Update: On my daughter Holly.

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73monte
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Date Joined Mar 2007
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   Posted 2/20/2009 4:45 PM (GMT -7)   
Hi All,
 
<<<Once again, I'll start with a recap, for those who haven't followed my other posts. My daughter is 15, and has Crohn's/TI. She had and abscess with a fistula in December. Hospitalized for 10 days. Had a CT drain, released and just finishing up Prednisone.>>>
 
Well, the nurse from the clinic called today and spoke with my wife. We had been expecting to start Imuran or possibly a resection for 2cm of stricture. She said that our GI, had conferred with a surgeon and Radiologist. They do not feel that Holly is a candidate for surgery at this time. They would like her to start on Remicade. This seemed to come out of left field for us.
 
I've called and left a message, that before we make any decisions about what to do next, I would like an appt. with our GI to discuss all the reasons, risks, prognosis etc. 
 
I think that the fistula is likely the stumbling block right now. I'll have to do some research about Remicade. I'd appreciate any imput anyone has about this choice of treatment. As some may remember, Holly has never had the Chicken Pox, which was a big concern for Imuran. I'm not sure if the same concern exists with Remicade. I'm not even sure if Remicade is an immunosuppressant as Imuran is.
 
I'm really trying to keep my posts shorter. I hope I've been concise enough. I'm really having  a tough time deciding on what the best thing to do for our daughter.
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 2/20/2009 5:44 PM (GMT -7)   
Hi Tom hope you can get in soon to see the Dr. to talk over her care. I am glad that she does not need surgery at this time. Remicade is a big step that's for sure. It is a immune supressant and if you goggle it there is alot of info on it. It is a biologic and I was on it for 6 months and is supposed to be good for healing fistula's. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 2/20/2009 6:00 PM (GMT -7)   
Some docs are now using Remicade/Humira/Cimzia as a first drug in order to hit the disease as hard as possible in the early stages before it can cause a lot of damage.

As Gail says it is an immunosuppresant and the pox risk would remain, but right now I think priority #1 is getting her feeling better and avoiding the knife.

Remicade helps alot of people. Most of them aren't on this site, they're out living their busy lives and not thinking about this DD!
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 2/20/2009 7:42 PM (GMT -7)   
Thanks guys,
 
I did google Remicade briefly as "Gail" suggested. WOW!! is that alot to digest. This seems to be a serious and potentially dangerous drug. It seems difficult to understand just how likely some of the serious side effects are to present themselves. Particularly the Lymphoma and death part. 
 
I hope to hear from more Remicade users. I would like to know if this is a drug that can be used for a short term, then discontinued. I seem to remember something about antibodies being built up against the drug preventing going on and off the drug.
 
Tom. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/20/2009 10:58 PM (GMT -7)   
Hi there. I'm so sorry you are facing such difficult decisions with your daughter. Hang in there, things do normally tend to get better. My husband was near peritonitis, and was actually in the hospital with crohn's and a c-diff infection - a really really trying time. Remicade without a doubt, is the wonder drug that saved my husband from surgery last year. Without remicade, my husband would have had to come back home with a temporary ileostomy, and missing 1/2 his colon. Remicade helped heal his colon when even 150mgs of prednisone failed!

Remicade can have scary side effects; but when it works, it gives you your life back. Of course the possible side effects are scary to say the least - I too live in fear that one day our decision to use remicade as treatment for crohn's will come to bite us in the rear end. But my husband has now been on Remicade for 10 months now, and it has really given us our life back - he's back to normal after having lost over 45 lbs in his hospital stay of over 2 months. For now, I can say, Remicade has been a life saver.

