Prolia

• By newgirlmom
• Reply 3187903
• July 5, 2012 at 6:34 pm
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Hello Socalmaria, my doctor today told me I needed to go on Forteo asap. I have severe, severe osteo at -5 in spine. I am 53 and was looking for input on this drug. So, it appears it helped your hips but not spine. How much did it help your hips? Did you have any side effects? Sorry, I cannot help you on your question about Prolia but really would appreciate any input on Forteo. Thank you.

• By taape
• Reply 3188612
• July 6, 2012 at 1:22 am
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I've had two injections of Prolia and I'm getting ready for another one. I'm not sure of any side effects. At first I thought the muscle spasms were from the medication but I guess not. Maybe I'm not having any noticeable side effects, not sure. What I don't like is that I'm not sure if the Prolia is doing me any good.

Sounds like your hip bone density improved so that's good. It seems like it's harder to increase bone density in the spine, maybe from not getting a good blood supply especially at the lower lumbar regions. I think it takes a long time to increase spine bone density. Anyways, it doesn't seem like the medication you took was a total failure with hip improvement and if your spine density didn't get any worse.

• By CleoB
• Reply 3188813
• July 6, 2012 at 6:40 am
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I was offered Prolia earlier this year but after much consideration, decided against it. I had had one infusion of an anti-osteoporosis drug last year (wish I could remember the name!) which gave me very severe pains in my jaw and a nasty eye infection that had me visiting the Eye clinic for a month. So when the 'reminder' about Prolia came in I thought about it very carefully and decided 'No,' the side effects appeared to be similar to the drug last year but also included 'uriniary infections.' Having been prone to cyctisis over ther years, that did it for me! I wonder though, have i done the right thing? I walk a lot, (dog needs it too!) and I like to think this helps. would love to hear other peoples comments.

• By J3
• Reply 3188872
• July 6, 2012 at 7:23 am
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Every so often I like to give my 2 cents about Forteo. I used it for 2 years and it worked. I went from -3.1 to -2.8, but the entire time I was on it I felt "not well." Abdominal pain, mouth pain (teeth, jaw), pain in legs, numbness of my face.

And guess what - the drs said none of this had anything to do with Forteo. When I stopped, the symptoms stopped. Oh, but I ended up with appendeceal cancer. It caused a basketball sized tumer on my ovary and cancer on my omentum. I had an appendectomy, hysterectomy and omentectomy.

The cancer was low grade - everything was removed surgically. I didn't need chemo. I will be monitored (scans, bloodwork) for 5 years.

Ya think maybe the ab pain was a hint something was wrong??

So, I then tried actonel for 4 weeks. Made me cough and I had difficulty swallowing. As soon as I stopped, I was better.

I tried Atelvia for 6 weeks. I had pain all through my abdomen. Sharp pain all the way through to my back. I thought the cancer was back. Even went for another scan sooner than I needed to. Everything was fine. I stopped the atelvia and guess what, I felt better.

Occasionally I will notice that I DON'T have pain in my legs - a reminder that I'm not on Forteo.

I don't know if I wouid use it again. It helped, but I don't know what to do to prevent bone loss again.

Good luck with whatever you decide. It's a difficult choice - a crap shoot.

Jan

• By Pinnipedia
• Reply 3189162
• July 6, 2012 at 9:36 am
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Hi Ladies. I'm a male with Osteoporosis who has been on Forteo for nearly 2-years. Broke my spine a while back and the the MRI revealed not just that fracture, but some older ones. Dexxa showed issues with both my spine and my hips. After the first year of Forteo, the spinal numbers were better but not the hips, although the Doc suggested that could be, "Rotational," meaning the tech did not have me rotate my legs in the exact same position as the previous year's scan. Seems kind of unscientific if you ask me, but heaven forbid they throw in another Dexxa for free just to find out. Yea, that could happen..

