patched
01-16-2005, 09:09 PM
Hi,
Has any one had experience with the Iv medicine that you only have to take every 3 months? I've been on Actonel and it is making me very sick and the Fosamax did the samething. I have acid reflux disease and most medicines that I have to take orally cause me stomach problems. I'd appreciate any info. on this.
Thanks,
Pat
Has any one had experience with the Iv medicine that you only have to take every 3 months? I've been on Actonel and it is making me very sick and the Fosamax did the samething. I have acid reflux disease and most medicines that I have to take orally cause me stomach problems. I'd appreciate any info. on this.
Thanks,
Pat
Sponsor
Aleta145
01-17-2005, 11:19 PM
Hi Pat. I'm scheduled to start IV treatment with Zometa on Feb 1. My oncologist is telling me that it's normally an annual treatment, but we're going to try it every six months to start. I haven't been able to find a lot of info because it isn't FDA-approved for the specific treatment of osteoporosis (only for bone cancer), but if you do a Google search using Zometa and osteoporosis in the search box it will bring up some useful articles. Side effects include flu-like symptoms but I'm told they are rare.
______________________
Aleta
Dx Osteoporosis 5/04, age 49
T-Scores: Spine -3.0, Hip: -1.9
Current treatment: Evista
______________________
Aleta
Dx Osteoporosis 5/04, age 49
T-Scores: Spine -3.0, Hip: -1.9
Current treatment: Evista
patched
01-18-2005, 06:55 PM
Hi Aleta,
Thanks for the information about zometa. I will do a google search.
After a few weeks on the zometa please post and let me know if you have any side-effects.
Pat
Thanks for the information about zometa. I will do a google search.
After a few weeks on the zometa please post and let me know if you have any side-effects.
Pat
Aleta145
01-18-2005, 08:28 PM
I will certainly let you know. Just curious: has your doctor offered this treatment to you? I ask because my oncologist says regular doctors don't usually have the equipment to administer it so it isn't an option for them. I also had to get special permission from Blue Cross in order for them to cover it.
SteveCal
01-19-2005, 02:33 PM
I had a zometa infusion about a year ago. It was done at the VA hospital in San Francisco. Unfortunately I was one of the people with bad side effects. Within a day of the infusion I had vomiting, severe pains in my bones, and bad inflammation of the eyes. It lasted about two weeks. My doctor said that she couldn't recommend me getting the infusion again. She reccomends it only one a year. It is a serious drug used for bone cancer treatment and the infusion can only last about ten minutes since it can damage your kidneys.
Maybe because I am male my side effects were different. On my last Cat Scan my bone density increased about ten percent, so it probably did help. My doctor says it stays in you bones for up to five years so I might continue to have improvement.
Good luck -- Steve
Maybe because I am male my side effects were different. On my last Cat Scan my bone density increased about ten percent, so it probably did help. My doctor says it stays in you bones for up to five years so I might continue to have improvement.
Good luck -- Steve
patched
01-19-2005, 09:53 PM
Hi Steve,
Thanks for the info.
I don't know if I would try Zometa after your statement about the vomiting.
I just got over a sinus infection and the doctor put me on Augmentin and about an hour after the first dose I started to vomit and didn't stop for about twenty minutes. I can take pain but nausea and vomiting I can just not handle. I hope that someday they come up with something that has minimal side effects.
Pat
Thanks for the info.
I don't know if I would try Zometa after your statement about the vomiting.
I just got over a sinus infection and the doctor put me on Augmentin and about an hour after the first dose I started to vomit and didn't stop for about twenty minutes. I can take pain but nausea and vomiting I can just not handle. I hope that someday they come up with something that has minimal side effects.
Pat
patched
01-19-2005, 09:57 PM
I will certainly let you know. Just curious: has your doctor offered this treatment to you? I ask because my oncologist says regular doctors don't usually have the equipment to administer it so it isn't an option for them. I also had to get special permission from Blue Cross in order for them to cover it.
Hi Aleta,
My doctor wants me to try Pamidronate. It is administered every 3 months and the procedure takes two to three hours.
Pat
Hi Aleta,
My doctor wants me to try Pamidronate. It is administered every 3 months and the procedure takes two to three hours.
Pat
linlinn
01-20-2005, 01:08 AM
I did the Iv infusion for 5 yrs. It really helped the pain but gave me no new bone mass . The first treatment gave me the flu like feeling and stiffness. After that no bad side effects. It takes about 4hrs. They have now started me on Forteo--which I am very worried about. :wave:
SteveCal
01-21-2005, 03:21 PM
Hi Steve,
Thanks for the info.
I don't know if I would try Zometa after your statement about the vomiting.
I just got over a sinus infection and the doctor put me on Augmentin and about an hour after the first dose I started to vomit and didn't stop for about twenty minutes. I can take pain but nausea and vomiting I can just not handle. I hope that someday they come up with something that has minimal side effects.
Pat
Hi Pat --
Yes I forgot to mention that along with the eye inflammation, my sinuses also also were inflamed too. I also have problems with vomiting. My doctor usually has to give me a shot.
In addition to the zometa infusion, I started on my own a regimen of vitamin and mineral supplements. I tried to convince my Doctor that this might have a lot to do with my improvement in bone mass, but it went in one ear and out the other. It is worth a try if you think it might help. There are many past postings about doing this. I could recommend a book I bought called "Preventing and Reversing Osteoporosis" by Dr. Alan R. Gaby. It is what I used to see what supplements could help. I ordered it from Amazon on the internet.
Steve
Thanks for the info.
I don't know if I would try Zometa after your statement about the vomiting.
I just got over a sinus infection and the doctor put me on Augmentin and about an hour after the first dose I started to vomit and didn't stop for about twenty minutes. I can take pain but nausea and vomiting I can just not handle. I hope that someday they come up with something that has minimal side effects.
