I’m going to see my doctor on Wednesday and I have a feeling he’s going to try persuade me to take Alendronic acid. It was recommended for me 2 years ago and but I declined due to the scary side effects I’d read about on here. My latest DEXA scan shows that my bone density has deteriorated more but I still don’t have osteoporosis. Please could someone remind me of the side effects so that I am armed with the correct information
I am concerned about the risk of fractures as my spine is showing the worst deterioration.
I am 59 and was diagnosed 4 and a half years ago. I started on 15mg pred and reduced to zero this summer but symptoms returned so went back on to 5. I have reduced to 3.5 now.
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margiebell4
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There’s a long list of them and I’m not sure what they mean but the worst in my spine is -2.4 and best is-1.9. My hips are between-0.6 and 0. Does that make sense?
Yes. If it were me and on the dose you are one now, I wouldn't take AA. But I am pretty against the stuff. It has a place - just not sure it is for you now.
You got off pred and I assume that it took 2 or 3 months for symptoms to return. I think it is likely you will manage to get to 1 or 2mg at most. Which shouldn't pose much of a risk. But it is your decision.
Gastric ones, hence the strict instructions about taking it and remaining upright for 3/4 hour. Taken for more than a couple of years the risks for microcracks forming in the new bone starts to apply. Many dentists will refuse to do any invasive work, some will do no work on someone taking AA, as healing of the jaw bone may be compromised. As a delaying tactic you could say you want a check to see if any dental work is likely to be required in the forseeable future.
Hi here is an explanation of scores. You can see that you are "normal" in the hip and your spine just borderline. Do you take calcium & vitd3? I would think you could reverse that score with supplements, diet and weight bearing exercise. Tell your Dr to give you a year to reverse and you are only at 3.5mg! Bear in mind you only have to take the meds you want to. You don't answer to the dr for your choices. 🌻
What Your T-score Means. According to the World Health Organization (WHO):
A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.
A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. Examples are T-scores of -1.1, -1.6 and -2.4.
A T-score of -2.5 or below is a diagnosis of osteoporosis. Examples are T-scores of -2.6, -3.3 and -3.9.
The lower a person’s T-score, the lower the bone density.
A T-score of -1.0 is lower than a T-score of 0.5 and a T-score of -3.5 is lower than a T-score of -3.0.
Hi margiebell4, I’m also having bone problems found on dexascan. I have osteopenia and it has gotten worse every time I take the dexascan test. I am classified as osteopenia but it’s getting pretty bad. I get another dexa in December.
I cannot take foxamax (AA) due to clotting issues causing avascular necrosis. So the current plan is to try Prolia, an infusion that increases bone density. Has anyone here tried Prolia and did it work for you?
I have taken lots of prednisone due to autoimmune issues including PMR and GCA.
I’m new to this group and I appreciate any help I can get!
Please ask this question as a new thread - it will be seen by everyone then, not just followers of this one.
By the way - AVN has also recently been found to be an issue with denosumab/Prolia, particularly I think in patients who have been on bisphosphonates previously so it may not apply to you.
This
"Avascular necrosis (AVN) is defined as cellular death of bone components due to interruption of the blood supply; the bone structures then collapse, resulting in pain, loss of joint function and long-term joint damage. ... AVN of the jaw has been described in patients taking bisphosphonates and, more recently, denosumab."
appears in a Medscape article but for some reason I can't get it to download so I can't read it all.
I stopped taking AA after 2.5 years cos my Dad had necrosis of the jaw due to being parked on it for years when he was too old to understand what he was taking. Doc now petering me to take it again but refuses Dexa scan so I am not taking it. I have just had an abscess on a tooth so until my routine check up I have refused to take it telling him I need to ensure I have good oral health.
From my own experience, I had no obvious side-effects from AA. I took it for 5 years as I was on steroids for GCA. I have just had a DEXA scan which showed no deterioration in my bone density at all. My sister, tho’ not a GCA or PMR sufferer, was on steroids but refused to take AA. Towards the end of her life she suffered painful spinal fractures. Anecdotal evidence but, to me, pretty convincing.
My doctor tried to get me to take AA and I kept refusing. They said I had osteoporosis but when I educated myself and understood my numbers, I was between normal and osteopenia. I find the side effects of AA very scary, so this is a personal choice. I decided not to take it. Doctors will prescribe meds because that is what they are trained to do but we must educate ourselves and choose what seems to be best for us. Don't let them persuade you into something you are not comfortable with. Good luck!
I took Alendronic Acid faithfully for 5 years whilst on Pred. After that time my bones still deteriorated. The Rhematologist treating me said that he did not think much of it and so I have had an infusion at the hospital, to stop any further deterioration, and hopefully build up the bone density again. This will be repeated a year later. If your Doc advises to take AA, then I would take it, just to be sure. You can always have a bone density test to see if it is working.
I have my GP, Rheumatologist and Endocrinologist all pushing me to take bone meds. I have osteopenia, but showed slight improvement after four years on prednisone in 2018.
We will be leaving for in a month for our six months in warmer climates away from the Canadian winter and I've agreed to attend a class on osteoporosis and bone meds next year on my return. The class is followed by an appointment with a bone doctor. I'll also have another DEXA at that time.
Various tests done in the past few months, including an MRI last week, show many issues with my back, which I feel are normal aging, wear and tear and likely osteoarthritis, something my Mom suffered with in her later years. I have minor osteoarthritis in my knees and shoulders. No one has even mentioned osteoarthritis in terms of my back, it's all about being on prednisone and needing bone meds. I've yet to see my GP on the results of the MRI, but I'm sure he'll sing the same old tune.
Whatever, I'll park the entire issue until next July.
As others have said Margiebell, we all have to do our own research, make our own choices, and live with the consequences. Doctors can't force us to take medication.
I refused AA because it has aspartame in and that affects me badly. I was offered Ad-Cal instead but Dexa scan was OK so I haven't gone for the ad cal yet. I do take Vitamin D and for efficient excersise I have a Rebounder which NASA uses on astronauts to reverse osteoporosis returning from space. It can be a very gentle session nothing acrobatic and I try to do 3 x 3 minutes a day. I keep my feet on the thing at all times and really miss it if I don't manage to do it.
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