I,too, J3 have had considerable leg pain. At first the doctor suggested this was because I, "was making bone." But eventually he and my primary suggested a neurologist, and it seems I have Idopathic Peripheral Neuropathy. I am now on Neurontin in addition to all the other crap, and it does help, and I can function pretty normally, although it involves a pill every eight hours. None of my doctors see a connection between Forteo and the leg pain/restlessness/tingling. The Neurologist thinks its maybe genetic. I am very interested in seeing how this feels after I am off the Forteo. Very sorry to hear of your cancer and other issues.

As for Prolia, that's one of the drugs we have talked about for me to start after the Forteo. Also talked about Reclast. Seems there are lots of horror stories on this discussion board blasting Reclast, and just about all of these meds. Of course, the doctors disagree, although they do finally acknowlege that long term use of any of the biophophonates will affect hip and jaw bones. I have an aunt approaching 90 who has basically lost the use of her jaws for eating after years and years of Fosomax. But, on the other hand, she is still alive and never broke a hip, including a fall just a couple of months ago. This is classic cost vs. benefit.

I do intend to take something after finishing the 2-years of Forteo, but am still searching for the best one. I am interested in hearing other suggestions.

Alan

• By J3
• Reply 3189283 · In reply to 3189162 by Pinnipedia
• July 6, 2012 at 10:13 am
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Believe me - it was my intent to take something after finishing the Forteo. I spent a bucket of money on the stuff and toughed out all the side effects - not to mention the worry about what this crap could be doing to me down the line (didn't have to wait too long to find that out).

But - Reclast is not an option (anyone who follows that drug on this site knows that). 2 of my drs suggested and were surprised when I said no. Bonivia isn't much better.

I tried actonel and atelvia - so how what?

• By Pinnipedia
• Reply 3189394
• July 6, 2012 at 10:55 am
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Yea, tough to do the Reclast thing after what I've read here. But, folks who have no problems rarely post on message boards. The once a year concept is appealing after taking a shot every night for two years. The doctor also mentioned injections of Boniva, but then his tech reminded him that there is some sort of rationing going on with that and they could only serve, like, 3 patients with the Boniva injections. I think they are monthly.

The twice yearly Prolia is tempting. And, I mean, Blythe Danner wouldn't lie, would she?

I was very fortunate in that my insurance company covered all but a monthly $40 copay for the Forteo. I know it could have been a heck of a lot worse.

• By DaphneYoung
• Reply 3189582
• July 6, 2012 at 12:00 pm
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I had one injection of Prolia about 5 months ago. I am due for another one and don't think I will go for it. I am concerned about the side effects and chose Prolia since it is a 6 month dosage and thought that the side effects would be gone by then. They are still here - mainly my immune system is weakened and I have other strange symptoms that I am sure are because of Prolia. Mainly worried about the real ONJ possibilities since some of the side effects are related to my mouth and gums.

• By Smilinglady1
• Reply 3189758 · In reply to 3187903 by newgirlmom
• July 6, 2012 at 1:04 pm
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I'm just finishing my two years of Forteo, so I don't know yet whether it has improved my bones. At one year I had a minimal increment and no loss, so??? I can't say I had significant side effects. My hair is definitely thinner, and my cholesterol levels skyrocketed (on the basis of one test), but there's no proof the Forteo caused that. I'm actually wondering if vitamin d deficiency had significant impact on the seriousness of my osteo, because for a long time I lived in minimally sunny areas and was not taking a d
supplement.

• By DoubleDD
• Reply 3189887
• July 6, 2012 at 1:57 pm
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I am just about to have my 4th Prolia injection. After one year (2 injections) My numbers improved very slightly. My Dr thinks the second year will improve again and may be more. I had an itchy spot on my back for a few months after my first shot, but it went away. I am a lttle nervous about infections, but have not had any problems.

• By SoCalmaria
• Reply 3190499 · In reply to 3187903 by newgirlmom
• July 6, 2012 at 6:33 pm
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Hi newgirlmom,

My hip was in the osteoporosis range and it is now a T score of -2.2. I had no discernible side effects from Forteo but the limitations on travel were difficult. When I first started the Forteo, I had some occasional aches in my shins but that could have been from exercise. But you do have to get used to giving yourself a daily injection.

