I need the opinion of everyone who considered going on Remicade!

October 26, 2008

Judy, go to the ARCHIVES and when it asks for a subject line-- type Remicade. I've given my story on this so many times-- it's there for you -- for me, Remicade is great.

Take care,

Tracie

NS Co-owner/moderator

I need the opinion of everyone who considered going on Remicade!

What warnings were you given before you started it?If you were offered it what were the pro's and con's they told you?Does it knock out your entire system or is it selective?As you know I have had Hospital grade MRSA which kept me in the hospital for 2 1/2 years during which my total knees were removed and replaced 12 times.One of the tests they do to monitor if it is still active or hiding somewhere is a blood test called a C Reactove protein. But sarcoid also causes and elevation in that test.My internest who I adore and respect thinks I should go for it.My fears of the MRSA returning and my years in the hospital have down right terrified.By the way I got thrown out of water therapy, they thought I was not progressing, now how many people do you think had theirs knees opened up more than 25 timrs.I am dresperite, I don't know what to do I feel absolutely

horrible and sometiomes wish I was dead.They say that God doesn't give you more to handle, but rih=ghyt now I have my doubys.I have had this horrible disease since the stone ages. Ir started in 1971, that makes it, I guess that makes it 38 miserable years.How do you feel while your getting the infusions? How about afterwords. I need to know this becausa i'm scared.I plan on making an appointment with my infectious disease doctor who os really cool, she been threw all of this with me.Keep me in your thoughts and prayersJudy in PA

October 26, 2008

Judy, I don't blame you for being scared with all you've been through I would be too, as far as the Remicade, I am doing great on it, I did my own research with the help of Tracie, whom has a lot of information on Remicade. I started it a couple months ago, and felt so much better even after the first infusion. I feel nothing when it is going in, nothing at all, but I am pretty tired the rest of the day, and the next day too, then I start feeling better. I had to go off it for a month, when I was due my four week dose I didn't get it for eight weeks, due to liver functions high, however just a fatty liver, so went back on the Remicade, I had a dose four weeks ago, and felt better right away, and I will get my next one in two weeks and can't wait.

I'm not sure with your health issues, but if your doctor seems to think it would be OK, I would go for it, you can always stop. I hope it works for you and that you find you will feel better then had in years!

Good luck, and let us know what you decide to do. Blessings, Marla

What warnings were you given before you started it?

If you were offered it what were the pro's and con's they told you?

Does it knock out your entire system or is it selective?

As you know I have had Hospital grade MRSA which kept me in the

hospital for 2 1/2 years during which my total knees were removed and

replaced 12 times.

One of the tests they do to monitor if it is still active or hiding

somewhere is a blood test called a C Reactove protein. But sarcoid

also causes and elevation in that test.

My internest who I adore and respect thinks I should go for it.

My fears of the MRSA returning and my years in the hospital have down

right terrified.

By the way I got thrown out of water therapy, they thought I was not

progressing, now how many people do you think had theirs knees opened

up more than 25 timrs.

I am dresperite, I don't know what to do I feel absolutely horrible

and sometiomes wish I was dead.

They say that God doesn't give you more to handle, but rih=ghyt now I

have my doubys.I have had this horrible disease since the stone ages.

Ir started in 1971, that makes it, I guess that makes it 38 miserable

years.

How do you feel while your getting the infusions? How about

afterwords. I need to know this becausa i'm scared.

I plan on making an appointment with my infectious disease doctor who

os really cool, she been threw all of this with me.

Keep me in your thoughts and prayers

Judy in PA

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

October 30, 2008

2nd request

would like to know what your doctors said to you about the drug?

What warnings did they give you about previous illnesses.

Did any of you have MRSA what they warn you about.

Ineed all the info you can give me.

What were the infusions like, how did the make you feel.

I need your to know your info so I can make a decision.

Judy in Pa

October 30, 2008

Judy, If you go into the group site at YAHOO Groups, click on Messages, and it will ask you to "search" and you type in Remicade-- you will get 2553 messages that have discussed this issue over the years! Several people did respond to your FIRST request-- so make sure you

read all the emails from the group-- that way you will have seen, or can save messages that you want to refer back to--- just put them in your FAVORITES, OR BOOKMARKS-- whichever one your system has available for you to SAVE or PRINT THEM OUT so that you have the info you need, and it doesn't become an emergency-- and no one can get to you in your time frame.

Here is just a couple of many I've done-- and I know Marla, Darlene, Kim, S, and many others have been and are on Remicade.

_____________

Let me share this with you. Back in 2001-I was part of the ACCESS study, along with the clinical trial for Remicade. It was a double blind placebo, and I was lucky-- I got the medication. After my first infusion, my hands, which had become contracted into my thumbs being up against the palm of my hands, opened up for the first time in years. I had been fortunate in that the only way I could handle the pain caused by the contractures was to constantly massage the ligaments in the thumbs and my hands. (I'd also worked for a physical therapist whose speciality was hand rehabilitation, and he had shown me how to keep some of the use of the hands).