Pat
Hi Pat --
Yes I forgot to mention that along with the eye inflammation, my sinuses also also were inflamed too. I also have problems with vomiting. My doctor usually has to give me a shot.
In addition to the zometa infusion, I started on my own a regimen of vitamin and mineral supplements. I tried to convince my Doctor that this might have a lot to do with my improvement in bone mass, but it went in one ear and out the other. It is worth a try if you think it might help. There are many past postings about doing this. I could recommend a book I bought called "Preventing and Reversing Osteoporosis" by Dr. Alan R. Gaby. It is what I used to see what supplements could help. I ordered it from Amazon on the internet.
Steve
suggi
01-21-2005, 04:20 PM
I have no other choice than Zometa also - 36% below fracture level. I am on Evista but bone density keeps going down. When on zometa you can not have a tooth pulled or any invasive dental work done. I just had a tooth out and the bone is not healing right (abcess deep in socket) OS does not think I am a good candidate for the Zometa. Also I am immune suppressed because of Crohn's and allergic to almost all meds, antibiotics, Crohn's meds azacol, etc. and now topical corticosteroids which could include oral Prednisone. Anyway, how can anyone tell if they are going to need a root canal, etc. sometime during the year of the Zometa infusion. Apparently, the bone does not heal and the skin over it does not grow together. Even grafting is a problem. I am afraid to get it and even though I had a mastectomy for DCIS and was taken off HRT (that kept my bones good) I may take the chance of going back on it and risk getting the breast cancer back. It seems like a better option than ending up in a wheelchair which is where I am headed. Good luck with the infusion!!!!!
suggi
01-21-2005, 04:31 PM
Hi - I can't take any meds anymore either. I am on Evista now and still went down another 3% in July to a total of 36% below fracture level. Zometa is a bad drug I was thinking of getting but besides the danger of kidney failure you can not have any invasive dental work done. If you have a tooth out the bone won't heal and the skin doesn't grow over. Even grafting doesn't work in most cases. How do you know if you may need a root canal or something done. I think my only option is to go back to HRT despite the fact that I had a mastectomy for DCIS and with breast cancer they took me off the HRT which kept my bones good despite the fact I was on Prednisone for 10 months. I have to weight the option of maybe getting the breast cancer back or being in a wheelchair. I do not like the thought of being an invalid. I know the HRT won't make my bones better but at least will keep them from getting worse until another drug comes along that I may be able to take. Who knows how far down I am now. I was told if I did get the infusion it would have to be in a big hospital in Boston as I am considered high risk (immune comprimised from Crohn's and have a long list of allergies to meds.
Good luck with the infusion. I hope you have luck with it but I am too afraid.
Good luck with the infusion. I hope you have luck with it but I am too afraid.
Aleta145
01-21-2005, 08:31 PM
Now you've got me scared, Suggi. I am also a breast cancer survivor. I was on birth control pills most of my adult life, right up until my cancer Dx 5 years ago. I always thought my bones were protected. After my treatment I went on Tamoxifen, which is also supposed to protect the bones. So now it's been 5 years and they ordered the DEXA scan as a prelude to putting me on aromatase inhibitors, which cause bone loss. That's how we discovered I had osteoporosis. So even though I'm on Evista now, my oncologist is pushing the Zometa, and I have an appointment Feb 1st for the first infusion. He said side effects are very rare, and include flu symptoms and kidney damage. Considering the fact that I got cancer against all odds (no breast cancer in my immediate family and no other risk factors except for the BC pills) and now I have osteoporosis against all odds (again, no risk factors except for being female), I'm starting to look at the possibility of renal failure and osteonecrosis of the jaw and I'm thinking, "Do I really want to play these odds?"
I might just cancel that appointment.
I might just cancel that appointment.
suggi
01-22-2005, 05:30 PM
Aleta I'm sorry I didn't mean to scare you, I just wanted you to know the rest you are not being told. I did a lot of research on the internet on it besides what the oral surgeon told me and my Endocrhronoligist being a bit hesitant to even get it done at his hospital if I did get it. Again, I am immune comprimised and that is another reason he is hesitant - and have a lot of drug related allergies. He is the one who told me about the jawbone thing. Said you would have to wait at least 6 months after the infustion for any invasive dental work but you could get the osteonecrosis even without apparently from what I read. I hope they come out with a new drug soon. I live in Massachusetts so I am afraid to go out when it is bad underfoot which is almost all the time lately. I have my last visit with the surgeon next week and I bet she won't let me back on the HRT but my bones are going to be dust if I keep on this way according to my wonderful Endo. I had my mastectomy 2 1/2 years ago and opted not to take the Tamoxifen. The Evista is Raloxifen or something, sister to Tamoxifen and they were looking into that to help prevent the return of breast cancer but I still don't know what they found out. The whole thing is scary and I have had one thing after another and just can't face the Zometa prospects. I just pray something new comes along soon. I guess it is my body so if the surgeon and the oncologist who I see next month say no I figure I will have to make my own call on it and get the Prempro from my PCP or something. Congrats to you for the 5 year mark!!! Breast cancer and osteo do not run in my family either........ :yawn:
suggi
01-22-2005, 06:42 PM
Aleta - me again. Please keep posting. We want to know what you decide and if you do how it goes. I just feel the health care system is letting those down with multiple health problems. It is for the healthy with simple problems. Most of the time you can't see your PCP, only the nurse practitioner. Ask her a question and she says - I don't know, I'm not a doctor...........For most things, NP's are great but it is hard like I say when there are multiple problems. Again, good luck in your decision. It is just too bad that we have to do our own research because we are only told half the truth or maybe the doctors aren't aware of everything about every drug. It wouldn't be so bad if Zometa only caused "kidney disease" -- it's the fact that it is kidney failure it can cause and that means dialysis for the rest of your life. That's another thing that scares me away besides the osteonecrosis. I guess it hasn't been approved yet because as my Endo put it "those that are on Zometa only have a short life expectancy anyway" so maybe he meant what have they got to lose by getting the infusion. If it works with no complications, great - if it doesn't and they get complications -------------. I think that was very cold of him anyway. However, it seems it has helped some with osteoporosis so again, good luck.