• By SoCalmaria
• Reply 3190504 · In reply to 3188612 by taape
• July 6, 2012 at 6:36 pm
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To taape,

Thanks for the encouraging words. I guess I need to see the cup as half full. My hips did improve.

• By SoCalmaria
• Reply 3190524 · In reply to 3189639 by dxaguru
• July 6, 2012 at 6:44 pm
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To dxaguru,

Thanks for your knowledgeable advice. I will take something but would feel more comfortable with Reclast than Prolia. However, my doctor recommends Prolia because Fosamax never helped my bone density after ten years of usage. He wants to try something different.

• By SoCalmaria
• Reply 3190689 · In reply to 3189887 by DoubleDD
• July 6, 2012 at 8:22 pm
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To Double DD,

Thanks for the comments regarding your experience with Prolia. If I go forward with it, I hope my experience will be similar.

• By newgirlmom
• Reply 3190873
• July 6, 2012 at 10:10 pm
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Thank you all for all your great fantastic input. I know by sharing and not judging we are all helping each other on our own individual journey through this disease. I feel like I have to do something. I was thinking about everything and being a practical thinker....Since I am only 53 (in my mind I will always be 32). I was thinking that since forteo and sounds like most of other drugs, should we pace ourselves depending on our age and our health? I mean, I would like to pick up my someday grand kids (2 sons, so many girls, so little time, so no plans on either getting married soon) and thinking that probably won't happen for another 10 years. Should I just take vitamins, exercise and eat right while I can and save my body for later to take the drugs I need to keep my bones with consideration to the different side effects and different drugs? Should I take drugs now because I am a high risk of fracture? So confusing....It is like we all need a customized plan according to our life styles and what risks each of us is willing to take.

• By Pinnipedia
• Reply 3191405
• July 7, 2012 at 8:01 am
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Taking vitamins, excercising and eating right is good advice for everyone, certainly. But, those of us with a genetic predisposition for this disease, and it absolutely is a disease, may need to do more. I am a 61 year old man with lots of Osteoporosis in my family history (all women, but most of the men didn't live long enough to get it, it would appear), and when my serious spinal fracture occured, and I received my first spinal MRI, a number of older fractures turned up. I was also measured for the first time in years, and although my wife had joked about me getting smaller (in height. I think) , I really was about 2 1/2 inches shorter than when we were married, and the same size. I bring this up, because she is my age, post-menapausal, has eaten and excercised pretty much the same as me for years, and is every bit as tall as she ever was. In fact, I love milk and she hardly ever drinks any. (She has taken Calcium supplements though) But, her mom never had any issues with Osteoporosis, or any family history of it to my knowledge. None of this, of course, is scientific, but I see this disease as something to face head on, once you have the knowledge (and T-Scores), and to only modify one's diet really isn't going to do it. Of course, as time goes by, these medications will, hopefully, improve and we will know more about them. But, as for Forteo, although I do feel there have been some unwanted side-effects, for the most part, I believe that it has helped me, and I am fracture free for about 3-years now, I can pick up my grandson (although I do it very carefully), and after Forteo, I will probably try the Prolia. Or not... But, NOT taking medication is not a consideration.

• By SoCalmaria
• Reply 3192135 · In reply to 3191405 by Pinnipedia
• July 7, 2012 at 12:55 pm
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To Pinnipedia,

Thank you for your input. I might take Prolia but I am frightened by the side effects. For me, not taking a medication is not a consideration.

• By newgirlmom
• Reply 3192253
• July 7, 2012 at 1:43 pm
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Smily, Did the Forteo help after 2 years? I appreciate your input, please keep me posted. thx.

• By Smilinglady1
• Reply 3192333 · In reply to 3192253 by newgirlmom
• July 7, 2012 at 2:19 pm
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I don't really know yet. At year one I had no additional bone loss and a tiny increment on one site. I've got a month to go and then I'll have another dexa.