Message for all the uses of Remicade past or present

[Guest guest]

Judy, I know that you are scared. I would be too. I can't tell you that you won't reactivate the MRSA. Is it dormant now?

I think that my question would be if I don't do treatment with -something- what is my quality of life going to be. What is it now? Is the way you are now acceptable-- and if you were to progress-- what things can you be willing to give up.

I'll send you a private email -- and we can go over some of the issues.

As far as the Remicade-- you know that Darlene had a very serious reaction, and that an infection in her lungs (histoplasmosis) landed her in the hospital for most of last year. She has recovered

Whether it was beacause of the Remicade-- they can't say. With the progression of all the different meds, then to add the Remicade-- and whether the histo was there prior to the Remicade (her docs think it was)-- is something they can't prove or disprove.

I have not had any allergic reactions, and the blessing is that my spine pain, the pain in my hips and feet and hands is virtually gone for better than 98% of the time-- but I am still having progression with heart issues. I do believe most of it is again deconditioning, as I had to give up my exercise program due to finances.

I am for the most part mentally shaper than I was prior to the Remicade-- so that has improved for the majority of the month. I am getting a 10mg/kg dose every 28 days-- and that is the maximum they'll let me have.

For me, it has kept me alive-- and I'm sure that I would not be alive without it. I'm still able to drive, and do some things that I was not able to do prior to the Remicade. Is it healing me? NO. But it has slowed some of the progression in some systems and that has added to the QUALITY OF MY LIFE.

That is the real question here- you know what you are willing to live with, but what are you willing to live without. How far down are you willing to go. If you are already wheelchair bound, but the thought of being bedbound is not acceptable, and taking the med MAY slow that process down or make it so that it doesn't become the issue-- what do you want?

Take a deep breath-- and realize that there are risks. It's ok-- there are risks without the medication also. Trust your instincts, and know that if you quiet yourself, and listen to that iNNER VOICE we all have, that you will be guided to what you need to do.

Hugs,

Tracie

NS Co-owner/moderator

I really need your immediate response.I have seen Dr. Baughman last October. He recommended that i find someone to administer the Remacaide.Besides my Neurosarcoidosis, I have many serious medical problems. I have always respected all the great things that everyone has said about his care. When my son was diagnosed with sarcoidosis in his lungs.We went to Cinncinati to see Dr. Baughtman,I just loved him from the start. He told me I had very severeneurosarcoidosis. In addition to itI spent 21/2 years in the hospital with MRSA. I may alqso have had a positive cocidiomycosis, the skin test was positive. But there wassome concern that itmight have had a positive skin because of the severe sarcoidosis.I have a great deal of concern the MRSA and coccidiomycosis may be come alive again.I have trendous regard for Dr. Baushman and have heard comments from the members of our group which were very positive regarding the taking Remacaide.I have been besides myself with fear because of alll the other things besides neurosarcoidosis. YOu all seem so calm about it, what am I missing.I really need your input, I have spent the last few days in terrible panic and tears. I need your advise or I feel like I amgping to lose my mind.I understand about the TNF-B and TNF-A the drug seems so right for us. I have lost two young lady friends and the cautions really scare me.What started this was my ortho telling me he could not operate on my shoulder because the severoity of MRSA I had. I spent two and one half years in the hospital and had 23 surgeries during that time. My mobility will alway s be impaired be cause of the compications.I am usually the strong one and right now I feel like I am having a nervous background. I spoke to Rose tonight, she is doing well.I wish I had the ability to talk to Tracie or someone that went to what I am going through.My apppointment is at nine tomorrow morning. Please pray for me I feel like I am losing my mind. I am so scared. I have so many other problems that will complicate the situation.So many bad things have happened to my Beckly that I do not know how God could allow things to happen. If you please give some advice. I will check in before I leave tomorrow. I know that you don't believe that Iama jerk.I'm just scared. I feellike I maybe having a nervous breakdown. How much does God think I can take, my life would make a terrible horror bookand I have reached the point of feeling like I can scream NoMore!!!!Thank you for listening. This has really been a terrible few years for me.Judy in PA Start the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

I really need your immediate response.

I have seen Dr. Baughman last October. He recommended that i find

someone to administer the Remacaide.

Besides my Neurosarcoidosis, I have many serious medical problems. I

have always respected all the great things that everyone has said

about his care. When my son was diagnosed with sarcoidosis in his

lungs.

We went to Cinncinati to see Dr. Baughtman,I just loved him from the

start. He told me I had very severeneurosarcoidosis. In addition to it

I spent 21/2 years in the hospital with MRSA. I may alqso have had a

positive cocidiomycosis, the skin test was positive. But there was

some concern that itmight have had a positive skin because of the

severe sarcoidosis.

I have a great deal of concern the MRSA and coccidiomycosis may be

come alive again.