Aleta145
02-03-2005, 02:35 PM
Hi Suggi, I just noticed your last post which for some reason didn't show up as a bolded thread so I totally missed it.
Anyway, I cancelled my appointment for the infusion, not only because of what you mentioned but also because I wanted to do more reading on the subject. So I ordered The Myth of Osteoporosis by Gillian Sanson and read it last week. Boy, did it open my eyes! I feel much less panic and confusion than before and have learned so much about osteoporosis diagnosis and treatments. For instance, I learned that I could have a scan done on another machine and possibly be considered "normal", because there's no international standard for calibration of those machines. Each company sets their "normal" standards based on different populations. So how many women are being diagnosed based on faulty readings? The other thing is that nobody knows what are the long-term effects of treatment with biphosphonates because they haven't been around long enough. Many women are being treated for a disease they may never have, with a drug for which long-term side effects are unknown. THAT scares me.
I am hesitant to treat a condition for which I have no symptoms other than low bone mineral density. If I had compression fractures in my spine, that would be different. And I am not trying to talk anyone out of taking Fosamax. My husband takes it, but his numbers are way worse than mine and he has other risk factors.
For now, I'm just going to take preventive measures against the disease. I'm taking 500 mg. of calcium with D, and 250 mg of magnesium, 3 times a day as well as my regular multivitamin. I'm jogging a mile every morning and doing weights 3 times a week, and I've cut way down on both my coffee and alcohol consumption. I haven't smoked in 10 years and was a light smoker when I did smoke. I'm also improving my diet. We'll see if any of this has any effect when I get my second scan this coming May. I'll consider treatment ONLY if my numbers get worse.
Anyway, I cancelled my appointment for the infusion, not only because of what you mentioned but also because I wanted to do more reading on the subject. So I ordered The Myth of Osteoporosis by Gillian Sanson and read it last week. Boy, did it open my eyes! I feel much less panic and confusion than before and have learned so much about osteoporosis diagnosis and treatments. For instance, I learned that I could have a scan done on another machine and possibly be considered "normal", because there's no international standard for calibration of those machines. Each company sets their "normal" standards based on different populations. So how many women are being diagnosed based on faulty readings? The other thing is that nobody knows what are the long-term effects of treatment with biphosphonates because they haven't been around long enough. Many women are being treated for a disease they may never have, with a drug for which long-term side effects are unknown. THAT scares me.
I am hesitant to treat a condition for which I have no symptoms other than low bone mineral density. If I had compression fractures in my spine, that would be different. And I am not trying to talk anyone out of taking Fosamax. My husband takes it, but his numbers are way worse than mine and he has other risk factors.
For now, I'm just going to take preventive measures against the disease. I'm taking 500 mg. of calcium with D, and 250 mg of magnesium, 3 times a day as well as my regular multivitamin. I'm jogging a mile every morning and doing weights 3 times a week, and I've cut way down on both my coffee and alcohol consumption. I haven't smoked in 10 years and was a light smoker when I did smoke. I'm also improving my diet. We'll see if any of this has any effect when I get my second scan this coming May. I'll consider treatment ONLY if my numbers get worse.
suggi
02-16-2005, 11:16 AM
Aleta
I went to another endo and guess what. She wants to be more aggressive. Gave me liquid Fosamax which I just know will kill my stomach....the gatritis is really bad even with all the anti acid meds I am on. Seeing my gastro doc Friday. She said if I can't take it she wants to put me on Pamidronate IV every 3 months. I DON'T THINK SO. With my osteoarthritis of the jaw joint and bad healing of last tooth I don't want the osteonecrosis. I still need that other tooth out - upper crowned, root canaled with roots in sinuses and I'm scared of that even. She did say the Evista is just not doing anything though. I still want to get the HRT somewhere. I did post the new drugs I found that have not been approved yet and a couple sound a little better. I hope they are approved soon. Good luck to you and your husband. How is the Fosamax affecting him? Does he have any stomach problems. My husband said I have to at least try a dose but it only comes in the weekly dose in the liquid and I wouldn't want a problem for a week especially since I am also allergic to most drugs. Who knows......and if you don't look out for yourself no one else is going to. I am sure you found that out yourself.
Take care.
Suggi
I went to another endo and guess what. She wants to be more aggressive. Gave me liquid Fosamax which I just know will kill my stomach....the gatritis is really bad even with all the anti acid meds I am on. Seeing my gastro doc Friday. She said if I can't take it she wants to put me on Pamidronate IV every 3 months. I DON'T THINK SO. With my osteoarthritis of the jaw joint and bad healing of last tooth I don't want the osteonecrosis. I still need that other tooth out - upper crowned, root canaled with roots in sinuses and I'm scared of that even. She did say the Evista is just not doing anything though. I still want to get the HRT somewhere. I did post the new drugs I found that have not been approved yet and a couple sound a little better. I hope they are approved soon. Good luck to you and your husband. How is the Fosamax affecting him? Does he have any stomach problems. My husband said I have to at least try a dose but it only comes in the weekly dose in the liquid and I wouldn't want a problem for a week especially since I am also allergic to most drugs. Who knows......and if you don't look out for yourself no one else is going to. I am sure you found that out yourself.
Take care.
