Does anyone have osteoporosis? - Page 2

Witchy Woman · ‎03-15-2010

My endocronolgist prescribed Fosimax.

It was a once a week pill. After three weeks, the pain in my hips was so bad I couldn't turn over at night.

Stopped taking them, and was fine after about a month! Told her I wasn't taking any more mediction for this.

Cannot understand why I have it....as I ran high mileage daily for MANY years, then walked, now spin and lift weights.

Whatever is wrong is just going to have to stay that way. The pain from this medication was terrible, and I used to deal with migraines.

I've been lazy about doing any further research and just chosing to ignore it for now.

Meowingkitty · ‎06-19-2010

My aunt took Fosamax and ended up in the hospital for days. Sick as a dog. I have a Dexa scan next week and I seriously doubt that if suggested I will take pharma drugs. I've known far to many people who have had bad reactions.

agb80 · ‎10-16-2020

@SilleeMee wrote:
I was diagnosed with op about twenty years ago. I was given a Rx for high-dose vit D plus I got a single dose of the once-yearly Zometa infusion.

Then I had another dexascan the following year which showed I was still with op despite the Zometa. What happened next was not good. I developed a bone tumor on my cervical spine which involved my entire neck. The pain was unbearable until after a 13-hour surgery where now I have an entire fake neck with screws and fake bones. The cause of the tumor was never determined but I was advised by three different doctors not to get another dose of Zometa. Apparently there might be a link to that and the tumor...no one could give me a definitive answer. Some of you may know my story about my neck surgery and how much pain I went through before the surgery. I was suicidal from the pain....yes it was that bad for many months.

I have since been taking regular doses of vit D. I consistently exercise including resistance training. I also take a daily dose of silica supplement. All that and now I have managed to show a normal dexascan.

Interesting read regarding op, bone health and silica (silicon) supps. They work.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658806/

@SilleeMeehow terrible! My mother had the Zometa and had an instant headache and complained about it while the infusion was still ongoing. No one paid any attention. She very much regretted getting it. Have no idea if her breaking her femur a year or so later is any indication of the deleterious affects of that drug. I was recently diagnosed with OP and asked my doctor to go through the list of options, the last being a nasal spray. As soon as I get if filled i will begin for a year one nostril one day and the other nostril the next. After 1 year another dexa scan. I haven't looked up the spray yet to see its side affects. My doctor said doing nothing including taking calcium, magnesium and vit d supplements do not help.

BirkiLady · ‎02-22-2015

@Patriot3 @GoneButNotForgotten I have been on Boniva, Prolia, Forteo and back to Prolia over about 18 years. Never had a problem with any of them (as far as side effects). Have never heard Forteo could be used longer than 24 months.

Following an injury accident and the Forteo use for 18 months, my DEXA scan showed a positive result! My Rheumatologist stopped the expensive ($1,200+ every four weeks) daily injections of Forteo and suggested I return to Prolia (which is covered by Medicare Part D health insurance). Since I had gone through, and past, the donut hole the past two years with Forteo and my other meds, I'm delighted this spring to return to reasonable RX bills.

@Patriot3 You mentioned you were unable to afford the Forteo and your physician is obviously willing to continue it longer than the recommended 24 months. If that is accurate, I have a suggestion: Eli Lilly has a financial help program for those who qualify. IIRC the patient only needs to complete a form requested from Eli Lilly (I just found info for it on-line), include copies of your IRS income for the past year or two (IDK for sure), have your physician sign his approval for the meds and FAX it back to Eli Lilly. From what other patients have told me, it's an easy process and so helpful financial. IIRC the patient cannot have an annual adjusted income of more than $53,000. (Again, that may or may not be correct. IDK. It was heard from other patients talking about their experiences.)

I know how well Forteo works! My Rheumatologist took me off with six months left in the event I ever need to use the recommended dosage again. If so, I'll be happy to give myself those daily injections again for six months if necessary. At present, I'm so pleased to have healthy bones again and able to take Prolia infusions once every six months. Isn't modern medicine wonderful?

I do believe exercise and healthy diet has played a huge part in my recovery from three fractures to my back and another in my left knee following that horrible car accident in December 2018. It will never be the same, but aches are much better than the 24/7 severe pain and homebound for months in a full body brace!

Money screams; wealth whispers.

