Ostoporosis

[Tommylover]

Was diagnosed with osteoporosis in October my T score was-2.5 . Also got other health issues so am scared of taking drug treatments. I can’t take alendronic acid as I have bad gum disease. I’m on vitamin Dand calcium doing exercise and trying to eat healthy. I’ve researched all the drugs and all have terrible side effects . Got to see my GP after Christmas been referred to a reumatologist but long waiting list . Feel very frightened don’t want to get any fractures being very careful. Anyone else unsure about the drug treatment?

[Lopera]

You have to weigh up your attitude to risk. I’m not sure what the terrible side effects are but the risk is compression fractures, kyphosis, other broken bones. There are plenty of articles on YouTube about reversing osteoporosis with supplements, diet and exercise.

Unfortunately I had the compression fractures before discovering I had osteoporosis. Just got my dexa scan results and my spine is -2.8 and I already have 6 compression fractures. Sorry to sound so gloomy but I’m going to take the meds.

[Tommylover in reply to Lopera]

Thanks for your reply . Going to discuss with my doctor after Christmas .

[Lopera in reply to Tommylover]

If it’s the jaw necrosis thing you are worried about, I recommend watching the ROS video about it.

[Tommylover in reply to Lopera]

ok thanks

[tangocharlie in reply to Lopera]

Me too. I thought I was OK as my DEXA scans were normal but I still got compression fractures which I'm now stuck with for life.

[Sheena2020 in reply to Lopera]

I was just diagnosed with osteoporosis as well. My hip t-score is -2.5. I have an appointment with an endocrinologist in March.

My obgyn prescribed Boniva. I took it once and had an allergic reaction. I am also scared to take the osteoporosis meds because of their side effects, and the fact I am also on Hydroxyurea for blood cancer.

I have been making sure I get between 1200-1500 mg of calcium a day (food and supplements). I am also taking vitamin D and exercising. I know this won’t improve the t-score, but I wonder if we can keep it from getting worse. I know the doctor is going to insist on the meds.

Maybe we can compare what our doctors say after our appointments. Let’s keep in touch.

[Rooruby in reply to Lopera]

Hi I was the same took nothing for 8 years then t score ended up at -4.7. It is so scary I agree I kept fit and healthy but decided to start Alendronic Acid to avoid fractures sadly to late ended up with fracture in spine suspected fractures in other places to. I also ha e scoliosis Kyphosis fibromyalgia and widespread arthritis. My rheumatologist said I was unlucky to have all this. After the fracture which was Sept 23 still now not healed and .y life has changed so much due to pain. I'm no longer fit and healthy as I was although starting to get there. I'm now taking a daily injection teriparatide to try help build some bone as spine is crumbling. My advice is to discuss the Alendronic Acid infusion 1 yearly I section. I totally understand your fears about jaw issues but it is very rare and you obviously are like me and look and all the worst side effects rather than the positive. Good luck I hope you decide what's best for you and also ring the nurses at ROS they are the ones that truly helped me

[Tommylover in reply to Rooruby]

Thanks for your reply I rang the nurses and I’ll discuss with my doctor

[tangocharlie]

Give the ROS Helpline nurses a call and talk things through with them - they're so knowledgeable and kind

[Tommylover in reply to tangocharlie]

Thanks I’ve spoken to them they said to talk with my doctor he wants to see me after Christmas

[Granniebythesea in reply to tangocharlie]

👍👍 I was just about to make this comment - the ROS specialist nurse definitely helped me when I called them. Plus all the webinars with experts on their website.

[Tommylover in reply to Granniebythesea]

Thanks for your advice

[RalphyDog]

Hi Tommylover, I was diagnosed with Osteoporosis in November following a Dexa Scan. I have a score of -2.7. My GP prescribed a high dose of VitD & Calcium. I cannot take the normal oral medication because of a hiatus hernia and I have problems swallowing tablets, so like you my GP has referred me to a Rheumatologist for injections . I am a bit nervous of the medication, but happy to see a professional to discuss. In the meantime, I will continue with my gym work and my walking until I see someone. If the Rheumatologist says that is the best way forward, then I will certainly give them a try.

[Tommylover in reply to RalphyDog]

Thanks I hope I see reumatologist soon as I’m on a big waiting list . Good luck

[MydogBrandy]

hi I couldn’t ake the alendronic acid tablets, they made me sick. I now have the yearly infusion, had two so far, first one I was poorly for a week but after reading helpful advice on this forum the second time I drank 4 bottles of water WHILST the infusion was going in. Great, no side effects at all. My score was -3.5 and I am due to be checked this year so I will update when I do.

Only found out I have osteoporosis after a fall in Tenerife on my last day of my holiday, result new hip!

Good luck everyone. Xx

[Tommylover in reply to MydogBrandy]

My T score dosent look too bad compared to some if I have infusion I’ll drink the water like you and hope for the best .

[Doodlereggie in reply to Tommylover]

That was what I did with infusion.took paracetamol before,drank loads of water during and asked them to do infusion at the slowest rate they were able.evidently the slower the better.having said that I have now 6 monthly injection of denosamab at local g.p. instead of having to travel to hospital,and no side effects at all,just like a flu jab.i am 80 and never had a fracture,so fingers crossed !!worth asking about maybe.good luck.

[Tommylover in reply to Doodlereggie]

Thanks for the info good to know

[RalphyDog in reply to MydogBrandy]

That’s good to know about the water.

[Casper60]

I’ve also refused yearly infusions because of the side effects. I’m on a protein and calcium rich diet and also use weights to do some weight lifting/training to help support my bones because I always prefer the natural way before filling my body with unnatural chemicals.

Good luck whatever you decide.