Suggi
Aleta145
02-16-2005, 02:42 PM
Aleta
I went to another endo and guess what. She wants to be more aggressive. Gave me liquid Fosamax which I just know will kill my stomach....the gatritis is really bad even with all the anti acid meds I am on. Seeing my gastro doc Friday. She said if I can't take it she wants to put me on Pamidronate IV every 3 months. I DON'T THINK SO. With my osteoarthritis of the jaw joint and bad healing of last tooth I don't want the osteonecrosis. I still need that other tooth out - upper crowned, root canaled with roots in sinuses and I'm scared of that even. She did say the Evista is just not doing anything though. I still want to get the HRT somewhere. I did post the new drugs I found that have not been approved yet and a couple sound a little better. I hope they are approved soon. Good luck to you and your husband. How is the Fosamax affecting him? Does he have any stomach problems. My husband said I have to at least try a dose but it only comes in the weekly dose in the liquid and I wouldn't want a problem for a week especially since I am also allergic to most drugs. Who knows......and if you don't look out for yourself no one else is going to. I am sure you found that out yourself.
Take care.
Suggi
Hi Suggi, I'm so sorry you have such troublesome complications. From what I've read (and this info was dated Dec. 2004 so it's pretty fresh) osteonecrosis of the jaw occurs in an estimated 1 person per 10,000 taking IV biphosphonates. I don't know if this makes you feel any better about it, but of those who take it, most are being treated for cancer which means they have also had chemotherapy, radiation therapy and/or corticosteroid therapy. They aren't sure what (if any) impact those therapies may have when combined with zolendronate (Zometa) or pamidronate (Aredia). If you're going to have that tooth pulled, you need to do it before getting started on IV biphosphonates.
My husband hasn't had any problems in his 5 years taking Fosamax, although I suspect his dry eyes may be traced back to it. He had good results the first year he took it, but lately his results have been erratic. I'd like to see him go off it completely. He's seeing a new endocrinologist on March 3 to check him out. If he likes him I might go there also. If he recommends Zometa for me I might consider it again, but I need more proof that I have fragile bones. There are plenty of people with low BMD who never get fractures, and people with normal BMD who DO fracture. I'm just not convinced that bone density has anything to do with bone strength.
I don't know anything about the new drugs you posted about below. I feel comfortable taking SERMs because they address both of my health issues in one pill. I just don't know how well it's working yet. I've only been taking Evista for 4 months. Since I'm 49 and peri-menopausal I don't even know if it will work at all, but it's supposedly better than continuing tamoxifen. I'm due for my 2nd DEXA in May. I can't wait to see my new scores.
I went to another endo and guess what. She wants to be more aggressive. Gave me liquid Fosamax which I just know will kill my stomach....the gatritis is really bad even with all the anti acid meds I am on. Seeing my gastro doc Friday. She said if I can't take it she wants to put me on Pamidronate IV every 3 months. I DON'T THINK SO. With my osteoarthritis of the jaw joint and bad healing of last tooth I don't want the osteonecrosis. I still need that other tooth out - upper crowned, root canaled with roots in sinuses and I'm scared of that even. She did say the Evista is just not doing anything though. I still want to get the HRT somewhere. I did post the new drugs I found that have not been approved yet and a couple sound a little better. I hope they are approved soon. Good luck to you and your husband. How is the Fosamax affecting him? Does he have any stomach problems. My husband said I have to at least try a dose but it only comes in the weekly dose in the liquid and I wouldn't want a problem for a week especially since I am also allergic to most drugs. Who knows......and if you don't look out for yourself no one else is going to. I am sure you found that out yourself.
Take care.
Suggi
Hi Suggi, I'm so sorry you have such troublesome complications. From what I've read (and this info was dated Dec. 2004 so it's pretty fresh) osteonecrosis of the jaw occurs in an estimated 1 person per 10,000 taking IV biphosphonates. I don't know if this makes you feel any better about it, but of those who take it, most are being treated for cancer which means they have also had chemotherapy, radiation therapy and/or corticosteroid therapy. They aren't sure what (if any) impact those therapies may have when combined with zolendronate (Zometa) or pamidronate (Aredia). If you're going to have that tooth pulled, you need to do it before getting started on IV biphosphonates.
My husband hasn't had any problems in his 5 years taking Fosamax, although I suspect his dry eyes may be traced back to it. He had good results the first year he took it, but lately his results have been erratic. I'd like to see him go off it completely. He's seeing a new endocrinologist on March 3 to check him out. If he likes him I might go there also. If he recommends Zometa for me I might consider it again, but I need more proof that I have fragile bones. There are plenty of people with low BMD who never get fractures, and people with normal BMD who DO fracture. I'm just not convinced that bone density has anything to do with bone strength.
I don't know anything about the new drugs you posted about below. I feel comfortable taking SERMs because they address both of my health issues in one pill. I just don't know how well it's working yet. I've only been taking Evista for 4 months. Since I'm 49 and peri-menopausal I don't even know if it will work at all, but it's supposedly better than continuing tamoxifen. I'm due for my 2nd DEXA in May. I can't wait to see my new scores.
Linni
02-16-2005, 03:30 PM
Aleta145,
your story sounds like mine.I have no other symptoms other than low bone density. I was so shocked when I was initially diagnosed 2 1/2 years ago. I have never smoked, I'm large boned, have always exercised and eaten healthy, and five years ago added weights to my regimen. I was on Fosamax for 2 years, and my last bone density test was lower than my first.
When I went in for that second test the technician took my height - I have not lost one inch, but she also said - in a rather condescending tone of voice, "I see you've lost weight." Well, yeah - and I was quite proud of that! I did it through healthy eating. But she was looking at me like this was a bad thing.
At my last dr's appointment I told my doctor that I was off Fosamax - because of muscle aches in my legs which are at times unbearable. She told me I shouldn't have done that - and that maybe in the spring - when I came in for my next checkup - she wants to put me on Evista. Everything I've ever read about that drug scares me.
But, I feel like this is my body, and I want to make my own choices. I don't want dr's dictating to me, nor technicians eyeing me warily because I suddenly decided to eat healthfully - and as a result lost weight. (Let me tell you - I am not underweight!)
