REALLY UPSET

February 3, 2002

Dear friends,

First I wanted to say that there are so many posts that need to be responded to that I don't want anyone to think

I am not reading them or that I do not care.

e I am so sorry for you situation and Like I have said I would love to help any way I can, I am also very happy that Martha has stepped up too, I think that everyone here cares a great deal about you and think that we all would love to help you if you just let us know how we can help?

Ok now I have to take a moment to vent myself so let me do that please!

As some of you know about 2 months ago (November) I had a bone scan because my rheumatologist wanted to rule out micro fractures in my heel as the cause of my pain. Back then I only had foot and hand pain. Then I was misinformed and told that I had severe osteoporosis which, at 37 years old is very frightening thing to find out, anyhow the last 3 or 4 weeks my pain has not only intensified but it has spread to my back and esp. my butt, I know that is strange, I noticed it would be very achy after a long time sitting or driving, but I just didn't connect things at first, anyhow, I have been taking this nasal spray that is called calcitonin and I never even thought that my pain could be related to this stupid seemingly harmless spray, this last week my Dr told me no it is not my spray. Then I found out from my other Dr that my osteoporosis is actually not as bad as I was told in fact, it isn't osteoporosis it is the beginning of it, which is called osteopenia, and so he recommended that I take a drug called fosomax, well this drug is awful, it makes you very sick to your stomach, I chose to not take it after the first couple of doses. Now I am in the worse pain of my life and it still didn't dawn on me what is going on till, I read the package insert and found out that the harmless nasal spray I am taking for my bones is in fact possibly causing the pain.

As I have said so many many times my only pain was my hands and feet and now I am so bad, it is hard to sit, hard to sleep everything, it has increased to the point where I am crying all the time and yet, I still am trying to work out everyday however, this is getting to me, so I am stopping this crummy spray to see if that is indeed why I am hurting.

I don't know, I feel that it has to be the meds because this is so bad I am really in agony and it wasn't this bad before.

I do feel that my foot pain and hand pain is neuropathy brought on by my implants since I have had it so long, but the other pain is either this medication or something is really wrong with me.

I am trying to get off the other meds as I want to go natural and do some cleansing and detoxing however, right now I am between a rock and a hard place with all this pain, I simply cannot function like this . So I have gotten off the clonopin finally , that was hard to do believe me I had been on that one since all this implant stuff started, now I just have the pain meds left and I can't do it till I can get this under control.

Well, sorry but I needed to vent this to the group so everyone would know what is going on with me, I am so scared that this is something serious, however my gut instinct is saying to me that it is a side effect so hopefully if I give it time it will get better.

I also want to say that despite my pain my head which, was the worse of my problems has cleared up so much that I know my implants were def the cause of all that brain fog I had, now if medication can cause all this pain, then think about it, it seems really obvious that breast implants can cause many many side effects as well, why is this so hard for people to believe anyhow?

I don't know, sometimes I wonder why Dr's think they know everything, just because a nasal spray doesn't cause these problems in everyone doesn't mean it cannot cause them and just because some women are fine with implants doesn't mean they don't cause major health problems in others.

It seems so unreasonable that they can't even try to understand how much these devices can destroy peoples lives.

Not just the physical aspects, but how much the illness and the emotional aspects of these things ruin some of our lives, it is a shame that we all have had to suffer so much, and sometimes I feel like I have been a lab rat used and discarded by these Dr's who are supposed professionals who swear "first do no harm" someday I believe that god will deal with all those who have committed crimes against us, and they will get what they deserve just, apparently not in this lifetime.

Well, sorry to ramble. I needed to vent a bit myself today.