I was able to get the Remicade for the first 6 months of the clinical trial, then they withdrew the meds--- and at 6 wk intervals for that full year-- I flew too and from USC-LA for follow-up. My insurance company denied me the Remicade (as we know, FDA hasn't approved it for sarc) so they managed to keep me off it for the next year. Dr. Sharma sent them a letter explaining that I had tried all the others-- Imuran, Plaquenil, Methotrexate, Arava, Prednisone, Solu-medrol, and so many others-- and that the side effects of the prednisone had caused diabetes, rapid heart rate, depression, suicidal idiology, cataracts, hardening of the arteries and osteoarthritis- - the Imuran sent my liver enzymes through the roof, the Arava ate my gut up, and low and behold, the Methotrexate and Plaquenil had helped with my lung issues and my dementia issues, however, they weren't controlling all the problems-- I was still losing my

ability to walk, I was still having serious progression of the short term memory loss, and my body and bone pain was requiring more and more Opiate and narcotics drugs to control. Since I had a history of pain control drug addiction -- this was not a good thing. (Actually, it was drug dependency with the need to self-medicate as I wasn't being prescribed meds strong enough to control my pain issues.*see my story in the ARCHIVES.)

I've now been on the Remicade for the last 3 years, and although I am at maximum dose and 28 day intervals--it has helped tremendously with the bone and body pain-- my thinking and speech is much more clear, and only during this last couple of days prior to my next infusion-- does the lymph pain and inside the bone pain come back with such vengence that I may take a couple of Oramorph tablets over the next 2-3 days.

What I have noticed is that my immune system is not totally blown out-- and that is the beauty of Remicade. It is selective in taking down the TNF-a and TNF-b blood cells, instead of the entire immune system.

Yes, I did for the first time, have pneumonia in August. It was nasty-- very nasty. I do have less energy overall, as it seems the longer that I am on the Remicade it takes longer for me to bounce back after my infusions (a week now instead of 3 days or so) but then my pain and my functioning is so much higher for a couple of weeks-- as compared to not functioning and needing constant help prior to this medication. So yes, for me-- it was a good choice.

I don't know the statistics-- - but Remicade has been around for 10 yrs or so and 10's of thousands of people are on it for Rheumatoid Arthritis, Psoritic Arthritis and Chrohns. They have used it with kids with juvenile RA-- but I haven't spent my energy looking up what the success rate is. I have a group with over 530 members with various stages of sarcoidoisis- - and that is too much of a non-paying volunteer job.

When we suggest any form of treatment-- it's because we have experience, good and bad. Darlene, the other owner-- can tell you that her experience with Remicade was that it kicked up a histoplasmosis infection that landed her in the hospital for the better part of a year. Kim, another of our moderators-- had a severe allergic reaction--- and had to get off it. Debbie, another moderator, can tell you that she saw improvement in her pain levels after the first infusion, but built up an allergy to the Remicade-- and had to give up on it. Marla is having to undergo liver tests-- and whether it is the Remicade or the fact that they've waited so long to treat her NS that her liver is not happy with all the meds she's had to take-- unsuccessfully.

Others will tell you what I have-- that it's been a godsend.

One of the MD's that was with the group had great success with the Enbrel, but couldn't handle the added exhaustion and fatigue that comes with immunosuppressants.

Steroid treatment-- Prednisone and Solumedrol-- seem to add a tremendous amount of energy to our program, but the current research shows that when they take them away, not only does the sarc seem to relapse, but so does the severity.

___________

We all have different stories to tell, it wasn't until I started the Remicade that my brain fog lifted, I knew I was in a brain fog, but had no idea how bad it was until I started the Remicade, so hopefully that will work for your husband too. Marl a-___

I'll resend another email and answer your questions specifficallly .

tracie

I need the opinion of everyone who considered going on Remicade!

2nd requestwould like to know what your doctors said to you about the drug?What warnings did they give you about previous illnesses.Did any of you have MRSA what they warn you about.Ineed all the info you can give me.What were the infusions like, how did the make you feel.I need your to know your info so I can make a decision.Judy in Pa

October 30, 2008

There is an email that explains Darlene's, Marla's, Kim's and Tracie's experience on Remicade-- previously sent under this same subject heading. Please READ IT.

I'll answer your questions below.

would like to know what your doctors said to you about the drug?

They said that there is little research on how Remicade works with Sarcoidosis. They explained all the possible side effects-- which you know are on the warning sheet they give you-- and that scares the pants off everyone. They explain that you may have more of a chance of getting sick from colds and flu's and serious infections. If you start to see signs of getting sick, ie. fever, more fatigue, nausea, vomiting, get in-- and get it checked out If it is an infection, they start you on antibiotics right off the bat. They explain that the chance of developing pernicious anemia (very serious) is higher-- but if you take the FOLIC ACID 1mg DAILY-- that is not likely to happen. You also have an increased chance of lymphomas. SURPRISE-- we have an increased chance of lymphoma without Remicade-- as sarc loves lymphnodes!! In some people that have neurological damage-- higher doses of Remicade can make

neuropathy worse.

What warnings did they give you about previous illnesses.