Our GI recommends continuing remicade indefinitely because of the fear of developing antibodies; and as long as he doesn't suffer side effects from Remicade, we intend to continue. These are the reasons we chose to try Remicade:
* The side effects of remicade that actually kill are very very rare and are linked to taking other therapies in conjunction (such as imuran, 6mp and methotrexate). So, we decided to try remicade alone - without any other therapies in conjunction (other than the hated pred of course).
* Stem cell therapies are just around the corner - prochymal is due to be approved I think this year sometime. Surgery is permanent as are the consequences of the surgery (B-12 absorption, rapid transit times, etc, which can affect quality of life). We chose to put our faith in science, and hope that we aren't part of the unlucky few who put their faith in remicade, and end up with even more horrible consequences than crohn's.

From the moment my husband was diagnosed, we've faced nothing but difficult choices in the treatment of this disease. Surgery, scary meds with the possibility of horrible side effects, increased risk of cancer both from the disease and from the medications to treat it - there really is no clear route, no golden path. It's like a game of russian roulette with your or your loved ones' life. So make the best decisions you can, and remember not to beat yourself up if it turns out to be the wrong one, and don't ever ask yourself "what if", or mire yourself in the "if only" pity party. So, we've made the best decisions we can, and we enjoy every good day we have, because we have learnt just how fragile and precious this wonderful sense of well being really is.

I hope your daughter gets better like my husband, and life returns to normal for you too. I hope our story helps you in the decisions you have to make.

-PV

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/21/2009 5:43 AM (GMT -7)   

Hi Tom,
I have vaguely been following your daughters progress but haven't posted, the others here are amazingly knowledgeable and pretty much seem to cover it!!

I am an infliximab/remicade user and I am an episodic user. Here in the UK when they first got the budget for infliximab as it was so expensive they'd only give you one dose and then you'd get the next when your symptoms returned, for me it was 2 years before I had the second and that gave me another 3 years symptom free.
Now infliximab is widely available in the UK and the majority of patients have switched to having it regularly and those who start it now are regular users. There is a lot of evidence that says regular treatments are better than episodic use, its something like 50% more likely to stay healthy over X amount of time in comparison if you having it regularly and less chance of building up antibodies and reactions etc. So there is a very strong argument for having treatment regularly.

I however am very wary of infliximab, if one dose was enough to take me from literally moments away from an ostomy to two years without symptoms then that is one incredibly powerful drug. And what could the benefits have possibly been of having it every 8 weeks during those two years? And the next 3? In total if I had been a regular user that would have been 30+ infusions when in actual fact for me 2 doses is all it took. As a 22 year old female who is also on methotrexate I worry about toxifying my body too much and so have always used infliximab as my 'emergency treatment' when a flare strikes and this has been very successful for me. After my last flare (a tricky one, but is another story lol) my GI suggested maybe a course of infliximab and then after remission had been achieved for a while to come off it, from what I've read (I'll have to look up links for you as don't have them saved on my laptop but I did extensive research into infliximab a couple of months ago when I was considering switching to regular infusions, its bulky information just to warn you!) is you can have a course, stop when remission is achieved and you can go back on it again but after an antibodies test to make sure that in that period of time off it you haven't built up antibodies to it.

Episodic use is not standard treatment like it was a few years back, it works for me and some others out there but carries more risks and regular treatment is more likely to be successdul, I just happen to be in the smaller percentages where episodic use has been successful, I just thought I'd tell you my experience but remember with Crohn's each case if very different. But basically you don't HAVE to have it regularly, and you may be able to stop and re-start, its tough because obviously there's the role of antibodies etc, its a really tough decision to make using infliximab, so arm yourself with as much information and research as possible and really talk out all options with your GI. I really hope that whatever happens your daughter manages to get this under control and enjoys many years of remission.