Linni
your story sounds like mine.I have no other symptoms other than low bone density. I was so shocked when I was initially diagnosed 2 1/2 years ago. I have never smoked, I'm large boned, have always exercised and eaten healthy, and five years ago added weights to my regimen. I was on Fosamax for 2 years, and my last bone density test was lower than my first.
When I went in for that second test the technician took my height - I have not lost one inch, but she also said - in a rather condescending tone of voice, "I see you've lost weight." Well, yeah - and I was quite proud of that! I did it through healthy eating. But she was looking at me like this was a bad thing.
At my last dr's appointment I told my doctor that I was off Fosamax - because of muscle aches in my legs which are at times unbearable. She told me I shouldn't have done that - and that maybe in the spring - when I came in for my next checkup - she wants to put me on Evista. Everything I've ever read about that drug scares me.
But, I feel like this is my body, and I want to make my own choices. I don't want dr's dictating to me, nor technicians eyeing me warily because I suddenly decided to eat healthfully - and as a result lost weight. (Let me tell you - I am not underweight!)
Linni
Aleta145
02-16-2005, 05:17 PM
Aleta145,
your story sounds like mine.I have no other symptoms other than low bone density. I was so shocked when I was initially diagnosed 2 1/2 years ago. I have never smoked, I'm large boned, have always exercised and eaten healthy, and five years ago added weights to my regimen. I was on Fosamax for 2 years, and my last bone density test was lower than my first.
When I went in for that second test the technician took my height - I have not lost one inch, but she also said - in a rather condescending tone of voice, "I see you've lost weight." Well, yeah - and I was quite proud of that! I did it through healthy eating. But she was looking at me like this was a bad thing.
At my last dr's appointment I told my doctor that I was off Fosamax - because of muscle aches in my legs which are at times unbearable. She told me I shouldn't have done that - and that maybe in the spring - when I came in for my next checkup - she wants to put me on Evista. Everything I've ever read about that drug scares me.
But, I feel like this is my body, and I want to make my own choices. I don't want dr's dictating to me, nor technicians eyeing me warily because I suddenly decided to eat healthfully - and as a result lost weight. (Let me tell you - I am not underweight!)
Linni
Hi Linni,
I've had no ill effects from Evista (nor from tamoxifen before that). I haven't had hot flashes at all. In the MORE study (Multiple Outcomes of Raloxifene Evaluation), they showed a little more than 10% of the 7700 women got hot flashes. That seems pretty high, but then another 6.5% got them but they were taking a placebo! So 3.5 more women per 100 got hot flashes because they took Evista. Maybe not too bad when you look at it that way?
As for your muscle pain on Fosamax, that is one of the side effects mentioned in the literature, but they call it non-serious and not a reason to go off the drug. That's probably why your doctor frowned on you stopping the Fosamax. Did your muscle pain go away after you stopped?
your story sounds like mine.I have no other symptoms other than low bone density. I was so shocked when I was initially diagnosed 2 1/2 years ago. I have never smoked, I'm large boned, have always exercised and eaten healthy, and five years ago added weights to my regimen. I was on Fosamax for 2 years, and my last bone density test was lower than my first.
When I went in for that second test the technician took my height - I have not lost one inch, but she also said - in a rather condescending tone of voice, "I see you've lost weight." Well, yeah - and I was quite proud of that! I did it through healthy eating. But she was looking at me like this was a bad thing.
At my last dr's appointment I told my doctor that I was off Fosamax - because of muscle aches in my legs which are at times unbearable. She told me I shouldn't have done that - and that maybe in the spring - when I came in for my next checkup - she wants to put me on Evista. Everything I've ever read about that drug scares me.
But, I feel like this is my body, and I want to make my own choices. I don't want dr's dictating to me, nor technicians eyeing me warily because I suddenly decided to eat healthfully - and as a result lost weight. (Let me tell you - I am not underweight!)
Linni
Hi Linni,
I've had no ill effects from Evista (nor from tamoxifen before that). I haven't had hot flashes at all. In the MORE study (Multiple Outcomes of Raloxifene Evaluation), they showed a little more than 10% of the 7700 women got hot flashes. That seems pretty high, but then another 6.5% got them but they were taking a placebo! So 3.5 more women per 100 got hot flashes because they took Evista. Maybe not too bad when you look at it that way?
As for your muscle pain on Fosamax, that is one of the side effects mentioned in the literature, but they call it non-serious and not a reason to go off the drug. That's probably why your doctor frowned on you stopping the Fosamax. Did your muscle pain go away after you stopped?
CrohnieToo
02-17-2005, 04:16 AM
Wow, Steve! I didn't realize there was THAT much difference between Zometa and Aredia!!
I had a pamidronate (Aredia) infusion at Mayo Clinic in October 2004 for my osteoporosis since I've refused to even consider Fosamax or Actonel due to my Crohn's disease and Miacalcin is virtually useless. The Endocrinologist at Mayo suggested a TWO HOUR infusion every 3-4 months. I did experience a very mild tingling in the lips and at my wrists. Because of that the drip was slowed to a four hour infusion rate.
The next day I did experience the achey joints, chilled to the bones, queasy symptoms for about 10 hours. Since I have a lot of problems with nausea from the Crohn's at times I just popped a Phenergan tablet and slept the day way.
That was it! No other problems.
I had a pamidronate (Aredia) infusion at Mayo Clinic in October 2004 for my osteoporosis since I've refused to even consider Fosamax or Actonel due to my Crohn's disease and Miacalcin is virtually useless. The Endocrinologist at Mayo suggested a TWO HOUR infusion every 3-4 months. I did experience a very mild tingling in the lips and at my wrists. Because of that the drip was slowed to a four hour infusion rate.
The next day I did experience the achey joints, chilled to the bones, queasy symptoms for about 10 hours. Since I have a lot of problems with nausea from the Crohn's at times I just popped a Phenergan tablet and slept the day way.
That was it! No other problems.
