Re: Remicade

[Guest guest]

Hi Sharon,

My mom is on it and after the first infusion felt better within the

next one to two days. She said that not everyone in the clinic is

the same, but she had pretty immediate results. Hope this helps!

> I know there is at least one person on Remicade, but

> for the life of me I can't remember who it is.

> Imagine that!!

>

> If you are on Remicade, or have tried it in the past

> could you please get in touch with me. I have a few

> questions and it would be nice to hear someone else's

> personal experience.

>

> Maybe I was expecting too much, but I feel that my

> first infusion was a huge waste! Did you feel any

> better after the first infusion? Does it keep getting

> better after multiple infusions? At what point did

> you start feeling the effects from Remicade? What

> dose were you on? Did that dose get increased

> successfully?

>

> I had my first infusion on Friday and that went really

> well. I was tired but think that was from the

> Benadryl. My blood pressure was low, but nothing to

> worry about. On Saturday evening, I had a full out

> ear and joint flare. Took Ultram Sat and Sun, but by

> Monday I could not stand it any longer. Upped the

> pred yesterday and today I feel better.

>

> I would sure appreciate hearing your story, and so

> sorry I've forgotten who it is that wrote about being

> on Remicade, but trying to switch to Enbrel.

>

> Thanks, Sharon

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

Sunny, it is so good to hear from you again. Bet it was hard going from New

York to Calif. So are you back in New York for good now.? I'm glad the the

Remicade is working so well for you. Please keep us posted as to how you are

and where you are. You are in my thoughts and I wish you the best in finding

a new job.

hugs

[Guest guest]

Hi Sharon,

I'm so sorry I took such a long time to reply to you but I was away for a while. I've been laid off for five months now and I went to visit a friend in Los Angeles ( I live in New York City) to look for a job there however I realized I didn't have a desire to live there. Anyway, my remicade experience was highly successful because it worked instantly after the first infusion. This was apparent when I was able to taper down my steroid use without a hitch which I was not able to do on Methotrexate alone. I do not know the dosage I am on but I assume they use the guideline for Rhumatoid Arthitis patients. As far as increasing dosage, I think I've received the same dose but the fusion was administered in a shorter period of time as my body adjusted to it. I can give you more definitive answers later because I am scheduled for an appointment tomorrow.

Sunny

>From: Sharon King

>Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Remicade >Date: Tue, 8 Jan 2002 06:34:17 -0800 (PST) > >I know there is at least one person on Remicade, but >for the life of me I can't remember who it is. >Imagine that!! > >If you are on Remicade, or have tried it in the past >could you please get in touch with me. I have a few >questions and it would be nice to hear someone else's >personal experience. > >Maybe I was expecting too much, but I feel that my >first infusion was a huge waste! Did you feel any >better after the first infusion? Does it keep getting >better after multiple infusions? At what point did >you start feeling the effects from Remicade? What >dose were you on? Did that dose get increased >successfully? > >I had my first infusion on Friday and that went really >well. I was tired but think that was from the >Benadryl. My blood pressure was low, but nothing to >worry about. On Saturday evening, I had a full out >ear and joint flare. Took Ultram Sat and Sun, but by >Monday I could not stand it any longer. Upped the >pred yesterday and today I feel better. > >I would sure appreciate hearing your story, and so >sorry I've forgotten who it is that wrote about being >on Remicade, but trying to switch to Enbrel. > >Thanks, Sharon > >===== > > >__________________________________________________ >

[Guest guest]

Royce, what you may want to do is have them shorten the duration between infusions to 5wks, and have them increase the dosage by 2mg/kg. I don't know if you are on a 3mg/kg dose, or 5mg/kg dose.

Over the time frame of a couple of years, I've gone from a dose of 3mg/kg during the clinical trial for this-- to a dose of 5mg/kg every 5 wks, to 7mg/kg every 5 wks, to the top-- 10mg/kg every 28 days. It now holds me over for 26/28 days-- and those last 2 days, I do have the lymphatic pain and more neuropathy.

Although I am more tired from the immune system being compromised, I still don't have alot of problems with it. I've only gotten one serious infection in the last 5 yrs that I've been on it-- and that was caught early enough so that it did not go into full blown pneumonia-- but was one nasty, nasty case of bronchitis this summer.

Since I live in No. Ca and the forest fires in Concow were just a ridge away (3 miles by air) and 60 miles north of us was the Trinity fires-- and since this is a beautiful valley below-- we get all the smoke from both areas. It did my lungs in-- and put me back on o2 pretty much 24/7.

But the answer is yes, increase the dosage-- decrease the interval between doses-- and I'm sure you'll see progress.

Take care,

Tracie

NS Co-owner/moderator

remicade

I've been on remicade for a few months and the only time i felt it work was after the first time. I don't feel anything now. I'm going to ask if I can shorten my therapy time from every six weeks to every two to three weeks.

[Guest guest]

,

The side effects with Remicade are almost non-existent. I find I sleep all day, even during the infusion. It is no biggie, a two hour nap to be followed by a great sleep for a couple of days.

What I love is that my pain level drops during the infusion, and this last one last week, by the time I was done with the infusion, I found that I could go without my oxygen for a few hours at a time!

