suggi
02-15-2005, 05:00 PM
Hi, I have sever osteoporosis and have been on Evista on which my bones are getting worse. Does anyone else have this problem with Evista. Unfortunately I am allergic or get bad side effects to most meds and this one did not seem to bother me. I have been to 3 endos. The first said I am going to be dust, the 2nd said I should be allergy tested for Zometa and the 3rd gave me samples of liquid Fosamax and said if I can't take it she will give me Pamidronate IV every 3 months. Well, I had a mastectomy and my oncologist said Zometa will give me osteonecrosis of the jaw because I have osteoarthritis of the jaw joint, I have uncontrollable gastritis, esophagitis, acid reflux and am afraid to take the Fosamax - seeing the gastro doc Friday but I know what he is going to say....and the IV Pamidronate is the same as the Zometa except it is given every 3 months instead of once a year with the same side effects -- also may get kidney failure. It sounds worse than the Zometa as it is given more frequently. I want to go back on HRT as I was on steroids for Crohn's disease July 2001 to March 2002 and my bone density did not move a bit but no one will give them to me because of the breast cancer. I'd rather take the chance than die of osteo. I did see there a few new drugs on the horizon and wondering if anyone heard anything about them. They are: Lasofoxifene (Pfizer) a new generation SERM after Evista (which I would love to get my hands on.......Strontium ranelate - Protelos (Servier) a drug with a novel mechanism of action that works both by reducign bone resorption and stimulating bone formation. Seems like no significant adverse effects.....Preos - similar to Forteo but does not cause bone cancer like Forteo. Supposedly there is some difference between full length and fragment PTH agent forms which makes this a safer drug. Also, Calcilytics - also PTH oral, not injectable (NPS and Glaxo). The 3rd endo poopood these by saying the companies learned from the first round not to do the same tests so therefore the drug seems safer. Well, I'm willing to try them when they are available ----- hopefully soon, and if I can get someone to give me the HRT it might keep me stable until they are available. I also heard about Ibandronate IV and oral but I think it is as bad as the other bisophanates. I am going to see the 2nd endo again the end of this month and ask him about them. Maybe one of you could dig something up also. Thanks. Anyone out there able to give me a prescription for HRT??????????????????????????????? :eek:
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taape
02-15-2005, 11:44 PM
Hi,
I am interested in the new medications you mention. Where did you find out this information from? Your situation sounds complicated but I hope you get one of the doctors to prescribe the medication that will work for you. I can see why you are afraid to take the Fosamax--I only last for 3 weeks and my stomach was a mess. I'm on Forteo but fairly newly diagnosed so I'm not able to help you much but will a GYN doctor prescribe HRT if you sign a contract where you release the doctor/hospital from responsibility of any complications of HRT. Let us know what your 2nd Endo says after you've been there.
I am interested in the new medications you mention. Where did you find out this information from? Your situation sounds complicated but I hope you get one of the doctors to prescribe the medication that will work for you. I can see why you are afraid to take the Fosamax--I only last for 3 weeks and my stomach was a mess. I'm on Forteo but fairly newly diagnosed so I'm not able to help you much but will a GYN doctor prescribe HRT if you sign a contract where you release the doctor/hospital from responsibility of any complications of HRT. Let us know what your 2nd Endo says after you've been there.
suggi
02-17-2005, 01:21 PM
Taape - Hi, I looked on the net for new osteoporosis meds, I think. Actually I don't exactly know how I came across it. I just hope they get approved. No, my gynacologist won't even give HRT to me with a signed waiver so I don't know what I am going to do. One thing I did learn was I am not taking enough Vit D - I should be taking 800 to 1200 (not 400) Vit D with the 1500 calcium. Actually, she said it should be 1500 to 2000 calcium. I bought a bottle of Vit D but not even sure if the vitamins are bothering my stomach also. I'll post after my 2nd endo visit.
suggi
02-17-2005, 01:40 PM
Taape - Actually it seems one of the places I looked is Up and coming osteoporosis drugs.
dmarlowphc
02-17-2005, 08:25 PM
Ask your Doctor about Miacalcin nasal spray. I have acid reflux also and because I'm a truck driver, I can't take Evista or Fosomax. Evista has an increased risk of blood clots. My family has a high incidence of blood clots anyway( strokes) and because I sit for long hours every day driving, it is not an option. The miacalcin is sprayed in alternating nostrils once each day, and the only side effect I've had is occassional light nose bleed. Which isn't bad, considering the high amount of ibuprofen I have to take for my osteoarthritis. Be sure to take however much calcium and vit d the Dr. tells you to. It's very important. I take 2400 mg. of calcium and vit d combined a day in Caltrate 600 plus chewables. I have trouble swallowing the tablets. I burned my throat years ago and can't swallow big pills anymore. Good luck to you and god Bless all of you on here.
Nan-NMW
02-17-2005, 11:15 PM
Suggi, I cannot believe a doctor could be so insensitive as to tell you your bones will turn to dust.
That is unforgivable to scare a person like that.
I will make a suggestion that someone else on this board made, read "The Myth of Osteoporsis" by Gillian Sanson.
This will really help you with your fears and maybe give you hope that meds are not as necessary as doctors have led us to believe. The bottom line is there is not conclusive proof that rebuilding bones stops fractures. Plus the DXA machines only measure bone mass and there are other factors that impact bone health. A very low bone mass reading does not necessarily mean that your bones are "going to turn to dust". Good Luck and I hope you can find some stress relief. Reading this book really helped me.
That is unforgivable to scare a person like that.
I will make a suggestion that someone else on this board made, read "The Myth of Osteoporsis" by Gillian Sanson.
This will really help you with your fears and maybe give you hope that meds are not as necessary as doctors have led us to believe. The bottom line is there is not conclusive proof that rebuilding bones stops fractures. Plus the DXA machines only measure bone mass and there are other factors that impact bone health. A very low bone mass reading does not necessarily mean that your bones are "going to turn to dust". Good Luck and I hope you can find some stress relief. Reading this book really helped me.
taape
02-17-2005, 11:42 PM
I'll ask my doctor tomorrow about the new medications. For calcium supplements I'm taking Citracal and it has Vit D in it --for 630mgs calcium it has 400IU of Vit D. It's kind of expensive but at least it's all in one. Depending on where you live you can also get Vit D from being out in the sunshine. I got out everyday for at least 15 minutes (aside from the rainy/cloudy) days.
dorri
07-19-2005, 02:54 AM
Suggi I was on Evista as well, with little to no help. My first bone density test showed osteopenia. While I was on Evista, I had another, and the results showed worsening, into the osteoporosis range. The one nice thing about Evista, was no side effects, atleast for me. I could take it anytime of the day on a full or empty stomach. But as you said it wasn't doing much good. It's a shame they haven't come up with something else that works without those dreadful side effects.