 
 


Julia Hill
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Date Joined Mar 2008
Total Posts : 543
   Posted 2/21/2009 6:36 AM (GMT -7)   
Hi Tom,

Before I started the remicade I had a weekly injection (25 mg) of methotrexate for nine months. This was to protect me from the antibodies. I started the remicade with the loading doses, then one treatment every 8 weeks. I too was scared and scepticle at first, then I began to see and feel the results. It really helped my fistula and periannal crohn's when nothing else would anymore. As the months passed we decreased my MTX to 15 mg/wk, then down to 7.5 mg/wk. It was then (appro. 1 1/2 - 2 years later) that I developed remicade induced lupus. I went to see a rhuemy for the lupus and she said that by lowering the MTX it lowered the flood gates for the antibodies and boom there was the lupus. That was 3 years ago now, and the lupus is pretty much gone (although now I am on Humira so who knows). I did have bloodwork done every 6 months and after 1 1/2 years it came back negative so I am hoping the lupus is gone forever, never to return. I must say though within 6 months of discontinuing the remicade I was back at square one with the crohn's.

Take care,
Julia

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/21/2009 11:56 AM (GMT -7)   
Tom,
It helps to know that Remicade was first used specifically to treat those with fistulizing and/or severe CD. Remicade has been shown to be very effective at healing fistulae. As the use of Remicade became more widespread and further studies were done, the approach to deciding whom to use the medication on was changed. There are still two schools of thought in treating CD, the top-down and step-up approaches. Let me say first, that those adults diagnosed with severe and/or fistulizing CD are almost always treated agressively from the outset after diagnosis. I am not as familiar with pediactric usage so my comments pertain to adult treatments. Given the age of your daughter at diagnosis and that she is older now may mean that they are looking at treating her more like the adult patient.

I am not going to outline the step-up and top-down strategies. There's lots of info about it and you seem to be a verocious reader/researcher. Start here for a good overview: http://www.medscape.com/viewarticle/560005_1

I was diagnosed with mild CD of the terminal ileum. Did the usual - Entocort and steroids for the initial flare. Then the arthritis kicked in, debilitating arthritis that had me using a walker. Found out I had spondyloarthropathy that was severely flaring and the GI and rheumy said Remicade. I jumped at it because I was to the point of even needing assistance on and off the toilet. After the 3rd infusion, I stored the walker in the closet and was back to relatively complete mobility. The side benefit was my guts were unbelievably NORMAL. I went from diarrhea 10-20 times a day and severe dietary restrictions, to formed stools 1-2 times a day. For the first time in 25 years [!!!!] I could eat raw fruits and vegetables [except for my nemisis Romaine lettuce].

My last colonoscopy showed only scarring in my ileum from the healed erosins/ulcerations. At that point I had been off Remicade for 9 months. I took Remicade for 2 years, 9 months. I eventually had to stop because it was no longer effective at dealing with my ankylosing spondylitis. I went to Humira and took that for 2.5 months.

Remicade gave me my life back. But in fairness, and because I have written about it here and you could certainly find it searching this forum, I am one of those people that not only developed lupus antibodies and lupus-like symptoms while on Remicade and Humira, I now have been diagnosed with lupus oputright. My GI feels I developed it from the Remicade. My rheumy thinks I had it underlying previously and was going to likely convert at some point. So who knows.

The biologics, especially Remicade, have grown in usage over the years. Therefore, more and more "issues" have come to light with them. As I have always advised, one must weigh the pros and cons in terms of ones medical conditions, previous treatments and responses and quality of life when deciding to take a biologic. I have thought long and hard about what I would have done knowing the conditions I now have back when told that Remicade was an option. I still would have taken Remicade. My quality of life sucked. My mobility was practically nil and I needed care in all aspects of my life.

Sorry for this rambling post...the best to your daughter and you! ~~ Ides


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


keenca
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/21/2009 4:33 PM (GMT -7)   
Wow those are some really excellent replies with a wealth of information. The only reason that I am posting is that my son was diagnosed with Crohn's disease at age 15. (he is now 19) He has not had any fistulas but had moderate inflammatory disease that required steroids and 6MP(similar to Imuran) for the initial flare. THis maintained him for 3 years.

His second flare was this fall while away at college.(talk about stressful for the family) Still no fistulas, but deep ulcerations by colonoscopy requiring Humira. This is also a biologic, anti TNF drug like Remicade. Like you, we were frightened by the potential side effects but the drug has given him his life back. He has only been using it for 2 months but he feels normal again after a miserable first semester at college. We can only hope that this will continue.

