Remicaid/ other words fear...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

molly m
New Member

Date Joined Jan 2006
Total Posts : 17
   Posted 8/1/2008 10:16 PM (GMT -7)   
Hi everyone,

So the forum says I'm a new member because I suppose I have posted relatively few times, but I feel like a veteran because I've been reading these posts really since I was diagnosed at 13. It's been 10 years, crazy. Anyways, like I said it's been 10 years, I'm 22, and I've been a student for the past 4 1/2 years. I finished up a communications degree but my real goal was nursing which I still haven't finished, but I'm determined. So as far as medication I've been on pretty much anything and everything. I started out when I was first diagnosed on only Pentasa which worked fine for I want to say like 4-5 years. It was great, then I started slipping and missing doses and stuff. I still don't know if that attributed to it, or if it would have happened anyway. Can't live in the past I guess. So after that my Dr's put me on prednisone for a while with a taper, I went into another remission for a few months. But really for the time after that I was "okay", I was definitely functioning but I felt like I always had a cloud over my head. A Crohn's cloud. Some called it depression, but I think it was, or is, Crohn's Cloud. It should be a medical diagnosis. : ) So I went from living a little maybe starting my freshman year or college, to really by the end of it just existing. Now my life is just straight scary. I have remicaid infusions every 6 weeks, 6MP failed, I even participated in a clinical study, humira, nope, methotrexate, entocort, nothing's worked. : ( I had surgery to divert my colon away from a fistula they thought was getting bad, that turned out to be pretty horrible because the surgeons gave me the impression that the ostomy would improve my quality of life, but all it did was put me in the bathroom for different reasons. I'm at a complete loss guys...
I'm only 22 and I have no direction on where to go from here. I want to try some natural remedies, or spiritual ones, because I don't see anything left. The Remicaid might last about a month and give me some quality of life, but its's for one month at a time usually, so it's not enough to hold down a job, or worst of all for me to stay in nursing school. All I want to do is finish. I feel like giving up, I have no motivation. My dr has me on pain meds as needed, especially now because I just got discharged from the hospital for terrible fevers probably just from inflammation, and I find myself just wanting to take them more and more. That scares me too. I don't want to be addicted, but it's the only thing that helps sometimes. I'm so lazy, never want to do anything. It's so not me, I'm an athlete, and I'm a fighter who wants to face anything. I don't know what this disease has made of me. Anyway, enough ranting, my med issues..
Since all the other meds have failed, in the western world anyway, my doctor who I love dearly has been talking about Tysabri, which is the MS drug semi recently approved for Crohn's. It sounds great in theory, but it carries the risk for this deadly encephalopathy called PML. I know it's been associated with other immune supressants RARELY, but with Tysabri it's a huge warning. I'm scared. I'm scared that this is my only option left, and that I'll be forced to take it even with the risk of this virus coming up that makes you a vegetable or kills you in 4 months. ah! That's so scary. I know all of these medicines can have terrible side effects, and knock on wood I haven't had very many bad ones, but I'm so afraid that this wil be "the big one". Do any of you have annny advice for me, whether it be on depression, meds, life? Another thing people suggest to me all the time that I'm to proud for is social security disability. Since I can't work and what not. Any experience with that? I'd really appreciate anything anyone has for me, I'm struggling here. : / Thanks a lot in advance and lots of love...


Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 8/1/2008 10:55 PM (GMT -7)   
Hi Molly - Crohn's cloud is real. It comes from inflamed sinuses caused by Crohn's. The sinuses don't necessarily hurt - they could just have a bit of pressure or not even that. The cloud is the same as if you had an allergy or the flu without any other symptoms. It is due to an activated immune response in the sinuses with no real reason except the common mucous membrane connection between the gut and the sinuses. You might get some relief with anti-histamines, but that is just a band-aid. Even so it might work for you. It might also help the pain if it is really from gut inflammation. One other thing to try for that is vitamin E. Not because it is an antioxidant, but because it has been shown to decrease the IgE (immune globulin e) in the blood which triggers the inflammation in odd spots. This is safer than the anti-histamines and actually works on the source of the problem. Unfortunately, vitamin E will not completely erase the IgE, so some inflammation will remain. Other things to try include diet. Such a short word for such a major change in your life. Some people have had good results from eliminating gluten containing foods from their diet - wheat, rye, barley and oats. That alone makes eating out a challenge, but for some people that is not enough. If that is you, have a look at for a diet that has helped a number of people. You also have to make sure you take a probiotic containing lactobacillus sp. bacteria (any good ones are refrigerated and if you can get an enteric coated one, that's better). You also should get a multivitamin/mineral supplement. Your damaged gut does not pick up the vitamins and minerals that it used to and the inflammation eats up large amounts of vitamins C and E.