Love

February 5, 2002

, I told you in an email when you were first dx'd with osteoporosis that fosamax has pretty bad side effects, and I have spoken to very few women who don't have problems with the drug. And actually, most of the drugs out there for osteoporosis are riddled with side effects. Has your doctor ever suggested Actonel? That has a much smaller side effect profile, and unlike fosamax, you don't have to stay upright for 30" after taking it. Also, have you ever asked your doc about Aredia (pamidronate)? That is the IV drug I told you about that has had amazing results with building back bone. It actually draws calcium back into the bones, so not only does it increase bone density, but builds stronger bone. The docs out here are using it quite a bit. The drawback is that it is IV, is VERY expensive, and many insurance companies are not paying for it unless your doctor can tell them that you have failed conservative treatments and are unable to tolerate the side effects. Both calcitonin and fosamax are known to cause all over bone/musculoskeletal pain. Actonel does not cause that type of pain, and is generally tolerated much better by women. I have never seen anyone get sick or sore from an Aredia infusion, either. A common side effect is to have a temp elevation during treatment, and to feel achey, like you have the flu. But no one I ever administered the drug to developed that achiness, although I did see some temp elevations. It is given IV once a month (60-90mg) and is typically given for a least a yr. The infusion runs over 2 hrs. Insurance companies were paying for women to receive this drug back in 1996-1998 and were paying not only for the drug then (when it was investigational), but also for a homecare visit every month. It might be worth it to look into it. Also, are you still taking the Vicodin? If you are trying to decrease the amt you take per day, your pain is going to be severe. You have been on Vicodin for a while, correct? So, no matter how slow you taper off, your pain receptors are going to be turned on, and that means that you are going to have all over pain until your body adjusts to not having the Vicodin. That combined with either the calcitonin or fosamax will make the pain even worse. And interesting enough, calcitonin can cause heel/foot and palm pain. I would ask your docs about Actonel and even Aredia. See what they have to say since you are not able to tolerate the side effects from the others. Actonel is paid for by insurance companies. e ----- Original Message ----- From: Heer Sent: Tuesday, February 05, 2002 4:45 AM Subject: REALLY UPSET Dear friends, First I wanted to say that there are so many posts that need to be responded to that I don't want anyone to think I am not reading them or that I do not care. e I am so sorry for you situation and Like I have said I would love to help any way I can, I am also very happy that Martha has stepped up too, I think that everyone here cares a great deal about you and think that we all would love to help you if you just let us know how we can help? Ok now I have to take a moment to vent myself so let me do that please! As some of you know about 2 months ago (November) I had a bone scan because my rheumatologist wanted to rule out micro fractures in my heel as the cause of my pain. Back then I only had foot and hand pain. Then I was misinformed and told that I had severe osteoporosis which, at 37 years old is very frightening thing to find out, anyhow the last 3 or 4 weeks my pain has not only intensified but it has spread to my back and esp. my butt, I know that is strange, I noticed it would be very achy after a long time sitting or driving, but I just didn't connect things at first, anyhow, I have been taking this nasal spray that is called calcitonin and I never even thought that my pain could be related to this stupid seemingly harmless spray, this last week my Dr told me no it is not my spray. Then I found out from my other Dr that my osteoporosis is actually not as bad as I was told in fact, it isn't osteoporosis it is the beginning of it, which is called osteopenia, and so he recommended that I take a drug called fosomax, well this drug is awful, it makes you very sick to your stomach, I chose to not take it after the first couple of doses. Now I am in the worse pain of my life and it still didn't dawn on me what is going on till, I read the package insert and found out that the harmless nasal spray I am taking for my bones is in fact possibly causing the pain. As I have said so many many times my only pain was my hands and feet and now I am so bad, it is hard to sit, hard to sleep everything, it has increased to the point where I am crying all the time and yet, I still am trying to work out everyday however, this is getting to me, so I am stopping this crummy spray to see if that is indeed why I am hurting. I don't know, I feel that it has to be the meds because this is so bad I am really in agony and it wasn't this bad before. I do feel that my foot pain and hand pain is neuropathy brought on by my implants since I have had it so long, but the other pain is either this medication or something is really wrong with me. I am trying to get off the other meds as I want to go natural and do some cleansing and detoxing however, right now I am between a rock and a hard place with all this pain, I simply cannot function like this . So I have gotten off the clonopin finally , that was hard to do believe me I had been on that one since all this implant stuff started, now I just have the pain meds left and I can't do it till I can get this under control. Well, sorry but I needed to vent this to the group so everyone would know what is going on with me, I am so scared that this is something serious, however my gut instinct is saying to me that it is a side effect so hopefully if I give it time it will get better. I also want to say that despite my pain my head which, was the worse of my problems has cleared up so much that I know my implants were def the cause of all that brain fog I had, now if medication can cause all this pain, then think about it, it seems really obvious that breast implants can cause many many side effects as well, why is this so hard for people to believe anyhow? I don't know, sometimes I wonder why Dr's think they know everything, just because a nasal spray doesn't cause these problems in everyone doesn't mean it cannot cause them and just because some women are fine with implants doesn't mean they don't cause major health problems in others. It seems so unreasonable that they can't even try to understand how much these devices can destroy peoples lives. Not just the physical aspects, but how much the illness and the emotional aspects of these things ruin some of our lives, it is a shame that we all have had to suffer so much, and sometimes I feel like I have been a lab rat used and discarded by these Dr's who are supposed professionals who swear "first do no harm" someday I believe that god will deal with all those who have committed crimes against us, and they will get what they deserve just, apparently not in this lifetime. Well, sorry to ramble. I needed to vent a bit myself today. Love