SilleeMee · ‎05-22-2016

@agb80

Zometa is a bisphosphonate, like many other bone-building drugs, and there are numerous cases of people experiencing fractures after taking them b/c bisphophonates can make bones become brittle and prone to fractures. So, yes, I believe your mother may have suffered the same fate.

vsm · ‎05-08-2010

I have osteoporosis and get a quick injection (not an infusion) of Prolia twice a year. It increased my bone mass significantly. BUT: you must contiue taking it. I stopped after my Dad died and then covid hit, and my next DEXA scan showed marked deterioration. My doctor immediately resumed the Prolia, and I'm grateful for that.

tends2dogs · ‎05-08-2010

@SilleeMee wrote:
@agb80
Zometa is a bisphosphonate, like many other bone-building drugs, and there are numerous cases of people experiencing fractures after taking them b/c bisphophonates can make bones become brittle and prone to fractures. So, yes, I believe your mother may have suffered the same fate.

That is what I found when researching the bone building drugs way back when. Yes, they will build bone, but not good, strong bone.

Fear not Brothers and Sisters! I have read THE BOOK..........we win!!!

arrabella · ‎03-12-2010

@Patriot3 wrote:
Yes, I have it, for years now. It must be 15-20 yrs now. I used Forteo, which was a daily shot. It did work. At first, you could only take it for 2 yrs. I let a yr go by and took it again for 2 yrs.

It was quite expensive and now I'm not able to financially take it anymore. I have tried script pills, but none of them agree w/me. I do take a supplement called Algecal. I don't know if it helps......I think some. I have also had spinal fusion surgery (11 yrs ago) and I don't think that helps either. Surgeon said he was suprised how bad my Osteo was. I also have some arthritis.

Iand don't know what hurts, arthritis or osteo. Altho, I have read that Osteo doesn't hurt unless you fracture a bone, so I don't know.

I have considered the once a yr infusion, but what happens if it doesn't agree w/you? Will you have to live w/it for a whole year? I don't know. I do know it's not fun to live with. Good luck, @GoneButNotForgotten

I have osteo in my hands and they can be very painful. I have to very careful how I use my hands or else the knuckesl swell and the pain level shoots up

AuntG · ‎03-09-2010

No I don't @GoneButNotForgotten but you mentioned it on another thread and I want say I'm sure that was disappointing news. Sounds like there are some options. Maybe even vitamins instead of Rx choices.

vsm · ‎05-08-2010

@BirkiLady wrote:
@Patriot3 @GoneButNotForgotten I have been on Boniva, Prolia, Forteo and back to Prolia over about 18 years. Never had a problem with any of them (as far as side effects). Have never heard Forteo could be used longer than 24 months.

Following an injury accident and the Forteo use for 18 months, my DEXA scan showed a positive result! My Rheumatologist stopped the expensive ($1,200+ every four weeks) daily injections of Forteo and suggested I return to Prolia (which is covered by Medicare Part D health insurance). Since I had gone through, and past, the donut hole the past two years with Forteo and my other meds, I'm delighted this spring to return to reasonable RX bills.

@Patriot3 You mentioned you were unable to afford the Forteo and your physician is obviously willing to continue it longer than the recommended 24 months. If that is accurate, I have a suggestion: Eli Lilly has a financial help program for those who qualify. IIRC the patient only needs to complete a form requested from Eli Lilly (I just found info for it on-line), include copies of your IRS income for the past year or two (IDK for sure), have your physician sign his approval for the meds and FAX it back to Eli Lilly. From what other patients have told me, it's an easy process and so helpful financial. IIRC the patient cannot have an annual adjusted income of more than $53,000. (Again, that may or may not be correct. IDK. It was heard from other patients talking about their experiences.)

I know how well Forteo works! My Rheumatologist took me off with six months left in the event I ever need to use the recommended dosage again. If so, I'll be happy to give myself those daily injections again for six months if necessary. At present, I'm so pleased to have healthy bones again and able to take Prolia infusions once every six months. Isn't modern medicine wonderful?

I do believe exercise and healthy diet has played a huge part in my recovery from three fractures to my back and another in my left knee following that horrible car accident in December 2018. It will never be the same, but aches are much better than the 24/7 severe pain and homebound for months in a full body brace!

Thanks for this excellent post, @BirkiLady . Too many people discount the significance of an ostroporosis diagnosis and don't realize that, once you have it, all the vitamin D and calcium in the world won't stem the progression. By that point, it's simply too late to lay down new bone with vitamins and minerals alone. Any doctor worth his or her salt will tell you that the risks of not taking one of the available meds far exceeds the risks of a fracture -- which, as the disease progresses, can occur even without a fall (in some cases, a strong sneeze or a seemingly easy bend or twist can cause one).

The meds have side effects for some people, but not for others. A sensible man or woman will, with a doctor's advice, keep trying to find one that works for him or her. Osteoporosis is an insidious incapacitator and killer. It's a lot easier and healthier to prevent it from worsening than it is to suffer with bone fractures and the damage they cause to other body structures.