CrohnieToo
02-17-2005, 04:22 AM
Aleta, we had an Orthopedic surgeon speak on Osteoporosis and I brought up my pamidronate infusion (Aredia) and he was quite insistent that I could only have gotten it thru a clinical trial. It wasn't worth arguing with him.
Most hospitals have an infusion center. The Remicade infusions for Rheumatoid Arthritis and Crohn's Disease can be done at these infusions centers. As can the pamidronate infusions for osteoporosis. And virtually any doctor can script them to be done at these infusion centers. These are the same centers that do cancer treatment infusions.
Most hospitals have an infusion center. The Remicade infusions for Rheumatoid Arthritis and Crohn's Disease can be done at these infusions centers. As can the pamidronate infusions for osteoporosis. And virtually any doctor can script them to be done at these infusion centers. These are the same centers that do cancer treatment infusions.
CrohnieToo
02-17-2005, 04:45 AM
Suggie, I also have Crohn's disease. I'm on Pentasa and Imuran for that. I had my first pamidronate (Aredia) infusion in Oct 2004 after I had been on Imuran since April 2003.
Actonel, Fosamax and pamidronate are all bisphosphonates, just different formulations. The pamidronate is less likely to cause problems with the Crohn's because it is given via infusion rather than taken orally. The pamidronate didn't disturb my Crohn's at all. I'm one of the sub set of crohnies more prone to constipation than diarrhea and thus I have a problem taking a calcium supplement which does me no favors in trying to treat the osteoporosis, obviously.
Actonel, Fosamax and pamidronate are all bisphosphonates, just different formulations. The pamidronate is less likely to cause problems with the Crohn's because it is given via infusion rather than taken orally. The pamidronate didn't disturb my Crohn's at all. I'm one of the sub set of crohnies more prone to constipation than diarrhea and thus I have a problem taking a calcium supplement which does me no favors in trying to treat the osteoporosis, obviously.
CrohnieToo
02-17-2005, 04:58 AM
... From what I've read (and this info was dated Dec. 2004 so it's pretty fresh) osteonecrosis of the jaw occurs in an estimated 1 person per 10,000 taking IV biphosphonates. ....
Boy, Aleta! You really have been doing your homework. I must have missed this article you are referring to. Was it online? Do you have the URL? I'd be interested in what else the article had to say.
:bouncing:
Boy, Aleta! You really have been doing your homework. I must have missed this article you are referring to. Was it online? Do you have the URL? I'd be interested in what else the article had to say.
:bouncing:
CrohnieToo
02-17-2005, 05:05 AM
... As for your muscle pain on Fosamax, that is one of the side effects mentioned in the literature, but they call it non-serious and not a reason to go off the drug. That's probably why your doctor frowned on you stopping the Fosamax. Did your muscle pain go away after you stopped?
:rolleyes: That's easy for THEM to say, they aren't the ones experiencing the muscle and bone aches and pains. WE ARE! "I" will be the one to judge just how much ache and pain I'm willing to tolerate in return for any benefit I might get from a med, not them, thank you!!! How about you?
:rolleyes: That's easy for THEM to say, they aren't the ones experiencing the muscle and bone aches and pains. WE ARE! "I" will be the one to judge just how much ache and pain I'm willing to tolerate in return for any benefit I might get from a med, not them, thank you!!! How about you?
Linni
02-17-2005, 07:32 AM
:rolleyes: That's easy for THEM to say, they aren't the ones experiencing the muscle and bone aches and pains. WE ARE! "I" will be the one to judge just how much ache and pain I'm willing to tolerate in return for any benefit I might get from a med, not them, thank you!!! How about you?
I hate taking so much medication - medication that really - really - hasn't been proven in the long term. I've been off Fosamax since October, and still have some aches in my legs, but Fosamax has a half-life, the effects of which can stay in your body up to ten years.
I've been reading about Evista- and how it can cause cancer. It seems women have run from HRT - which now they're all getting off of - to drugs like Fosamaxand Evista - and who knows that in ten-twenty years from now there someone will prove how dangerous these drugs really are - just like the testing done on HRT. My 2 cents.
I hate taking so much medication - medication that really - really - hasn't been proven in the long term. I've been off Fosamax since October, and still have some aches in my legs, but Fosamax has a half-life, the effects of which can stay in your body up to ten years.
I've been reading about Evista- and how it can cause cancer. It seems women have run from HRT - which now they're all getting off of - to drugs like Fosamaxand Evista - and who knows that in ten-twenty years from now there someone will prove how dangerous these drugs really are - just like the testing done on HRT. My 2 cents.
CrohnieToo
02-17-2005, 12:09 PM
I hate taking so much medication - ...
I know what you mean about hating to take so much medication!!!! Up until 1998 we didn't have anything but aspirin and first aid ointment in our medicine cabinet. Now, it seems like my entire computer room is a medicine cabinet!!! Just my one Crohn's medication involves taking 16 capsules a day! (But that sure beats active Crohn's disease!!! At least symptomatic remission, if not total remisssion, feels a whole lot better)! Now I can't take aspirin or any NSAID, only Tylenol.
:rolleyes: :eek:
I know what you mean about hating to take so much medication!!!! Up until 1998 we didn't have anything but aspirin and first aid ointment in our medicine cabinet. Now, it seems like my entire computer room is a medicine cabinet!!! Just my one Crohn's medication involves taking 16 capsules a day! (But that sure beats active Crohn's disease!!! At least symptomatic remission, if not total remisssion, feels a whole lot better)! Now I can't take aspirin or any NSAID, only Tylenol.
