Re: confused as ever!!!!

[Guest guest]

They want you to stop the Remicade?   How long have you been on it?  I improved a lot when I first started Remicade, but didn't' stop it, now after a year, I am having some more issues, so it's hard to say.  Do you feel " healed " ?  

Marla

 

hi everyone!

i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well!

[Guest guest]

Barbara

What ever your meds please make sure it is a slow wean off. I went off my meds fast and hard I thought I was in remission so I jumped on my supplements again and worked out like a demon to get the weight off that prednisone put on. For a month and half felt and looked health. But what happened is my supplements I used to support my workouts supercharged my immune system and there by supercharging the Neurosarcoidosis. They do not know what cause next to happen, but they say it could had been a stroke or the granulomas around my brain stem swelled up. But what happened is one day at a friends Apartment I fell they say like I was shot or a puppet who had it strings cut. I do not remember much of it but I do remember that I was laying there unable to move a muscle or take a breath at all. I consider that the closest I ever got to death (and I have been in combat some pretty ugly). So I would encourage you to precede slowly in weaning off meds. Because if your Sarcoidosis is like mine at all you do not want your immune system to snap back. Heck It will take me 8 months to wean down from 20mg to 10mg of Prednisone. I do hope you are blessed with reemission and I do Pray for your Healing but I do because of my experience suggest that you procede slowly.

I do pray for healing for all and wish my best for all.

Greg aka Krumdawg

From: Marla Bramer

Sent: Saturday, November 21, 2009 2:48 PM

To: Neurosarcoidosis

Subject: Re: confused as ever!!!!

They want you to stop the Remicade? How long have you been on it? I improved a lot when I first started Remicade, but didn't' stop it, now after a year, I am having some more issues, so it's hard to say. Do you feel "healed"? Marla

On Sat, Nov 21, 2009 at 11:35 AM, BarbaraW <beautybarnweber (AT) yahoo (DOT) com> wrote:

hi everyone!i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well!

[Guest guest]

thanks everyone ! they is my doctors here in ny, of course i will not

do anything without checking with my doctors at cleveland clinic! all

doctors agree that my sarc has quieted down. i had my infusion on

friday and i had a hard time with my muscles again!!!! i really think

the meds are making me worse. like i said confused as ever! do i feel

healed? YES I WAS ABLE TO WALK AROUND A COLLEGE CAMPUS WITH MY DAUGHTER

WHICH WAS A MIRACLE IN ITSELF!!! last time i had blood work was in october at cleveland clinic. the only meds i am on is remicade and arava. To: Neurosarcoidosis Sent: Sat, November 21, 2009 8:08:13 PMSubject: Re: confused as ever!!!!

Are they worried about your liver? How are your LFT's? (Liver Function tests). What about your CBC's? (Blood counts)? It amazes me, they put us on this stuff, then stop it and the problems come back.. The only reason to stop the treatment is that they are afraid your liver or lymphocytes are out of sync.

If they haven't been running a CBC and LFT monthly, then I'd ask for one. Hopefully they put you on Folic Acid 1mg daily (get it by script) and that you've been using the Milk Thistle capsules.

I would be asking them why they want you to quit the treatment.

Good to see you post,

Tracie

NS Co-owner/moderator

From: BarbaraW <beautybarnweber@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Sat, November 21, 2009 10:35:32 AMSubject: confused as ever!!!!

hi everyone!i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well!