Wellness

[LilacTree]

On 6/6/2014 serenity4ever said:

On 6/5/2014 CouponQueen said:

I have read your many threads on this subject Ford..and I often think you are looking for somebody to agree with you and say "don't take them..keep on taking the Prednisone.." that is all I can think of..you have asked numerous MDs and they all tell you how bad it is for you..you yourself KNOW how bad it is..just the issues with that alone....but you are not willing to even TRY the bio drugs and who knows it may turn your life around and give you a far better quality then you can imagine. Plus give your kids who are having to worry and care for you a sense of peace that maybe this will help.

I am at a loss sometimes reading your post. Sydsgram has posted to you OVER AND OVER again her experiences..how life is for her etc..but you disregard it..and wait and post a few months later looking for somebody else to come along and say don't take those horrible bio drugs.

I am not sure what you are looking for? At this stage - you are wheelchair bound often..your kids care for you etc..and you KNOW first hand the damage of the Sterioid by each and every MD..and you are like RR who goes and sees/calls asks every person the same thing until she finds one to agree with her and then has the "gotcha" moment.

Seriously - it IS up to you..but you know the damages caused..you know the potential pros of the bio meds..for the life of me I don't just get why you don't give them a short trial..

Your immune system and every thing else is a mess on the Steriod..why not take a well planned risk on the bio's and who knows..it may be the risk that changes your life..take it for a short trial..and if it works ABSOLUTELY F fantastic..if it doesn't..then you know and the 'what ifs' are over!

But it seems you are searching and searching for one MD to agree with you..to keep taking the Prednisone and don't try the bio..that is what it looks like?

You can't be comparing Rainbows and Roses to Ford??????To do so is harsh and unfair.

No one knows the exact stage that Ford is in regarding her illness. The biologics can cause cancer and a myriad of immune system problems. Ford is a very smart woman and if the biologics were for her she already would be taking them.

The fact that you work in the mental health field and the scathing response you made to her.....I just don't understand your cruelty.

Thanks you for your understanding and "taking up for me," serenity. It will change nothing, however. I was amazed actually at how long it took them to find me on this thread. I don't bother trying to defend myself from their attacks, as they have no idea who I am or what my life is like . . . and they don't care. They make up their own scenarios.

Thanks again, I truly appreciate it.

[serenity4ever]

On 6/6/2014 Ford1224 said:

On 6/6/2014 serenity4ever said:

On 6/5/2014 CouponQueen said:

I have read your many threads on this subject Ford..and I often think you are looking for somebody to agree with you and say "don't take them..keep on taking the Prednisone.." that is all I can think of..you have asked numerous MDs and they all tell you how bad it is for you..you yourself KNOW how bad it is..just the issues with that alone....but you are not willing to even TRY the bio drugs and who knows it may turn your life around and give you a far better quality then you can imagine. Plus give your kids who are having to worry and care for you a sense of peace that maybe this will help.

I am at a loss sometimes reading your post. Sydsgram has posted to you OVER AND OVER again her experiences..how life is for her etc..but you disregard it..and wait and post a few months later looking for somebody else to come along and say don't take those horrible bio drugs.

I am not sure what you are looking for? At this stage - you are wheelchair bound often..your kids care for you etc..and you KNOW first hand the damage of the Sterioid by each and every MD..and you are like RR who goes and sees/calls asks every person the same thing until she finds one to agree with her and then has the "gotcha" moment.

Seriously - it IS up to you..but you know the damages caused..you know the potential pros of the bio meds..for the life of me I don't just get why you don't give them a short trial..

Your immune system and every thing else is a mess on the Steriod..why not take a well planned risk on the bio's and who knows..it may be the risk that changes your life..take it for a short trial..and if it works ABSOLUTELY F fantastic..if it doesn't..then you know and the 'what ifs' are over!

But it seems you are searching and searching for one MD to agree with you..to keep taking the Prednisone and don't try the bio..that is what it looks like?

You can't be comparing Rainbows and Roses to Ford??????To do so is harsh and unfair.

No one knows the exact stage that Ford is in regarding her illness. The biologics can cause cancer and a myriad of immune system problems. Ford is a very smart woman and if the biologics were for her she already would be taking them.

The fact that you work in the mental health field and the scathing response you made to her.....I just don't understand your cruelty.

Thanks you for your understanding and "taking up for me," serenity. It will change nothing, however. I was amazed actually at how long it took them to find me on this thread. I don't bother trying to defend myself from their attacks, as they have no idea who I am or what my life is like . . . and they don't care. They make up their own scenarios.

Thanks again, I truly appreciate it.

You're welcome Ford and just so you know, I understand about your questions about biologics.I think doctors don't always listen to our concerns and use a one size fits all approach to medicine.