We have been seeing one of the top Pediatric IBD GI's in the world who happens to be near our home. She routinely uses the biologics in the pediatric age group for fistulizing and severe inflammatory Crohn's disease. She is fairly aggressive in treating IBD and believes that intestinal mucosal healing, discontinuing steroids as well as quality of life are important. Crohn's in the pediatric age group is unique in that growth issues, puberty and social issues are a concern.

If you read some of the excellent medscape articles as suggested by Ides you will find recent studies confirm that continuous rather than episodic use of the biologics is the way to go- and of course discontinuing the steroids.

Definitely make an appt to discuss your daughter's treatment as every case of Crohn's is different. It is so difficult to have a child with a chronic illness. Not a day goes by that I don't wish that I was the one with Crohn's instead of him!


Good luck with your decision and keep us posted.

Almost forgot, I am new the forum- did your daughter get the chicken pox/varicella vaccine when she was younger? My son as well as my 15 y/o have had it. We were instructed to get blood varicella titers on my son to be sure that he had immunity from the vaccine before starting the 6MP.

FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 2/21/2009 5:20 PM (GMT -7)   

Hello Keenca!

Just wanted to welcome you to the Forum.  What a great place this is!  I'm glad your son is doing so well and pray his good health will continue!  turn


Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/21/2009 7:43 PM (GMT -7)   

Thank-You all, for the excellent and DETAILED replies!! I address each here rather than multiple posts.

HI PV,

I'm glad to see that your husband is doing well on Remicade. It's very reassuring to hear success stories. You describe the fight against this disease very well when you call it "Russian Roulette". I do worry that I won't make the best decisions as you point out.

Hi lilcrohnieuk,

I'm glad to hear that episodic use has worked for you. I don't think that our GI would encourage that. I will definitely do as much research as possible, and Thank-You for your best wishes to my daughter. I too hope that she can tame this disease and have the kind of life she deserves. I hope I will be able to make the best possible decisions for her without reget. 

Hi Julia,

I've only had a couple of days to do any real research about Remicade. I've haven't come across any discussion about the "remicade induced lupus" that you contracted. That certainly adds another component to things. You seem to imply that it was a temporary condition, and is this why you stopped the Remicade? 

Hi Ides,

I'm so surprised that you as well have developed Lupus. This is the last thing my daughter needs is this to deal with. You seemed to stop the Remicade because another condition, not that it stopped working for you, is this correct? You also present a concern I have, that, what happens when you've been on all of the current (drug) treatments, and they've stopped working for you. How are you treating the disease now? 

Hi Keenca, 

I can really relate to what you've been through with your son. I'm wondering why you went with Humira instead of Remicade? I'm online with what your GI is saying, that treating the disease aggressively is the way to go. I really hope your son continues to have success and many years of remission. 

My daughter hasn't had the Chicken Pox, or the vaccine. We didn't even know that it was such a big deal until we read the Imuran pamphlet. Our GI told us that she is the first Crohns patient they've had that didn't have the Chicken Pox. We can't get the vaccine now, because she's been on Prednisone, and as long as she continues on Immunosuppressants she won't be able to get it. If she does contract the Chicken Pox, it will be a very serious problem. Our GI simply states that she will have to take the chance, as the risk is outweighed by the benefit for the disease.

Thanks again to all of you. I could really have gone on, but I know I'm getting long here.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/21/2009 9:32 PM (GMT -7)   
Has she tried taking large doses of fish oil?
Co-Moderator Crohn's Forum.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 4:31 AM (GMT -7)   

Ivy,

No never have tried fish oil. Why do you ask? I seem to recall reading recently that studies have shown that fish oil hasn't shown any benefit for Crohn's. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 2/22/2009 9:00 AM (GMT -7)   
Hi Tom,
 
Yes, lupus is the reason I discontinued the remicade.  Hopefully your daughter will be fine on remicade and feel wonderful without any of these nasty side effects.  I have been on humira since April 2008, so far so good.  Remicade works wonders for fistulizing crohn's, I have heard from many people that it gave them their life back.   Ask about the MTX along with the remicade.  It is a scary decision to make, but I do think it would prevent further damage to her bowel, and if she developes lupus - prednisone and MTX are what takes care of that.
 