:rolleyes: :eek:
suggi
02-17-2005, 12:56 PM
Hi Chronietoo - I am glad you can take meds for your Crohn's. I am allergic to almost everything and can not take sulfa or asacol, etc. When I had an 8 hour bleeding attack from the rectum in 2001 I was on Prednisone from July to March 2002. Could not do that now with the osteo. I was on HRT then and my bones did not go down. In august 2002 I had a mastectomy for DCIS and taken of HRT as once you have breast cancer that is a no no. Even told to stay away from soy. Anyway, my Crohn's has been pretty much under control with 2 Librium 10 mg. 4x/day or 1 Librium 5 mg and 1 librax when spasms (going a lot and pain) are bad. My big problem is the gastritis and esophagitis and acid reflux that hits the upper chest/lower throat area. I guess they call that silent reflux as the rest of the esophagus does not hurt. I always have a "sore throat". The endoscopy done 2 years ago did show some esophagitis at the lower sphincter also. I am on 30 mg. Prevacid AM, 30 mg. Prevacid PM and 300 mg. Zantac PM and still have the problem and the endo wants me to take Fosamax. I am really scared to even if it is the liquid. The liquid does not come in daily only weekly dosing. Pills sometimes get stuck so that is why she gave me the liquid and said "it won't make your problem any worse". Right!!!! I told her it has been worse lately but she said to try it anyway. I am seeing my gastro doc tomorrow and see what he says. I am also afraid because of all my drug allergies....suppose I am allergic to a drug that stays in your system for a week??? She said if I can't take that she was going to do the Pamidronate IV every 3 months. Well, as I said before both the oral surgeon and oncologist warned me against Zometa because of the osteonecrosis because of the osteoarthritis in the jaw joints and the slow bone healing of my pulled tooth (have to get that other one out) so what is the difference between the Pamidronate and the Zometa. I have to look back - someone said Wow they did not know how much different they were but I could not find the post regarding the difference. If you know could you post it. Thanks for your ears everyone. I am on Evista and going down. I feel kind of lost because at least I am not allergic to it and taking a new medicine is always scary for me because I just never know what is going to happen. Also my immune system is really bad -- can't have flu shot (allergic to Thimerasol) can't have pneumonia shot, tetenus shot, etc. etc. etc. The biggy is allergy to carba mix which is in everything (synthetic and natural rubber) - band aid adhesive, IV ports, rubber stoppers in med vials, blood pressure cuffs, catheters, etc. Feeling kind of lost here. Soon I'm going to need a shrink to get me through this. I am even afraid the gastro doc might suggest another endo. Wasn't allergic to carba mix then but the scope has fluorinated rubber in the tip and angle and dermatologist said I could swell up inside, get a rash or anaphylatic reaction - even a delayed reaction. Could you imagine your esophagus swelling up? Gastro doc doesn't seem to think much of patch testing but if I need a band aid my skin actually swells where the adhesive part was - after I take it off......so I know the allergy is real. Thanks. :eek:
suggi
02-17-2005, 01:06 PM
ChronieToo - Hi, me again. It was Steve who apparently posted the difference between Zometa and Pamidronate and you were the one who saw it. I can't find it. Maybe you can tell me the difference or where to look for Steve's posting. Thanks.
CrohnieToo
02-17-2005, 01:42 PM
I had a zometa infusion about a year ago. It was done at the VA hospital in San Francisco. Unfortunately I was one of the people with bad side effects. Within a day of the infusion I had vomiting, severe pains in my bones, and bad inflammation of the eyes. It lasted about two weeks. My doctor said that she couldn't recommend me getting the infusion again. She reccomends it only one a year. It is a serious drug used for bone cancer treatment and the infusion can only last about ten minutes since it can damage your kidneys.
Maybe because I am male my side effects were different. On my last Cat Scan my bone density increased about ten percent, so it probably did help. My doctor says it stays in you bones for up to five years so I might continue to have improvement.
Good luck -- Steve
Here is his post. It was on the first page of this particular thread. I don't know diddley-squat about Zometra except what he posted. I'm wondering if they just really hit him zap with a huge dosage but that it could have been infused more slowly, in lower dosage and spread out over an infusion every 3-6 months like the pamidronate (Aredia). It sound more like VA was trying to kill him and get him off the books than help him! But maybe that is the way Zometa is supposed to be infused. I'm certainly not interested in learning more about it given I have had success w/the pamidronate as far as tolerance, side effects, etc. The nice thing about an infusion, they are right there with you, if you experience ANY reaction regardless how mild they can STOP the infusion immediately and administer any necessary measures to counteract the reaction or if it is a really mild reaction like mine, just that mild tingling in the lips and at the wrists (so mild I wasn't even sure if it was worth mentioning) they can just slow the infusion rate or maybe add some benadryl or something to the infusion.
Maybe because I am male my side effects were different. On my last Cat Scan my bone density increased about ten percent, so it probably did help. My doctor says it stays in you bones for up to five years so I might continue to have improvement.
Good luck -- Steve
Here is his post. It was on the first page of this particular thread. I don't know diddley-squat about Zometra except what he posted. I'm wondering if they just really hit him zap with a huge dosage but that it could have been infused more slowly, in lower dosage and spread out over an infusion every 3-6 months like the pamidronate (Aredia). It sound more like VA was trying to kill him and get him off the books than help him! But maybe that is the way Zometa is supposed to be infused. I'm certainly not interested in learning more about it given I have had success w/the pamidronate as far as tolerance, side effects, etc. The nice thing about an infusion, they are right there with you, if you experience ANY reaction regardless how mild they can STOP the infusion immediately and administer any necessary measures to counteract the reaction or if it is a really mild reaction like mine, just that mild tingling in the lips and at the wrists (so mild I wasn't even sure if it was worth mentioning) they can just slow the infusion rate or maybe add some benadryl or something to the infusion.
suggi
02-18-2005, 04:25 PM
IV MEDICATION FOR OSTEOPOROSIS
Aleta I found the link for new meds: www.s2ortho.com/news/osteoporosis.htm
Thanks for your links.
suggi
Aleta I found the link for new meds: www.s2ortho.com/news/osteoporosis.htm
Thanks for your links.
suggi
georgi
02-23-2005, 10:31 AM
Suggi,
I noticed that on another board that you said that you could not take forteo because of radiation to the thymus. I too have had radiation to the thymus gland. I was hoping to be put on forteo. Please explain why the doctor said no.