[LilacTree]

On 6/6/2014 serenity4ever said:

On 6/6/2014 Ford1224 said:

On 6/6/2014 serenity4ever said:

On 6/5/2014 CouponQueen said:

I have read your many threads on this subject Ford..and I often think you are looking for somebody to agree with you and say "don't take them..keep on taking the Prednisone.." that is all I can think of..you have asked numerous MDs and they all tell you how bad it is for you..you yourself KNOW how bad it is..just the issues with that alone....but you are not willing to even TRY the bio drugs and who knows it may turn your life around and give you a far better quality then you can imagine. Plus give your kids who are having to worry and care for you a sense of peace that maybe this will help.

I am at a loss sometimes reading your post. Sydsgram has posted to you OVER AND OVER again her experiences..how life is for her etc..but you disregard it..and wait and post a few months later looking for somebody else to come along and say don't take those horrible bio drugs.

I am not sure what you are looking for? At this stage - you are wheelchair bound often..your kids care for you etc..and you KNOW first hand the damage of the Sterioid by each and every MD..and you are like RR who goes and sees/calls asks every person the same thing until she finds one to agree with her and then has the "gotcha" moment.

Seriously - it IS up to you..but you know the damages caused..you know the potential pros of the bio meds..for the life of me I don't just get why you don't give them a short trial..

Your immune system and every thing else is a mess on the Steriod..why not take a well planned risk on the bio's and who knows..it may be the risk that changes your life..take it for a short trial..and if it works ABSOLUTELY F fantastic..if it doesn't..then you know and the 'what ifs' are over!

But it seems you are searching and searching for one MD to agree with you..to keep taking the Prednisone and don't try the bio..that is what it looks like?

You can't be comparing Rainbows and Roses to Ford??????To do so is harsh and unfair.

No one knows the exact stage that Ford is in regarding her illness. The biologics can cause cancer and a myriad of immune system problems. Ford is a very smart woman and if the biologics were for her she already would be taking them.

The fact that you work in the mental health field and the scathing response you made to her.....I just don't understand your cruelty.

Thanks you for your understanding and "taking up for me," serenity. It will change nothing, however. I was amazed actually at how long it took them to find me on this thread. I don't bother trying to defend myself from their attacks, as they have no idea who I am or what my life is like . . . and they don't care. They makYese up their own scenarios.

Thanks again, I truly appreciate it.

You're welcome Ford and just so you know, I understand about your questions about biologics.I think doctors don't always listen to our concerns and use a one size fits all approach to medicine.

Yes, so very, very true. The last (and present) rheumatologist saw me for the first time, stayed five feet away from me, did not examine me at all, gave me five minutes, and handed me a scrip for a biologic. He kept instructing the young doctor also in the room with him to "take notes."

The one before him did examine my hands and fingers, acknowledged that I should be off prednisone and told me to titrate (which I have been doing) and said we'd go from there when I was done with the prednisone when I refused another scrip for a different bio. I have never said I was right, but my fear seems to exceed my bravery. I believe I would not survive these highly toxic drugs because I am extremely susceptible to infection and that is their main side effect. Of course, I realize prednisone was not a good decision either, but that was ten years ago when I did not know what it was going to do to me.

Two or three "rheumies" prior to those two were no better. In fact one told me ten years ago that I had "about seven years to live." I have obviously outlived her prediction.

Thanks again for your understanding, serenity. I do have friends here, for which I am really grateful.

[LilacTree]

To Bobbisue, in case you come back to review your post.

I seem to have "hijacked" a good part of this thread, which I did not mean to do, it just "grew." I apologize to you for that.

[serenity4ever]

On 6/6/2014 Ford1224 said:

On 6/6/2014 serenity4ever said:

On 6/6/2014 Ford1224 said:

On 6/6/2014 serenity4ever said:

On 6/5/2014 CouponQueen said:

I have read your many threads on this subject Ford..and I often think you are looking for somebody to agree with you and say "don't take them..keep on taking the Prednisone.." that is all I can think of..you have asked numerous MDs and they all tell you how bad it is for you..you yourself KNOW how bad it is..just the issues with that alone....but you are not willing to even TRY the bio drugs and who knows it may turn your life around and give you a far better quality then you can imagine. Plus give your kids who are having to worry and care for you a sense of peace that maybe this will help.

I am at a loss sometimes reading your post. Sydsgram has posted to you OVER AND OVER again her experiences..how life is for her etc..but you disregard it..and wait and post a few months later looking for somebody else to come along and say don't take those horrible bio drugs.

I am not sure what you are looking for? At this stage - you are wheelchair bound often..your kids care for you etc..and you KNOW first hand the damage of the Sterioid by each and every MD..and you are like RR who goes and sees/calls asks every person the same thing until she finds one to agree with her and then has the "gotcha" moment.

Seriously - it IS up to you..but you know the damages caused..you know the potential pros of the bio meds..for the life of me I don't just get why you don't give them a short trial..