They really didn't bring previous illnesses into the picture. More than 1 million people are on Remicade (Inflixamab) for Rheumatoid Arthritis. There are many, many on it for Chron's disease. It is also used with Psoratic Arthritis and has a great success rate for sarcoidosis of the skin (erythymous nodusm.) (sp). Did any of you have MRSA what they warn you about.

I have had MRSA in my sinuses several times. However, that has not been an issue for the last 6 or 7 yrs. We all have some Staph Aurreus (Methycillian Resistant Staph Auarreus is the problem) all the time-- we're supposed to. What is not supposed to happen is that it becomes overactive and causes staph infections that are resistant to the antibiotic "cillian" lines. This makes it very hard to get over the infection, or have a wound heal-- the stuff you've dealt with because of your knee surgeries. Again-- it goes back to common sense-- if you are getting sick, or if you have ACTIVE MRSA now-- THEY WONT PUT YOU ON REMICADE. They probably won't put you on any immunosuppressant. Ineed all the info you can give me.What were the infusions like, how did the make you feel.

It's like any IV-- they set you up with a saline bag full of the diluted Remicade and the infusion takes about 2 hrs. Plan on being at the doctors office or infusion place for about 3 1/2 to 4 hrs, depending on how long it takes them to mix the Remicade-- the pharmacists can be slow.

Eat before you get your infusion, and expect to take a nap-- it makes you sleepy. IF you have an allergic reaction- they will have benadryl available to stop the reaction. Some actually automatically add Benadryl to your infusion-- and that makes you even more sleepy.

I've never had any allergic reaction at all. I do doze off, and by the time I wake up-- we're within 20 mins of being done. I go home-- actually feeling falsely energized-- so don't plan on going grocery shopping right afterwards-- go on home and you'll probably doze the afternoon away.

The only time it made me feel nauseauted, was the first couple of infusions, but then I went without breakfast -- so was getting it on an empty stomach.I need your to know your info so I can make a decision.

Please- as you know, this topic has come up over 2500 times-- so this info is in the Messages, Search by Remicade-- and read up. There is so much there-- and so many of us are also sick-- and most of the time, I don't mind reanswering questions-- but we have gone to great lengths to make it so that you can get the info you need if we don't answer right away. The beauty of a group setting is that ALL emails can be read by all the members-- so don't wait and just read the ones with your name on them-- they're open to all-- and you're not snooping if you read a reply that is not on your subject.

As far as making a decision- if you no longer have MRSA-- or any other infection or open wound issue-- I wouldn't worry about those issues. They can run a blood test, do cultures, whatever to check for MRSA. What I've found is that my spine, muscle, ligament, bone and brain fog is so much better now with the Remicade than prior to the Remicade. I had tried all the other stuff, prednisone, Arava, Imuran, Plaquenil, Methotrexate, and more- and those meds weren't keeping the monster at bay-- so I was able to get into the clinical trial for Infliximab (Remicade) for pulmonary and ocular sarcoidosis-- the first infusion took away 20 years of constant severe spinal pain-- some of it Rheumatoid arthritis, some of it sarcoidosis. My thumbs had been contracted in spasm up against the palm of both hands-- and on the flight home from LA-- only 2 hrs after my first infusion-- I was able to open up my hands-- and use the thumbs!

I did have a taste in my mouth of sucking on a lead pipe, but since then, my taste buds are pretty much gone-- and that is no longer a problem.

I also have not gotten sick but the one time this summer. So my immune system is lowered, but probably just to what would be normal for most people.

I use all the common sense stuff, if you eat out, get a straw so that you're not drinking directly from a glass. Make sure the silverware is clean--and that the only lipstick on your coffee cup is yours. Wash your hands. Get plenty of rest, and get lots of fluids. Eat well, and wash your hands! Keep them away from your nose! (Sorry gang, but for those nose pickers out there-- remember it's only when we see the neurologist for the "touch my finger, touch your nose game" that we fling buggers) and you'll stay healthy.

Shop for Christmas online and stay out of the crowds when it's flu season. That even includes going to church-- "Passing the Peace" does not have to include the flu. Stay home during flu season!

Marla will tell you she's done great with Remicade-- her brain fog is better and she has regained strength in her legs. When she had to go off it for a few extra weeks-- she regressed. Now she's back on and doing better again.

Kim had such an allergic reaction it almost killed her. Darlene developed histoplasmosis-- whether due to the Remicade or that the Remicade lowered her already compromised body they can't say-- so she can't take it. Debbie also wasn't able to tolerate it. Both Debbie and Darlene saw improvement, but fungal infections made it so that they can't take it.

I hope this helps-- and I do hope you'll trust yourself enough to go to the messages and search out different subjects-- it's easy-- and there is so much information-- there for your use!

Take care,

Tracie

NS Co-owner/moderatorJudy in Pa

_._,___

October 31, 2008

I've never been on Remicade. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).Subject: Re: I need the opinion of everyone who considered going on Remicade!To: Neurosarcoidosis Date: Friday, October 31, 2008, 4:16 AM Judy, If you go into the group site at YAHOO Groups, click on Messages, and it will ask you to "search" and you type in Remicade-- you will get 2553 messages that have discussed this issue over the years! Several people did respond to your FIRST request-- so make sure you