The inflammation in my bronchials has cleared up and it's been 5 days since the infusion, and the pain in my spine was gone by that night. I'll be comfortable for the next 2 weeks, so I'll take it!

My hair is thinner, but it's not gone by any means. I do tire easily, so I have to make sure to pace myself, and we still have to deal with the endocrine issues, which all the docs blew off until this last couple of months. So at least now I'm scheduled to see an endo the last week of May. I'm diabetic now, so I'm using insulin, but that is more from the docs blowing off the stuff I was telling them, and a lifetime of being on prednisone-- even as a kid for chronic respiratory infections. (I'm sure it was sarc even then.)

My mom has the same symptoms, so I suspect it's sarc-- at least some of them. But she's almost 80-- and wouldn't do anything to make herself better-- so why bring it up. She's insulin dependant, and still has her 2 cocktails every night-- and that's how it is. Neither she nor my dad are willing to make the changes to make life easier or better, and I don't think they can handle it intellectually any more-- Dad's 82 with Parkinsons and his will to live is diminished, so is mom's-- so I just let them be. Needless to say, it's hard on me to let go-- but I do have to.

It is esssential that you take Folic Acid to ward off anemias-- when you are on any of the immunosuppressants-- so make sure that you have a script for 1mg Folic Acid-- this is a dose that you get by rx. So it's paid for by insurance.

The beauty is that Remicade only wipes out one of the TNF-b -- so it isn't your whole immune system that is gone. In the 4-5 yrs (I can't remember) that I've been on it, this is the 2nd time I've been sick-- so no complaints there.

Take care

Tracie

NS Co-owner/moderator

From: Marla Bramer <mebramer (AT) gmail (DOT) com>Subject: Happy DayTo: "NS" <neurosarcoidosis@ yahoogroups. com>Date: Sunday, April 12, 2009, 8:36 AM

Happy Easter to all! I hope you have a blessed Day. I haven't been answering many emails, I am now having trouble with my BP, it's either too high or too low, so we are adjusting meds??? Mods, I can't remember my yahoo password, I sent a note to them but did not hear back. My mind is spacey again, this last Remicade tx has not been as good as the others??? Anyhoo Have a very Blessed Day! Marla

[Guest guest]

They're going to keep me on the Cytoxin until the paperwork is final. At least that's what I'm assuming since they made me another appt for my normal 3 weeks. Oh, to be rid of the pain in my spine! The sarc has only reared it's ugly head in my brain & spine so far but it's still "active" down by the 4th ventricle & that's the scary one. I am fortunate to not have alot of pain or I just consider it the normal aches of aging a little sooner than I would have gotten them. I can still knit! I sometimes nap during the Cytoxin too. I just have to give up those doughnuts I eat while I wait! I wanted to start getting fruit & peanut butter crackers to snack on anyway. I haven't had a fasting blood test for sugar in years and it has been about 5 years on the pred.Join

our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

From: Marla Bramer <mebramer (AT) gmail (DOT) com>Subject: Happy DayTo: "NS" <neurosarcoidosis@ yahoogroups. com>Date: Sunday, April 12, 2009, 8:36 AM

Happy Easter to all! I hope you have a blessed Day. I haven't been answering many emails, I am now having trouble with my BP, it's either too high or too low, so we are adjusting meds??? Mods, I can't remember my yahoo password, I sent a note to them but did not hear back. My mind is spacey again, this last Remicade tx has not been as good as the others??? Anyhoo Have a very Blessed Day! Marla

[Guest guest]

Judy,

They will start you at 5mg/kg. You'll get the first infusion and then 2wks later a second infusion and then 4wks out- a third infusion. From there they will try to get you on a 6wk cycle. If you aren't getting lasting relief for 6 wks, they may move the interval between infusions up- so that you get them more often. The other thing is that they can increase the mg/kg dose.

As far as getting benedryl or Tylenol-- it is not required. If you have an allergic reaction-- they will have it on hand to administer immediately.

As for the increase chance of lymphoma-- there is an increased risk. Your MD's should have you get a LFT-- Liver Function Test and CBC before each infusion-- and then each month-- so that if you show ANY sign of increased lymphocyte problems, they would stop the Remicade (or Humira, or Enbrel, or Cellcept, or Imuran) and treat the problem. In most patients just stopping the infusions is all that is needed. (I have a couple of article cited in the ARCHIVES) that explain more this issue.

ALL of the BRM:S- Biological Response Modifiers come with the added risk of skin and lymphatic cancer-- Methotrexate shows increased risk of liver cancer.

Staying on top of the blood tests and having your docs monitor this monthly helps to keep you as "safe" as possible. It's a trade off-- some comfortablity in life with an increased "quality of life" or status quo. We know the "status quo" and we want more quality-- I don't have the answer for what choice you need to make for yourself.

For years now-- we've addressed this issue time and again-- I know you've asked this same question multiple times over the years. You can search in the MESSAGE ARCHIVES and get alot of feedback.

Scroll down and in the area called Neurosarcoidosis Community-- is the link to that part of the group site.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sun, November 29, 2009 10:36:32 PMSubject: Remacaide

For those taking remicade How many mg do you take and how ofton do you receive the infusion. Please answer quickly as I have an appointmenttomorrow and Thursday.

Judy in PA