Your immune system and every thing else is a mess on the Steriod..why not take a well planned risk on the bio's and who knows..it may be the risk that changes your life..take it for a short trial..and if it works ABSOLUTELY F fantastic..if it doesn't..then you know and the 'what ifs' are over!

But it seems you are searching and searching for one MD to agree with you..to keep taking the Prednisone and don't try the bio..that is what it looks like?

You can't be comparing Rainbows and Roses to Ford??????To do so is harsh and unfair.

No one knows the exact stage that Ford is in regarding her illness. The biologics can cause cancer and a myriad of immune system problems. Ford is a very smart woman and if the biologics were for her she already would be taking them.

The fact that you work in the mental health field and the scathing response you made to her.....I just don't understand your cruelty.

Thanks you for your understanding and "taking up for me," serenity. It will change nothing, however. I was amazed actually at how long it took them to find me on this thread. I don't bother trying to defend myself from their attacks, as they have no idea who I am or what my life is like . . . and they don't care. They makYese up their own scenarios.

Thanks again, I truly appreciate it.

You're welcome Ford and just so you know, I understand about your questions about biologics.I think doctors don't always listen to our concerns and use a one size fits all approach to medicine.

Yes, so very, very true. The last (and present) rheumatologist saw me for the first time, stayed five feet away from me, did not examine me at all, gave me five minutes, and handed me a scrip for a biologic. He kept instructing the young doctor also in the room with him to "take notes."

The one before him did examine my hands and fingers, acknowledged that I should be off prednisone and told me to titrate (which I have been doing) and said we'd go from there when I was done with the prednisone when I refused another scrip for a different bio. I have never said I was right, but my fear seems to exceed my bravery. I believe I would not survive these highly toxic drugs because I am extremely susceptible to infection and that is their main side effect. Of course, I realize prednisone was not a good decision either, but that was ten years ago when I did not know what it was going to do to me.

Two or three "rheumies" prior to those two were no better. In fact one told me ten years ago that I had "about seven years to live." I have obviously outlived her prediction.

Thanks again for your understanding, serenity. I do have friends here, for which I am really grateful.

I can relate!! When I was diagnosed with Type 1 diabetes in my teens, I was told to never have children. I asked about how long I would live and told if I made it to 40, I would be lucky. Well, here I am more than twenty years later and I had two children. It hasn't been easy but I have managed. Now I have had back to back kidney infections and found out it was because a drug I have been taking causes UTI's and kidney problems. I get disgusted sometimes in the stupidity of giving someone with an already compromised immune system a drug with side effects like that. I am getting better today but for two days was running fevers and could barely walk.

So I hear you loud and clear. And yes you have many friends here and I am honored to have gotten to know you here.

[brii]

Ford, I truly admire your dignity, class, and honesty. )

[LilacTree]

Brii, serenity, sydsgma, and so many other wonderful, empathetic (to everyone) and intelligent women . . . you are the reason I stick with it here. You seem to understand that people aren't perfect, we all make mistakes and many wrong decisions. I have certainly done my share of that. Please know how I appreciate you and have seen how others appreciate you also. You are kind to everyone.

My own mother died at age 49 and I had not seen much of her for the eight years prior to that because I lived with my husband and children in northern VA, five hours away. Then my father moved to Florida with his second wife and remained there for 25 years. We saw him only several times during that period, they never invited us down.

My point is, I have never really witnessed how people grow old and get sick (although I spent the last four months of my mother's life taking care of her, with my two babies, ages 2 months and 18 months, having had to leave my older two, ages 3 and 4-1/2 with my husband in VA, something I have never regretted doing.)

So I tell my children now . . . "witness all of my mistakes and bad judgment, take seriously the things I have done wrong, especially with my health and in other ways. This is priceless education for you and will help you to grow old in a healthier, wiser way. I am so glad I have lived this long so you can benefit from my life in both the positive and negative ways I have lived it."

Again, thank you, my friends, for your kindness and friendship.

[brii]

Ford, I copied your quote. That's a powerful message.

[LilacTree]

On 6/7/2014 brii said:

Ford, I copied your quote. That's a powerful message.

Thanks, brii . . . I am quite melancholy today.

[Disneylandfan]

My mom had lupus and was on prednisone for as long as I can remember. I know it was a drug she didn't like.

Fast forward my 8 yr old DD had an allergic reaction to an antibiotic 8 days into her treatment. Urgent care wanted to give her prednisone. My concern came through loud and clear and while they gave her a steroid shot it was a different name (can't remember of the top of my head) and it was a 1 time dose as apposed to having her take the prednisone for 3 days.

Was it any better? I have no idea but the idea of putting prednisone into my daughter's body scared me.

I'm sorry all you ladies/men have to take this drug.