February 6, 2002

Thanks e I do know about actonel but right now I am trying to just eat right and see how I feel. I am still on vicodin but cutting back. I am in a flair right now and not feeling well at all so I am making this short but I do appreciate your inormation, also I was misdiagnosed I have osteopenia not osteoporosis and yes I do believe that the calcitonin has made me worse, I am off it now.

More later

Thanks,

love,

PS how did your procedure go today?

----- Original Message -----

From: e Rene

Sent: Tuesday, February 05, 2002 3:04 PM

Subject: Re: REALLY UPSET

,

I told you in an email when you were first dx'd with osteoporosis that fosamax has pretty bad side effects, and I have spoken to very few women who don't have problems with the drug. And actually, most of the drugs out there for osteoporosis are riddled with side effects. Has your doctor ever suggested Actonel? That has a much smaller side effect profile, and unlike fosamax, you don't have to stay upright for 30" after taking it. Also, have you ever asked your doc about Aredia (pamidronate)? That is the IV drug I told you about that has had amazing results with building back bone. It actually draws calcium back into the bones, so not only does it increase bone density, but builds stronger bone. The docs out here are using it quite a bit. The drawback is that it is IV, is VERY expensive, and many insurance companies are not paying for it unless your doctor can tell them that you have failed conservative treatments and are unable to tolerate the side effects. Both calcitonin and fosamax are known to cause all over bone/musculoskeletal pain. Actonel does not cause that type of pain, and is generally tolerated much better by women. I have never seen anyone get sick or sore from an Aredia infusion, either. A common side effect is to have a temp elevation during treatment, and to feel achey, like you have the flu. But no one I ever administered the drug to developed that achiness, although I did see some temp elevations. It is given IV once a month (60-90mg) and is typically given for a least a yr. The infusion runs over 2 hrs. Insurance companies were paying for women to receive this drug back in 1996-1998 and were paying not only for the drug then (when it was investigational), but also for a homecare visit every month. It might be worth it to look into it.

Also, are you still taking the Vicodin? If you are trying to decrease the amt you take per day, your pain is going to be severe. You have been on Vicodin for a while, correct? So, no matter how slow you taper off, your pain receptors are going to be turned on, and that means that you are going to have all over pain until your body adjusts to not having the Vicodin. That combined with either the calcitonin or fosamax will make the pain even worse. And interesting enough, calcitonin can cause heel/foot and palm pain.

I would ask your docs about Actonel and even Aredia. See what they have to say since you are not able to tolerate the side effects from the others. Actonel is paid for by insurance companies.

e

----- Original Message -----

From: Heer

Sent: Tuesday, February 05, 2002 4:45 AM

Subject: REALLY UPSET