Julia
 

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 9:31 AM (GMT -7)   

Hi again Julia,

I'm still abit confused about the Lupus. I haven't been able to find any info. on this as a consequence of Remicade. Do you know if this is common? You say that it was temporary for you. Could you explain that abit further? 

I just couldn't imagine getting a treatment for Crohn's and ending up with another serious disease. I'm very concerned about this.

Thanks, Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/22/2009 10:48 AM (GMT -7)   
Hi Tom,
Wow what a ball they have thrown at you now.

I am not sure about the Lupus and remicade but I have recently discovered that if you have one auto immune disease yours chances of developing another are greater. I don't know the numbers.
I am being tested for Rheumatoid arthritis and Lupus right now and I have never been on Remicade. From what I have read is that Remicade and Humira (very similar drugs) are used to treat more severe cases of RA and Lupus, so I don't understand how they cause it. These drugs are just so confusing..............

I am wondering why they suddenly want to switch to Remicade for you daughter. Has she started the Imuran yet? Maybe they just want to be more agressive from the get go instead of waiting. Plus I believe the remicade works quite a bit faster than the Imuran which can take months to work.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 11:35 AM (GMT -7)   
Hi Tanya,
 
Yes, recommending Remicade did catch me abit off guard. I think the reason is likely what you suggest. They are likely worried about the time that it would take for Imuran to get to full strength, (several months). That is quite alot of time, and considerable damage could occur. I will know more in the next couple of days. I'm hoping to speak to our GI tomorrow, but that's no easy feat. 
 
I'm quite confused by the Lupus/Remicade connection as well. I can't find any info. on that. I will definitely ask about it before starting.
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/22/2009 1:39 PM (GMT -7)   
Tom said...I'm so surprised that you as well have developed Lupus. This is the last thing my daughter needs is this to deal with. You seemed to stop the Remicade because another condition, not that it stopped working for you, is this correct? You also present a concern I have, that, what happens when you've been on all of the current (drug) treatments, and they've stopped working for you. How are you treating the disease now? 
 
Tom,
Remicade was initially approved for use in treating rheumatoid arthritis. Therefore studies as to Remicade's effects/problems were first brought to light from trials on RA patients. Since then other groups of patients have also been studied.
Many people receiving Remicade develop anti-dsDNA antibodies which are found in patients with lupus. The vast majority of the patients never experience any lupus related symptoms and these antibodies were generally only found during trials. In almost every case, those that did experience lupus like symptoms had those symptoms resolve once they stopped Remicade. The anti-dsDNA antibodies could not be detected 3-6 months after stopping the medication. In the thousands of patients worldwide treated with Remicade only a handful have been reported to develop lupus outright following Remicade treatments. That said, I do find it curious that three [4?] of us are members of this forum.
 
I stopped Remicade because I began dreading getting infusions because I felt worse following them. In hindsight, what was thought to be a worsening of my AS, was actually lupus flare-ups from the infusions.
 
As I said before my CD is a mild case. When I went on Remicade, I was started on Imuran at the same time. My guts have remained in remission since about my 5-6 infusion of Remicade. It is felt that Imuran is keeping my CD under control at this time. I am most fortunate. My AS however is a continuing battle that is treated with steroid injections, the Imuran and periodic usage of prednisone.
 
