Just beeen diagnosed with osteoporosis but con... - Bone Health

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Just beeen diagnosed with osteoporosis but concerned about side effects of Alendronic Acid- blurred and loss of vision

I am a newbie and have just been diagnosed with osteoporosis (n my neck) and osteopenia in my spine and hip. I have taken my first Alendronic acid (70mg) tablet today. After reading about the side effects I am really concerned about my eye health. I already have an eye disease and understand you can get blurred or loss of vision. When my husband asked my gp about possible side effects she was quite vague and said oh about 1 in a 10,000 get a problem with their jaw and you can get a bit of indigestion. I already have IBS. What are the alternatives? I have doing exercise for years (but not over-exercised) and I eat as healthily as IBS allows me to. But according to my gp if you are very slim and over 50 then you'll probably get osteoporosis.

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Hi, I'm in the same position, I was diagnosed with osteoporosis in the spine this week and GP spoke with me on the phone, she's putting me on AA weekly, told me about indigestion probs that may arise, nothing about eye probs but I've read about those in the internet. I have a lifelong eye condition and I'm blind in one eye, the vision in the other eye is slowly going, GP knows about this, I'm waiting for pharmacy to tell me prescription is ready to be collected but I'm reluctant to start taking it at the moment, as I'd rather investigate other routes to see if it can be improved without drugs

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Hello Jennymary,

I am sorry to hear that you also have also an eye condition also, do you have macular degeneration? I have decided that I am not going to continue taking the Alendronic acid, as once you lose visual acuity, you don't get it back and my gp should know this. I'll have to make another appointment with gp - will you let me know how you get on?

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Hi Truffled, I was born with glaucoma. I'm fourth generation in the family, and unfortunately it flared up after having the cataract done in December 2015, and the hospital I attend didn't sort it out so how I have literally no vision in the eye where I had successful cataract surgery, and in October 2017 was registered blind!!!! At time of writing this the AA isn't showing on my repeat prescription list pharmacy haven't texted me to say there's something ready for me to collect, and I've heard nothing from the hospital, it's only because earlier this year when I got referred for a 5yr follow up scan that I found out about my T scores from 2014, one T scores then was -2.4 and neither hospital or GP practice thought to tell me.

I'll certainly keep posting on this forum as I'm finding out more through this than I am from the NHS.

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Hello Jennymary,

I have found out more about osteoporosis from starting this thread than I Knew before. When I had my first Dexa scan, fifteen years ago, no one told me that I should have another scan in five years time, either at the hospital where I had the bone scan or my gp and I didn't get any follow-up. Let me know what you decide to do about your prescription Jennymary.

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Hi Truffled, I had my first scan in 2014 after successful cancer treatment, the letter I received from the hospital then stated that I was at intermittent risk of fractures, have another scan in 3-5 yrs, after 3 yrs the same hospital which gave that advice rejected the referral so the one this year is the 5 yr follow up and when I visited GP earlier this year she told me my scores from 2014 which no one had told me, so as I've put on this forum for 5 yrs I was going around borderline osteoporosis without knowing about it, with regard the prescription i don't want to start taking anything until I've had a chat with the ROS nurses who will probably know more than GP, as I feel I need more expert advice than GP can give me, and, like you, I'm finding out more from this forum than GP

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I think you both need to have a conversation with your pharmacists because they are likely to know a lot more about the medications than, apparently, your GPs. There are alternatives to the oral bisphosphonates which at least bypass the gut. But I'd have thought possible problems with eyesight for patients who already have compromised vision should have been top of mind when the medication was being considered.

My first question for you is, did you have DXA scans and what were your t-scores?

Were either of you given any advice regarding nutrition and exercise? Sometimes people are prescribed these drugs and in fact they can do other things to minimize fracture risk without resorting to medications, or at least make some lifestyle changes which mean the drugs will work better and you can take them for less time.

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Hello HeronNS,

My gp knows that I have a serious eye condition but I can only think that she might have thought that AA might now effect my vision.

I had a dexa scan, and I thought my gp would have discussed it with it me but she just said I had osteoporosis in my hip, which I don't, I have it in my neck and osteopenia in my spine and hip. The T-score for my neck is -2.9, spine is -2.4 and hip is -1.5. The regions total is -2.4. I did ask about exercise but she didn't say anything either about exercise or diet but she made it seem like it was inevitable that you get osteoporosis if you are very slim and over 50.

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I would check your scores again. It is not usual to have your neck included. More likely it’s your femoral neck ( neck of the femur).

