TB and Remicade

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JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/15/2009 6:21 AM (GMT -7)   
I have a question for anyone that has been on or currently on Remicade.  I am going to be starting it in a couple of weeks.  I have just had my TB test (negative of course) but my wife is concerned of the higher risk of TB on Remicade.  She wants me to get checked out for TB while I am on Remicade. 
My question is, does anyone get tested while they are on Remicade.  It would make sense to be tested but I am not sure if that is standard practice or not.  I am really nervous starting this drug and I would love to put part of mine and my wifes mind at ease.

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 10/15/2009 11:34 AM (GMT -7)   
I got a TB test, negative, I was going to use remicade, but went with Humira instead.

I am sure, that if you are worried about it, you could go and get tested for TB every month if you wanted, it's an easy test, as you already know. As far as it being standard practice, I don't think it is, but I am not sure.
Humira 2 times a month.
Prednisone 2.5mg every other day(10/3/09)
Lialda 2 X day
Imuran 150mg day
Phenergen PRN
Remeron 30mg day
Pain Meds


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/15/2009 4:50 PM (GMT -7)   
The reason that everyone should be tested for TB prior to taking any of the biologic meds [Remicade, Humira, Simpomi, etc] is to make sure the person does not have a latent case of TB. If the person has TB and starts a biologic, there is a huge risk of developing TB.

Since you were negative, the only reason for further TB testing would be if you are routinely exposed to people with active TB. Certain populations in this country have higher rates of TB. For example, if you had constant contact with large amounts of homeless people you might have a slightly higher level of risk of exposure to someone with active TB.

I took Remicade for 2.5 years, Humira for a couple months, and am now on Simponi. Remicade got my guts in remission and greatly reduced my arthritic problems from ankylosing spondylitis. The biologics greatly improved my quality of life. I hope you have a great response to the Remicade.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/15/2009 7:56 PM (GMT -7)   
I'm not at a higher risk for tb, and I get tested every year.  I have been on remicade for 5 years now.  I think my dr. is more cautious than others.  Every year I also have to have a chest xray, and a urine histoplasmosis. 

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 10/15/2009 8:47 PM (GMT -7)   
You're not at higher risk of contracting TB. The issue is that if you have been infected with TB in the past, you could have had a minor infection and not known it, but the TB bacteria are still in your body, inactive. Some people have had these bacteria re-activate when they started Remi and have been very sick; some have even died.

Your TB test showed that you haven't been exposed, there aren't any TB bacteria lurking in your body, so it's a non-issue for you. My GI repeats the TB skin test on a yearly basis just in case I would get exposed in between.
Judy
Co-moderator, Ulcerative Colitis
 
Diagnosed in 2001, finally in remission since March 2006.
Mesalamine is not my friend and steroids are from the devil. Remicade has been my miracle drug.


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 10/16/2009 5:11 AM (GMT -7)   
Thanks everyone for the input.  I am not too worried myself, it is my wife that is worried.  She works in a NY public school and since that has been incidents with TB in the schools, she worries that she will get it and give it to me.  I guess once a year testing should be good.
Crohn's Disease since '88
 


goodmom
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/4/2009 2:07 PM (GMT -7)   
I have been taking Remicade for a year and a half.  I just got out of the hospital with the diagnosis of TB and bilateral pneumonia.  I tested on a regular basis for TB every three to four months.  I worked for a healthcare provider..  The results were always negative.  I took Remicade for Psoriatic Arthritis.  The medication did help my pain.  I  wish you luck with your Remicade.  Use caution, if you feel ill don't assume it will go away.  I did seek treatment for what I thought was an URI.  I was treated with antibiotics, nothing worked.  Even the big antibiotics.  I new something was very wrong.  It took two ER visits and a hospitalization to figure it out.  I'm recovering slowly but surely.  I am sure many of you have had wonderful outcomes with Remicade, I am just one of the side effect statistics that you read about.    Good Luck to you all.

LACKE2
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 11/4/2009 3:02 PM (GMT -7)   
I have been recently diagnosed with either Chrone's or Ulceritis. they are now sure which one yet. I got real sick back in November 2008 ended up with an anal fistula and now they are saying because I continue to drain there are multiple fistulas. I do have two setons inserted in me to keep me from getting another abscess. I am now on my 2nd colon rectual doctor and a G.I. doctor. The blood work really didn't tell them anything, whether it was either disease.

This is just so frustrating it will be exactly one year at the end of November since I got real sick and I am still trying to figure out who or what can fix the fistulas from draining....The colon rectual doctor is now ordering an MRI...the GI doctor wants me to start Remicade or Humira (does anyone know which one is cheaper ) and effective? I feel so lost right now...don't know who to follow or what else can be done. The only meds I am on right now is "Sulfasazine"2 tables 3 times a day...Any suggestions? I am here listening....

