the wound not healing properly and the bone getting infected because the osteoporosis drugs apparently reduce blood supply to the jaw after several years. You only had two Prolia injections and a couple of months on Actonel, so I'd hope would have a reduced chance of this happening. Importantly, keep an eye on your tooth socket and, if you get any pain or can see that something is not right, see your dentist who will probably refer you to an oral surgeon. Your endo would have told you to stop the Actonel because of the potential for the jawbone not healing. It's probably too soon to consider Fosamax for the same reason.
If you're off the Actonel, then you really should be keeping an even closer watch on your bone turnover as there is nothing to suppress it which can lead to rebound fractures if you're unlucky. The incidence is about 10-15%, so conversely about 85% of it not happening. If your CTx goes up sharply and above 400-600, your endo would have to make a few decisions about whether you should go back on a bisphosphonate or not. Try to get the number and keep a record.
Strangely enough, a few days after I came out of hospital, I broke a molar - my first too! Fortunately it can be crowned and the filling is still intact, so no pain but it just feels a bit weird as one side of the tooth is missing. My endo seemed to think that it might have had to do with the OP drugs, and I have read in this forum of several people losing teeth on Prolia (not sure about Actonel).
I'm not in any great degree of pain now, thanks, although it was excruciating for the first few weeks. I spent a week in hospital for pain control and also because I couldn't sit or stand without pain, so couldn't live at home on my own. Right now it just feels like I've been kicked by a horse in my lower back! I was on crutches for six weeks, now off those, thank heavens. So it's just a matter of time to let it heal. Fingers crossed 🤞 that the Fosamax will prevent any more fractures. It wasn't much fun 😩
Oh my goodness! That all sounded so painful! & still is! Glad you had been well looked after and looking after yourself! A lot of work road to recovery. Yes for me too early going back to bisphosphonates. I have a few crown and lasted well over twenty years. So don’t mind them. I hope you get used to yours. My infection my Dentist tells me was from a split root canal. Whether it was a dodgy one he didn’t say. I suspect it was. I put pressure on tooth by grinding my teeth and the Lower corresponding tooth was filled
a bit high hitting the tooth- that didn’t help. Yes not happy being on Prolia!! I am seeing a Aryuvedic Practitioner next week and get CTx test as well! Yes one thing after the other!! Finger crossed! 🤞🤞
Hello, Your good news is so uplifting and it makes a really welcome change from all the negativity we usually hear.
It is clear from your post that you are feeling so much better in your general health and I am so very pleased for you.
To have something that we are able to tolerate and not give us horrible side effects is something we all are hoping for.
I hope the treatment gives you good results as I am sure it will, with your excersise regime,a good diet, and the general feeling of well being added to it.
Take care, be happy and let us know how you progress in the future.Xx
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