Have a chat with the ROS. Their nurses are very helpful. I’ve been in sodium risedronate for 2 years but due to skin issues , I came off it 6 months ago. I do some exercise but also have started a vitamin D3 regime with magnesium, boron and vitamin K2. Hopefully all this will increase the value of the calcium I get in my diet, and direct it into my bones and prevent things from deteriorating. There’s a very helpful Facebook group called Vitamin D deficiency - Open Doscussion. Worth a look. Good luck.

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Hello trishbindefeld, as a poster on here explained to me it isn't my neck it is the fmoral neck. I personally think my gp could have explained the report to me but hey ho, you have to find out stuff for yourself. I will have a look at the Facebook Group on Vit D, thanks. Is thetreatment you have had sodium risedronate the infusion treatment? good luck to you too

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No sodium risedronate was suggested to me by the ROS as the drug which had least side effects for most people as I was very concerned about the implications of taking any of the drugs. It’s a bisphosphonate just like AA. After two years I’ve decided to try and manage without drugs - they don’t build new bone and the side effects can be quite frightening. Good luck in making your decisions.

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I totally agree I strongly believe there are so many people being given these treatments when they do NOT need them.

It's ridiculous some of the T scores that people are saying they have been given do not warrant being put onto these treatments that could cause more problems than they already have.

In fact some people have mentioned they are in perfectly good health.

Why rock the boat???

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Truffled, that will be osteoporosis in the neck of femur - part of your hip. Don't worry, loads of people misunderstand that. If you think about the scan you had, it would have been of one of your hips (probably just the left one) and your spine. Were you given your t-score and fracture risk, and have you already had a fragility fracture. They're all relevant and you have a right to know your DEXA scan results, not just be told you have osteoporosis, so you might find it helpful to ask your surgery for a print-out of the results. As Heron has said, there are alternatives to AA (risedronate is often gentler on the stomach, or an injection would bypass your gut altogether; or if you're worried about eye issues, it would be worth asking about alternatives to bisphosphonates. The Royal Osteoporosis Society have a very useful helpline with qualified nurses, so before you discuss this further with your GP it might be useful to have a chat with one of them: theros.org.uk.

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Hello Met00,

My gp didn't discuss my report (I have a copy ) with me and I misunderstood the region femoral (neck left) as my neck because it listed my total hip as osteopenia . So thank you very much for explaining that to me. The 10 year fracture risk is major osteoporotic fracture 21% and hip fracture 7.0%.

I haven't had a fragility fracture (to be honest I don't know what that is). About 15 years ago I broke my left foot and then broke my right foot and was diagnosed with having joint hypermobility. I kept spraining my ankles because my ankles kept giving which caused me to fall and break my left then my right metatarsal. I was given physio to strengthen my ankles and legs after that.

I will get ring the helpline, I want to thank both you and HeronNS for giving me such helpful replies - it really has taken a weight of my mind. .

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truffled and Jennymary have a look at this as it contains some suggestions you may find helpful whether or not you proceed with osteoporosis medication. Incidentally, I hope you both know that there is now more information available about another medication called Prolia (denosumab) so I advise you not to take that one if offered as it is implicated in rebound osteoporosis which is worse than the original condition once it is discontinued.

healthunlocked.com/pmrgcauk...

And do follow up the advice to check with the Royal Osteoporosis Society. (For those reading this who are not in the UK there should be an equivalent in your country.)

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Hello HeronNS,

Thanks for your reply. I am going to ring the Royal Osteoporosis Society tomorrow. I will tell them about the medication I have been given and my concerns. I will let you know.

HeronNS are you in the medical profession? or do you have osteoporosis yourself?

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No. I did an awful lot of reading after I was told I had osteoporosis, (I didn't, my doctor misunderstood the summary she was sent). That info is in the link I gave you in a previous post.

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Hello HeronNS, rang the ROS re my eye condition and was advised you can get inflammation, uveitis, in your eyes. I have had two flare-ups of uveitis in the past. The ROS said I should discuss this with my gp, but my gp hasn't been very open to discussing my condition. I have an appointment with the eye hospital next month so I shall ask them if this treatment is suitable for me.

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Hi truffles, I am very interested in what you have been saying. I have Osteoporosis with 4 spinal fractures, I was diagnosed 15 years ago.

Can you please explain where you got the 10 year fracture risk from.

Also would you mind my asking your age.

Your T scores don't seem too bad but without knowing what your age is it is difficult to judge.

My strong believe is that too many peoe are put on these treatments when they do NOT need them.

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There's something called the FRAX index which evaluates various risk factors (age, t-score, pertinent medication like steroids, previous fracture) and comes up with the % likelihood of a fracture in the next ten years - something like that, anyway. I was initially told I had a 10% risk of fracture in ten years (which can also be read as 90% risk that I won't fracture) but once I improved the t-score they dropped the recommendation for medication.

healthline.com/health/frax-...