I have trendous regard for Dr. Baushman and have heard comments from

the members of our group which were very positive regarding the

taking Remacaide.

I have been besides myself with fear because of alll the other things

besides neurosarcoidosis. YOu all seem so calm about it, what am I

missing.

I really need your input, I have spent the last few days in terrible

panic and tears. I need your advise or I feel like I amgping to lose

my mind.

I understand about the TNF-B and TNF-A the drug seems so right for

us. I have lost two young lady friends and the cautions really scare

me.

What started this was my ortho telling me he could not operate on my

shoulder because the severoity of MRSA I had. I spent two and one

half years in the hospital and had 23 surgeries during that time. My

mobility will alway s be impaired be cause of the compications.

I am usually the strong one and right now I feel like I am having a

nervous background. I spoke to Rose tonight, she is doing well.

I wish I had the ability to talk to Tracie or someone that went to

what I am going through.

My apppointment is at nine tomorrow morning. Please pray for me I

feel like I am losing my mind. I am so scared. I have so many other

problems that will complicate the situation.

So many bad things have happened to my Beckly that I do not know how

God could allow things to happen. If you please give some advice.

I will check in before I leave tomorrow. I know that you don't

believe that Iama jerk.I'm just scared. I feellike I maybe having a

nervous breakdown. How much does God think I can take, my life would

make a terrible horror bookand I have reached the point of feeling

like I can scream NoMore!!!!

Thank you for listening. This has really been a terrible few years

for me.

Judy in PA

[Guest guest]

I really need your immediate response.

I have seen Dr. Baughman last October. He recommended that i find

someone to administer the Remacaide.

Besides my Neurosarcoidosis, I have many serious medical problems. I

have always respected all the great things that everyone has said

about his care. When my son was diagnosed with sarcoidosis in his

lungs.

We went to Cinncinati to see Dr. Baughtman,I just loved him from the

start. He told me I had very severeneurosarcoidosis. In addition to it

I spent 21/2 years in the hospital with MRSA. I may alqso have had a

positive cocidiomycosis, the skin test was positive. But there was

some concern that itmight have had a positive skin because of the

severe sarcoidosis.

I have a great deal of concern the MRSA and coccidiomycosis may be

come alive again.

I have trendous regard for Dr. Baushman and have heard comments from

the members of our group which were very positive regarding the

taking Remacaide.

I have been besides myself with fear because of alll the other things

besides neurosarcoidosis. YOu all seem so calm about it, what am I

missing.

I really need your input, I have spent the last few days in terrible

panic and tears. I need your advise or I feel like I amgping to lose

my mind.

I understand about the TNF-B and TNF-A the drug seems so right for

us. I have lost two young lady friends and the cautions really scare

me.

What started this was my ortho telling me he could not operate on my

shoulder because the severoity of MRSA I had. I spent two and one

half years in the hospital and had 23 surgeries during that time. My

mobility will alway s be impaired be cause of the compications.

I am usually the strong one and right now I feel like I am having a

nervous background. I spoke to Rose tonight, she is doing well.

I wish I had the ability to talk to Tracie or someone that went to

what I am going through.

My apppointment is at nine tomorrow morning. Please pray for me I

feel like I am losing my mind. I am so scared. I have so many other

problems that will complicate the situation.

So many bad things have happened to my Beckly that I do not know how

God could allow things to happen. If you please give some advice.

I will check in before I leave tomorrow. I know that you don't

believe that Iama jerk.I'm just scared. I feellike I maybe having a

nervous breakdown. How much does God think I can take, my life would

make a terrible horror bookand I have reached the point of feeling

like I can scream NoMore!!!!

Thank you for listening. This has really been a terrible few years

for me.

Judy in PA

[Guest guest]

Judy, what Tracie says here is absolutely right.......my specialists

were VERY good and they have told me that since I came so close

to death that I should NEVER try Remicade again. But this does

not mean that it will not work on you! As Tracie said, she has had

good results with it as many others have........we (docs and myself)

do not know if my problems were from the histo, the Remicade, or

the combination, but I will NOT take that chance. I was told that

as near death as I was, that my body probably could not stand

another round like that.........but........everyone is different and this

is something you will have to discuss with your Doctors and decide

if you are willing to accept the side effects for the benefits to you.

Good luck and keeping you in my thoughts and prayers.

Hugs,

Darlene

NS Co-Owner/Moderator

As far as the Remicade-- you know that Darlene had a very serious reaction, and that an infection in her lungs (histoplasmosis) landed her in the hospital for most of last year. She has recovered. Whether it was beacause of the Remicade-- they can't say. With the progression of all the different meds, then to add the Remicade-- and whether the histo was there prior to the Remicade (her docs think it was)-- is something they can't prove or disprove.

..