[Tommylover in reply to Casper60]

Thanks good luck to you maybe the exercising diet and vit d and calcium will stop it from getting worse let’s hope so I don’t want a fracture. But some of these drugs I don’t know how they’ve been approved there’s not a single one without terrible side effects and even on the drugs there’s a chance you can fracture. Not everyone gets a fracture so good luck to all .

[Viking1822]

I can understand how you feel. There are so many alternatives. I hope you have an sympathetic doctor who will listen to your fears. Good luck.

[Tommylover in reply to Viking1822]

My doctor is absolutely lovely he’s very popular and hard to get an appointment with .

[Numptybrain]

I’m on allendronic acid and have loads of other health issues including Serositis which is an autoimmune disease but I’m absolutely fine taking it.

Take care

Wendy xx

[Tommylover in reply to Numptybrain]

Thank you x

[Missus835]

Hi there. Don't like the meds either, but wish my rheumy had been more on the ball with osteoporosis diagnosis and I ended up with 10 compression fractures prior to my first Zoledronic Acid infusion. She misdiagnosed it as osteopenia and then tried to gaslight me into thinking I had misheard her. Yes, there are side effects, but they are rare and the referred pain from the fractures, muscle spasms and kyphosis is unbearable some days. I do not want anymore fractures. Don't let fear hold you back.

[Tommylover in reply to Missus835]

Thanks for your advice

[Vgael]

I had a dexa scan on July 3rd this year. My result came back on October 10th as -2.6. I have been given such sparse and vague information about osteoporosis. I have been advised to take Risedronate 35mg tablet once per week for 5 years, and then get another dexa scan. I am just 54 and a post menopausal female. I have never broken a bone in my life, so I don't understand. I have no fractures showing on my dexa scan that they can see. I take all the vitamins advised like k2 mk7, d3, and also calcium and potassium citrate at the correct dosage. But I am also scared to move in case I do fracture. Information about osteoporosis is very poor, as is advice from gp's. I live in Scotland too. And there's a long wait to see any specialists. I refused alendronic acid because of gum issues and dental issues. But my dentist told me that it's only really infusions that cause jawbone problems and not tablet forms of medications. Still i don't like the situation with it all, and I am worried. No one can give me any good advice that sounds definite and so i am left in limbo. At 54, I don't want to live like this because I also suffer from epilepsy too, and take anti-epilepsy medication. I am just so worried too.

[Tommylover in reply to Vgael]

So sorry about your situation I’m on antidepressants as my life has changed so much in a few monthes . I’m also scared to do much incase I fracture but I think it’s only mainly if you fall . I’m a lot older than you and was fit up to 5 monthes ago now I’ve got loads wrong with me . I lm in two walking groups and do exercise at home and go to a gentle exercise class . I’ve suddenly got problems with my balance and weak legs but the nurse at ros says it’s not the osperosis it could be my back problem got a few things wrong with me . Doctor dosent seem to know why I’m feeling like this . Got to see him after Christmas and he’s referred me to reumatologist but there’s massive waiting list . Good luck .

[RalphyDog]

I know how you all feel about being nervous.

[Ludovic4]

Hi, I'm - 2.7 but really don't want to take the medication. I am on enough fir other issues and the side effects are almost as bad as the health problem! I saw the rheumatologist at the suggestion of the endocrinologist and he was quite unpleasant when I expressed my trepidation about medication - so just be prepared and don't be bullied.

[Tommylover in reply to Ludovic4]

Thanks for your advice I’ve got enough going on with health problems I can’t cope with horrid side effects from these drugs they all have terrible side effects .

[Paris100]

I have been taking alendronic acid for osteoporosis more than 3 years. After my 2 year scan my score had improved which was encouraging. I have had no side effects in that time. I was diagnosed after I requested a dexa scan before starting a cancer drug known to cause bone problems.(Why aren't all women screened after menopause. It would save so much grief and nhs money!).I have not had any fractures but am suspicious that back problems could be caused by osteoporosis in my spine. I too was reticent about the treatment, having read all the horror stories. What changed my mind was a g.p. who said that in 30+ years of prescribing she had never come across anyone with those side effects. She rather bluntly told me that risk of disability through fractures was far more of a risk to me. I have been underwhelmed by the advice and support I have had. I have never seen a rheumatologist. I merely got a letter with my scores, advice to eat food containing calcium and to watch my alcohol intake. As I have heart problems I am not sure about taking calcium supplements as I have read that they can cause plaque. Again I have had no one look at my overall health and implications for treatments. I was already on a high dose of vitamin d, as i was previously found to be deficient. Probably which largely contributed to my bone weakness in the first place. Other vitamins, like k are not recommended for people on blood thinners so i don't take that. I was walking regularly but arthritis has limited that more recently. I have a fear of dental treatment and one of the first things I did was ask my dentist for advice.I had read that you have to stop taking alendronic acid before invasive dental treatment. My young, recently trained dentist said that it was people on the infusion that she worried about and she couldn't see any reason for me not to take the tablets. So I weighed it all up and although I hate having to take medications, this is one I haven't regretted so far. I do forget to take it as it is a once a week pill for me and takes a bit of planning as you can't eat or drink for half an hour either side and must remain upright so there is not danger of drug coming back up the oesophagus. On the other hand a friend of mine decided against the drug. She opted to get a personal trainer and exercises frequently. We compared scores. Hers had gone up too. Exercise and a better diet appears to have improved her health. She fell when running, cuts and bruises- but no broken bones. I don't think fractures are inevitable so try not to let fear limit you. Just be sensible about what you do. Best of luck to all with this wretched condition.

[Verauk]

very unsure about drugs also. However I have started in july with risedronate. Any side effects so far. My T score is worse than yours( -3.2 spine) and following my doctor advise that said I'm too young ( 68) to risk a fracture, I started. My plan is not to take it for more than 2 years.