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Hi Sunseaandsand (I love your name - conjures up the beach) I have a copy of my Dexa Report and under FRAX (WHO Fracture Risk Assessment Tool)\10-year fracture Risk: it states my fracture risk.

I am in my late sixties. I wrongly thought osteoporosis was a condition that came very late in life because I only knew two ladies, in their late 80s, with osteoporosis. I know now younger women get it too. No women in my extended or immediate family have it.

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Hi truffles, Yes I have found by talking to many people that Osteoporosis is a condition that very few people know about.

It does not get the recognition that other conditions get and therefore people are left in ignorance.

Doctors just want to give out prescriptions without any information and are always too busy to answer questions.

I recently was being denied my calcium levels and had to insist I have them.

This was from a sister at the Osteoporosis clinic who did not seem to think I was entitled to them!!!

Please read my journey with Osteoporosis and if you think I may be able to answer any questions you have then please ask.

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Hello Sunseaandsand, do you have a link for me for your journey pls.

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Hi truffled here is the link you asked for.( I hope as I am new on here too!!)

Let me know if you do not get it.

healthunlocked.com/boneheal...

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The figures on the left is the 2014 score, left is this year's, all are minus

Lumbar spine 2.2. 3.0

Right hip. 1.7. 2.0

Right femoral neck 2.1. 2.4

Left hip. 2.0. 2.1

Left femoral neck. 2.4. 2.1

I've never been given any advice/guidance regarding nutrition, exercise and it was earlier this year that I found out how close to osteoporosis I was 5 years ago, not sure how to post a picture with a reply so I'm going to hopefully, post the reply I had 5 years ago which might help you see why I'm so cross/angry/,upset

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Hello Jennymary,

After I had two fractures, 15 years ago, I had a DEX scan and it was normal. I didn't know then that I should have had a bone scan every 5 years, I didn't get any reminder. I have never received any advice from a gp about nutrition or diet. I asked to be referred to a dietitian to be put on the low fodmap diet to help improve\control my IBS symptoms and because I had to cut right back on dairy products I was just advised to take a calcium supplement.

Can you take a copy of the reply with your phone and upload it onto your pc?

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Hello Jennymary, I get where you are coming from because I had my first bone scan 15 years ago and neither the hospital or gp referred me for another bone scan, I didn't know I should have one every 5 years.

I rang the ROS about my eye health and they said you can get inflammation, uveitis, from taking Alendronic acid, as I have had two flare-ups of uveitis in the past I am going to ask the eye hospital on my appointment if I should be taking AA.

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I wouldn't take any of those awful bone meds. They should all be taken off the market in my opinion. I took a couple of the pills and ended up not being able to swallow...and I've read about the side effects for the others...no way! My doctor has prescribed HRT (hormone replacement therapy) for me, because these will build back your bones. I'm 71 and he gave me a prescription anyway! You'll get a lot of good advice on this website for stuff you can do. Do not do these meds. They can ruin your life.

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I have no idea about that drug. My problem was Prolia a 6 month shot with no antidote. If your med is something you can stop if you have trouble -- why not try it

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Hi! From reading the replies, I think perhaps some of the members are in GB. Prolia may have side effect if you are taken off it suddenly...."a rebound" effect? My sister in her mid sixies takes it twice of year in the US with no side effects nor any bone loss in her jaw. She's a beautiful executive enjoying her grandchildren.

I was RX Forteo. Had great results. 12% increase in my bone density WHERE I needed it. Can only take Forteo for various reasons, and the medical school rheumatologist recommended the once a year infusion of Reclast after Forteo was finished. That was in April 2019. I'm doing well with this. If the diagnosis is made for osteopenia or osteoporosis, really, something needs to be done to stop it's progresssion. My sister and I are both in our 60s, but our mother and grandmother had osteoporosis...so we just don't worry about what miught happen if we take one med or another. We knoiw what CAN happen if we take nothing.

We trust our MDs (rheumatoloigists) and eat right and try to get so type of weight bearing exercise...even if it's just walking the dogs...she lives a 1,000 miles from me. Please IF you have a choice, consider Forteo for the 2 years, then look at alternatives to maintaining the improvements Forteo provided.

Best wishes to all for a healthy life.xxx

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I was unable to take tablets so was offered the Reclast infusions l had 2 annual infusions l couldn't have the 3rd as my kidneys deteriated. Good luck

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Am so sorry your kidneys deveoped a problem where you could not have Reclast. Hope an appropriate alternative is being provided to you. Wishes for good health. xx

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Thank you l did have 2 and the bones did improve l have to take vit D3 plus calcium twice a day.

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