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 11/4/2009 4:45 PM (GMT -7)   
Hello Lacke2

Remicade is quite expensive, since it's dose is dependent on your weight somewhat, and it depends on your insurance too. There are many places that can help you pay for it.

I like patient access network a great deal, they have helped me get lialda, they pay for my imuran, and other stuff, they are awesome.
/www.panfoundation.org/

They will only give a 4,000$ grant once per year, which may cover your COPAYS on one or possible two infusions with remicade, did I mention it was expensive....

Also with Humira, I qualifed to get it for free. Another link for you to look into.
www.abbottpatientassistancefoundation.org/pdf/HUMIRA_PAP_Form.pdf

Cimzia is a good one too, I can't find an application for them, I think you have to call, but here is a link.
www.cimzia.com/crohns-disease/Default.aspx

P.S. Welcome to the forums

:-)
Humira 2 times a month.
Lialda 2 X day
Imuran 200mg day
Phenergen PRN
Remeron 30mg day
Pain Meds


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/5/2009 9:08 AM (GMT -7)   
     I usually post on the ulcerative colitis forum but am thinking of starting Remicade since my flares are getting closer together and more severe and I was on prednisone too often to mention.  Prednisone has given me osteoporosis and high blood pressure and with this last round, high blood sugar while taking it.
     My problem is this:  Years ago I worked in a hospital lab.  Before taking a trip to Europe in 1967, I had to be tested for TB.  The patch test came up positive.  I had chest xray and it was negative.  The doctor explained that since I worked in a hospital lab I may have been exposed to TB at one time and it is dormant in my system.  I also had an aunt who died from TB in the early 50's.  I wasn't in contact with her too often, but we did visit her and my uncle (mother's brother) when I was young.  My uncle never contracted the TB.
     Needless to say, I am scared to death to go on Remicade.  My GI doctor's associate told me I was NOT a candidate for Remicade last year while I was hospitalized.  So why is my doctor pushing it?  I had the skin patch done in the hospital last year and it was negative.  The doctor said that was because I was taking prednisone and it may have given a false negative result.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


goodmom
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/5/2009 2:51 PM (GMT -7)   
Dear Christine1946,

your post indicates that you were treated in years past for TB. If that is the case, it is a contraindication to use Remicade. I was told by the infectious disease physician that I could never use Remicade or any of the biologics again, if I did I would get TB again. You have a tough choice to make. Good Luck, I hope the info helped.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/5/2009 7:59 PM (GMT -7)   
     Goodmom...I was never treated for TB.   They took a chest xray and it was negative but they said I must have been exposed to the TB virus and it was dormant in my system.  They never gave me any treatment for it and I never suffered with any lung problems.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 11/6/2009 10:40 AM (GMT -7)   
Christine - I had a positive PPD years ago, but a neg chest x-ray. This means latent TB. The disease is lying dormant in your system. This is not really a problem for a healthy individual, but if the immune system becomes compromised (Remicade, Humira, Cimzia, AZA, 6-MP, MTX) the disease is likely to become active.

There are drugs that you can take that will treat the latent TB. It will essentially kill off the disease that you've been exposed to. (I took a med called INH - isoniazid for a year in 1990.) After that treatment, you can take the meds you need for Crohn's. I have been on all of the biologics and immune modulators without fear.

One you have a positive PPD, you will always have a positive PPD and the test should not be repeated. It checks for antibodies in the system, which remain even after treatment. You will need to get chest x-rays. There's also a new test (GOLD test) that can be used. I've never had it so don't know much about it.

Of course, I am NOT a doctor and this is just what I've learned over the years dealing with all of this. I would suggest talking to your doctor about treating the latent TB before beginning any immune suppressing meds. I don't think you need to take the INH a full year before it's safe to take Remicade. I just don't know about that since my TB exposure was long before Crohn's.

Good luck!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/6/2009 6:56 PM (GMT -7)   
     sr5599...I had the PPD test done today at my GI's office.  I am to check it on Sunday.  I wanted so much to stay off the prednisone, but I am suffering a bad flare of the ulcerative proctitis and in order for me to stay out of the hospital, the doctor told me to start taking 30 mgm of it.  I heard that prednisone can give a false negative reaction to the PPD test...geez, I hope that isn't true.  I have been on 6MP for about seven years and was not tested for TB before taking it and never had a bad reaction from it.  I stopped it yesterday as it isn't doing anything anyway.  This is my third flare in a year and a half.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


brightday
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/17/2013 2:08 PM (GMT -7)   
I have been on remicade for 9 years. it is required to have a tb test yearley.

petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 4/17/2013 6:34 PM (GMT -7)   
The new protocols for the biologics recommend yearly TB tests
Jodi

Crohns, Psoriatic arthritis, Psoriasis in my nails, Hashimotos. Meds- Synthroid, Remicade, Methotrexate, Vitamin D, Biotin
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