molly m
New Member

Date Joined Jan 2006
Total Posts : 17
   Posted 8/2/2008 5:08 AM (GMT -7)   
thanks for the dietary information, thats something I need to be more careful about. I do take vitamins and probiotics. With the "crohns cloud" though I was speaking more of a depression that kind of looms over me that I can't shake..

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/2/2008 5:25 AM (GMT -7)   
Hi Molly There is Cimzia, abetacept,some people are trying LDN and a few other things on the market. I know the side effects can be scarry for the meds we take. Ask yourDr. about other choices. You are young to have to deal with all this and I know I was worried when I had to go off Imuran . and Rem. so I know how difficult this can be going from one med to another. I had resection which helped me and had 2 fistula's and they were worisome for me. Your going threw a rough spot right now but things will get better, maybe the Rem. will work for a long time who knows. Hope things look brighter for you soon. If you need social services help reach out and get some until you can do the things you want to .Keep in touch and let us know how your doing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/2/2008 6:20 AM (GMT -7)   
Hi Molly,

I've also read about stem cell trials. Search fro "stem" in the "Search Site", above, to find more. There was a post of 7/26 about it.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 8/2/2008 7:27 AM (GMT -7)   
What about another clinical trial? if you check the site, you can search for your location and Crohn's. See what pops up. If none of those work, Cimzia would be good to try - It is also approved. You can ask all you want about Tysabri. I know how scary it is!!!!! They are forced the label it the way they do, but since it's been used as a monotherapy, not a single person has developed PML. As of April there were 22,000 people taking it on it's own. And, the risk for other infections might be less than it is with a TNF-alpha blocker, according to my doctor.

Hang in there. I burned right through all the meds too and I know how scary it is! An ostomy is not the end of the world, but I know how sad I was to think I had no choice. Tysabri has pulled me out. I am not in perfect remission, but I have a quality of life again... I've even been able to run a few times! Surgery and exsessive steroid use, I have been told by my doc, carry more risk than Tysabri as a monotherapy. I went through a period where I had a lot of anxiety about it. But, next Fri will be my sixth infusion and I am so much happier...

Best wishes!

--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl

Regular Member

Date Joined Dec 2003
Total Posts : 98
   Posted 8/7/2008 8:52 PM (GMT -7)   
My daughter has taken wellbutrin for her crohns and has been in remmision for five years, this might be a option that would help both with the depression and help you gain remmision. Let me know if you would like some information.


New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/18/2008 10:51 PM (GMT -7)   
Hey molly, i like you have been reading these post for years. But this is my first time writing on one of these. I too have run out of options.
I am 21yr old male, i was diagnosed with crohn's when i was 11. I did remicade for years and it worked like a charm. about 2 years ago it started to not work anymore, thats when my current flare up started. Ive been miserable since then. I tried humira. no luck. in and out of hospitals for months. Finally my docotor brought up tysabri. We talked about it and she pretty much said it's the best option at this time. She explained to me how it would work for me. After getting home from that doctor's visit i began to do research on the drug. And jsut like you the side effects scared the junk out of me. Im still scared. But the chances of getting the pml are low.
Ive gotten to the point where i jsut dont wanna do anything anymore, im depressed, i dont remember what it feels like to feel normal. i lost so much weight, im weak, im not active like i used to be. I feel like i have to give this drug a try.
Have you talked to your doctor anymore about it?

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/19/2008 5:28 AM (GMT -7)   
Hello RossP!! Welcome to the Forum!!! Please keep posting. This is a great place to share all that you wish to, get good ideas, and maybe help others too.
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 1:45 AM (GMT -7)
There are a total of 2,905,646 posts in 318,876 threads.
View Active Threads

Who's Online
This forum has 158234 registered members. Please welcome our newest member, skylav08.
193 Guest(s), 3 Registered Member(s) are currently online.  Details
Girlie, 142, Labradorite