In regards to Imuran - I have a 74 year old friend that has had severe small bowel CD for 50+ years. Her major problem was frequent, severe bleeds from the small bowel requiring transfusions. She lost count of the transfusions. When I worked with her over the course of 7 years, she was hospitalized on average every 3-4 months for treatment of these bleeds. She started on Imuran 10 years ago. Six months after starting Imuran, she noticed a marked change in her CD related problems. She has not had one hospitalization or small bowel bleed since then. For some, Imuran really works!
~~Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/22/2009 2:39 PM (GMT -7)   
Monte, I ask because one of my surgeons is a big believer in fish oil for Crohn's. He reckons he saved a young patient with fistulising Crohn's from Rem, simply by getting him to take large doses of fish oil. Says the patient is happier and less run down too.
Co-Moderator Crohn's Forum.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/22/2009 2:42 PM (GMT -7)   
What kind of fish oil and what dosage does he recommend?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


keenca
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/22/2009 3:17 PM (GMT -7)   
Fallcolors,

Thanks for welcoming me to the forum. I am so impressed with the helpfulness and knowledge of the members!



Tom,

Our doctor gave us a choice of biologics, but she strongly recommended Humira for several reasons. First it is self-injectable so that my son could self administer. This gives a young adult a degree of independence from doctors offices. As the others in the forum on Remicade can tell you, it can take several hours to complete the infusions. Remicade is only every 8 weeks and Humira is every 2 weeks on average.

Second, Remicade is made from a chimeric mouse antibody and there is more of a chance of immunity developing. For this reason our doctor uses it it with low dose methotrexate. Humira is made from a human monoclonal antibody so there is less of a chance for immunity developing. There are certainly exceptions to this.

From what I have read, Ides is spot on about the Lupus antibodies that can develop with the biologics. But we didn't really have any choice since the 6MP had stopped working. We just keep our fingers crossed...

I asked an Infectious Disease Specialist what to do if my son's immunity to the chickenpox vaccine should wear off. He suggested that he carry the antiviral drug acyclovir (or Famvir or Valtrex) around and take it if exposed to the virus. Its not a problem for him now since he still has immunity. Even without chicken pox immunity we still would have started the biologics. What else could we do? You just have to have faith and hope there isn't a problem.

As for the fish oil, our IBD center recommends it once the patient is in remission. It can't induce remission but the Omega 3's found in fish oil have anti-inflammatory properties that may help maintain remission. Our doctor recommends probiotics as well as fish oil (1000mg-2000mg/day of total DHA EPA) once the patient is in remission.

Whew! Sorry for such a long post again I just get carried away.

Let us know how the meeting goes with your GI next week.


Keenca
( 19y/o son Crohn's disease- ileocolitis- mostly colitis, perianal- no fistulas or surgery
6MP failed after 3 yrs.,
prednisone during flares
Humira for 2 mos,
asthma- singulair, claritin,
fish oil, probiotics- FLoraQ- multivit, vit D, vit B complex, vit C, calcium

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/22/2009 3:43 PM (GMT -7)   
I don't know what dosage he put his other patient on, but I saw him a few days ago and he put me on 15 fish oil capsules a day (5 tablets three times a day).
Co-Moderator Crohn's Forum.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 6:22 PM (GMT -7)   

Ides,

Thanks very much for explaining everything so thoroughly. I hope the liklihood of developing Lupus is extremely small.

I'm surprised that you consider yourself "Mild". (That's encouraging). I just wouldn't think of someone with mild Crohn's being on such sophisticated meds. 

It's encouraging to hear of success stories with Imuran. I'm still not sure which med. we'll get.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 6:37 PM (GMT -7)   

Hi Keenca,

I've read about the differences with Humira and Remicade make-up. Like LDN, I'm not sure if Humira is available in Canada. Would you happen to know how they compare in terms of effectiveness? Is one considered better than the other?

I've never heard of taking an anti-viral drug if exposed to the Chicken pox virus. I'm still extremely worried about this aspect. Contracting Chicken Pox while immune compromised can even be deadly. But as you said, we likely don't have choice either, and just have to hope it doesn't happen. 

I had kind of written off fish oil, but I will certainly get some. I can't wait to tell my daughter I have more pills for her.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 6:39 PM (GMT -7)   

Ivy,

I will certainly give the Fish oil a try. I guess it's too early to tell if it's helping you. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.

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