Thanks............I am getting desprate.
georgi
I noticed that on another board that you said that you could not take forteo because of radiation to the thymus. I too have had radiation to the thymus gland. I was hoping to be put on forteo. Please explain why the doctor said no.
Thanks............I am getting desprate.
georgi
suggi
02-23-2005, 06:07 PM
Hey Georgi
If you ever had radiation especially to the skelatel area (rib area in our case) we are not good candidates for this. I did not have radiation after my mastectomy but did see the radiation oncologist. She said they used cobalt back then and did not measure it. I called her when I was interested in Forteo and she said flat out NO. I then called the company - not sure if was Lilly or not - and they said I should not be using the Forteo because of that reason. Sooooooo.......that leaves us out sort of. However, I did see there is an up and coming parathyroid drug that does not have the osteosarcoma risk, anyway so I saw.
Suggi
If you ever had radiation especially to the skelatel area (rib area in our case) we are not good candidates for this. I did not have radiation after my mastectomy but did see the radiation oncologist. She said they used cobalt back then and did not measure it. I called her when I was interested in Forteo and she said flat out NO. I then called the company - not sure if was Lilly or not - and they said I should not be using the Forteo because of that reason. Sooooooo.......that leaves us out sort of. However, I did see there is an up and coming parathyroid drug that does not have the osteosarcoma risk, anyway so I saw.
Suggi
georgi
02-25-2005, 09:24 AM
Suggi,
Thanks for the info. I guess I am stuck for awhile taking calcium tablets only. I can't seem to take anything else. I hope that the future looks brighter for those of us that suffer from osteoporosis.
georgi
Thanks for the info. I guess I am stuck for awhile taking calcium tablets only. I can't seem to take anything else. I hope that the future looks brighter for those of us that suffer from osteoporosis.
georgi
suggi
02-25-2005, 11:05 AM
Georgi
Don't be depressed -- I know I have been. I am 36% below fracture level in the spine and a little less in the hip area. Evista isn't working but there is nothing else I can do either. In fact, my leg has been bothering me and I hope it is not DVT. I was actually thinking of going back to HRT in spite of the mastectomy but the gyn is probably right - I shouldn't take it. However, I did get the book "myths of osteoporosis" that everyone is talking about and did find out some interesting info. I have been on mega Librium/Librax for a long time to try to keep the Crohn's under control as I can't take Asacol or Sulfa and supposedly that contributes to osteoporosis. I also upped my Vitamin D by 200 mg. along with the calcium. I don't want to die of osteo but the other osteo drugs would probably kill me anyway. I also saw something promising about Strontium Ranelate or something like that.....it is supposed to have no side effects as it is some trace earth element and Servier Labs is developing it. Take a look at Osteoporosis Watch....it shows all the drugs and up and coming drugs. Very interesting. Hope it is out soon. Good luck and keep posting. I'd like to hear how you are doing and will reply and let you know how things are going on this end. Take care.
Suggi
Don't be depressed -- I know I have been. I am 36% below fracture level in the spine and a little less in the hip area. Evista isn't working but there is nothing else I can do either. In fact, my leg has been bothering me and I hope it is not DVT. I was actually thinking of going back to HRT in spite of the mastectomy but the gyn is probably right - I shouldn't take it. However, I did get the book "myths of osteoporosis" that everyone is talking about and did find out some interesting info. I have been on mega Librium/Librax for a long time to try to keep the Crohn's under control as I can't take Asacol or Sulfa and supposedly that contributes to osteoporosis. I also upped my Vitamin D by 200 mg. along with the calcium. I don't want to die of osteo but the other osteo drugs would probably kill me anyway. I also saw something promising about Strontium Ranelate or something like that.....it is supposed to have no side effects as it is some trace earth element and Servier Labs is developing it. Take a look at Osteoporosis Watch....it shows all the drugs and up and coming drugs. Very interesting. Hope it is out soon. Good luck and keep posting. I'd like to hear how you are doing and will reply and let you know how things are going on this end. Take care.
Suggi
suggi
02-25-2005, 11:45 AM
Hey Georgi
Just a quick question. How old were you when you had the thymus radiation? I had it 2x - infant and 7 or 8 years old to shrink the scar tissue from the first round. I never personally knew anyone else who had this although from what I have read many have and many went on to develop thyroid cancer. Luckily I did not so far but do have many nodules on both sides that they are "sort of" watching. Wonder if this could have anything to do with our osteo. Docs just did not know what they were fooling with back then. My Mother told me just before she died that the doctor had later told her I probably would not live past 16 and if I did not to let me get married and have kids. I guess he found out how bad the radiation could be and maybe thought I would have deformed kids. Anyway, I have 2 kids and grandchildren and all of them seem fine so I guess from that standpoint he overreacted but we were experiments. It was the miracle cure that wasn't.............Hope to chat with you again.
Suggi
Just a quick question. How old were you when you had the thymus radiation? I had it 2x - infant and 7 or 8 years old to shrink the scar tissue from the first round. I never personally knew anyone else who had this although from what I have read many have and many went on to develop thyroid cancer. Luckily I did not so far but do have many nodules on both sides that they are "sort of" watching. Wonder if this could have anything to do with our osteo. Docs just did not know what they were fooling with back then. My Mother told me just before she died that the doctor had later told her I probably would not live past 16 and if I did not to let me get married and have kids. I guess he found out how bad the radiation could be and maybe thought I would have deformed kids. Anyway, I have 2 kids and grandchildren and all of them seem fine so I guess from that standpoint he overreacted but we were experiments. It was the miracle cure that wasn't.............Hope to chat with you again.
Suggi