This forum has been making me nervous lately!

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/4/2008 11:10 PM (GMT -7)   
Please calm my fears. Maybe it's just because I'm flaring and I'm on Pred and dealing with a lot emotionally.

Anyway, I keep reading all these negatives about TNF blockers (Remicade, Humira, Cimzia, etc). The long-term effects seem to NOW be getting exposed (and rightfully so since it's a fairly new drug). My first flare hit hard and fast and I went downhill so fast, they could find nothing but Remicade to stop me from fistulalizing. I developed 3 in 2 weeks. Remicade was my "miracle" drug and gave me my life back, but now I've developed antibodies against and have had to move onto something else. I'm going to be starting a trial for ABT-874 which actually is a drug that interferes BEFORE the TNF phase. It has been tried on another condition and is moving into it's later phases, but it's very promising. I was told that since I developed the antibodies to Remicade that I have a very ltitle chance of Humira or Cimzia working and that Tsaybri, though it has worked for some, is not as promising as originally thought to be. So, I opted for the trial.

Anyway, after reading all of these posts, I am so very hesitant about the clinical now. I KNOW I need it. I'm on Pred and holding onto a thread. I'm back to taking pain pills and Xanax to keep me calm and I need something and soon. It's sort of my last hope. In addition, I'll get a ton of thorough testing before I start the study, which to me.. is knowledge about my gut. I'm anxious to see what exactly is going on and where considering how badly I flared this summer and I'm still flaring. The problem is I read all these posts about how this is now proving to be dangerous, and this causes cancer..etc...etc...etc. I JUST started being able to have a family. I now must weight my health issues to taht of my family as well and it's just been bothering me for the past few days. I'm scared to death of the prospect of cancer or something dangerous from one of the trials, but what am I to do?

Yes, I'm considering some drastic diet changes, but I just have yet to find something that I feel I can tolerate and what would work. I eat fairly healthy (well, while NOT on Pred!!). I'm a big fruits and veggie girl when I can have them. I'd say my downfall is preservatives, but yet I maintained a very length remission while on Remicade and eating healthy. I avoid a lot of things already, but I've been looking into a possible gluten-free diet. I know it's not a cure and I'm very very apprehensive about some of the studies or the stories on how diets changed peoples lives, but if it will HELP and give SOME relief, I'm willing to attempt it. But, I realize that it's possible it could give no relief.

I'm just a bit lost and nervous. I know if this clinical fails or I don't respond, we don't have much to deal with. I have yet to try Imuran, so it's still on the list, but there isn't much left for me to try and I'm nervous about that. My disease is primarily rectally and in addition, they have found disease in and around my TI now, well, let me say is suspected as I've begun to have quite a bit of pain in that area nad the GIs all say my entire colon is tender. They've never found anything in my small intestines.

Sorry to ramble. Maybe others can give me insight. I'm also considering a pain management doctor. I think it might help with my anxiety too as even just KNOWING there is 10 or 20 pills in the medicine cabinet gives me a sense of relief that if I ened one, it's there. I do not take many pain pills AT ALL. In fact, I can't tell you how many times I've been offered and I've either asked for a lesser strength or refused it all together. Only ONCE have I asked for a stronger pain med and that was when I got discharged in July and was on Dilaudid all week. Normally, I just take 2 tylenol and "manage" the pain. I hardly ever take anything besides that.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 10/5/2008 1:09 AM (GMT -7)   
(((hugs))), Kaycie. I've no advice to share. Your sound to be between a rock and a hard spot. Quality of life w/your family might well be worth more than possible limited quantity. I don't know. Sometimes we just have to do what we have to do and pray a lot. (((hugs))) and prayers are on their way! Good luck and God bless.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 10/5/2008 2:13:33 AM (GMT-6)


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 10/5/2008 5:09 AM (GMT -7)   
Hi I know it is hard to make a decision on meds and especially when a person has so many fis. problems on top of everything. Is the new med abatacept your going to go for? I don't know what to suggest but with the fistula's you either would need surgery or some kind of med I would think .Where are your fis. 's located,all in one place or scattered throughout the intestines? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/5/2008 5:55 AM (GMT -7)   
It's natural to worry about the possible side effects listed, but in my experience I have met more people who have had a complete and positive turnaround on medications like these. There will always be that possibility of contracting the more serious conditions, but it's really up to you in the end to weight the benefits with the risks. I'm on a TNF blocker right now and do notice a good difference. Of course I am losing much more hair than is normal and feel pretty tired at the moment, but I feel exponentially better the majority of the time. I know you can't have these but with the other medications offered..
I wish you the best of luck in your decision and hope no matter what that you simply get better..I really hate that you're even having to make this kind of decision.
As for diet, I think it is vastly underestimated in its ability to change. I know it doesn't work for every last person, but it's worth a try(the SCD for example) if it means the possibility of feeling better isn't it?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/5/2008 9:19 AM (GMT -7)   
Thanks guys for giving me some encouragement. I realize the risks are small for cancer, but in my life, I've seemed to have fallen in all the small risks, so it's a bit terrifying. I was so healthy growing up... hardly ever sick. And, since I turned 21, I've had a retinal detachment that required emergency surgery, been dx with Crohn's, dx with PCOS (Polycystic Ovarian Syndrome), went through infertility for 3 years, delivered twin girls nearly 3 months early, and lost one of my daughters. My body and emotions have been through SO much and when I'm flaring hard like this and on Prednisone, my emotions just seem to go all over the place.

Gail - My fistulas are currently NOT draining. I can still find the holes, they've been there since nearly 3 years ago. Remicade helped dry them up. They are all pretty much in the same area and run from my rectum outwards. One is in the perineium, and the other 2 are off to the side of my girly parts. Those were the most draining and infected ones. I also have a skin tag and when I flare, my rectum tends to swell to the point of being near swollen shut. So, though it's diarrhea, it feels like constipation because of all the inflammation. I realize I'm likely to get an ostomy in the next 10 years and that doesn't so much bother me. I just keep biding on hope and prayer that they'll find something else new.

Oh, and the try is called ABT-874. I just saw the one from Bristol Myers Squibb for the abatacept. I don't know if that's the same drug or not, I don't think so though. BMS (Bristol Myers) is literally down the street from me and I've heard NOTHING on this trial, I just read it in one of the CCFA brochures as I was cleaning out my desk drawers last night.

Thanks again....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/5/2008 10:43 AM (GMT -7)   
Hi Maybe some diet changes will help there are a few different ones to try . Just wishing to say though a person cain't stay on pred. forever so I am hoping you can get some good thoughts going towards your next med. If you care to I would like to know more about the trial drug .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/5/2008 11:13 AM (GMT -7)   
Have you ever tried flagyl?   My rectal inflammation responds really well to it, and it might even help your fistulas.    Also have you ever tried any rectal meds?    I'm sorry that you are going through all of this.  Hang in there.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/5/2008 1:12 PM (GMT -7)   
hi I have been on remicade for 5 years. Its a wonder drug. I don't let the side effects worry me.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/5/2008 1:14 PM (GMT -7)   
Just wanted to send you hugs.

I relate a lot to what you are saying. I am on Xanax for anxiety and Percocet for pain (following Dilaudid in the hospital in September), for the first time, as well as my usual Prednisone. I am all over the place emotionally, and making recent treatment decisions was HARD for me.

I don't have the fistulas that you have, my crohn's is limited to my colon. After failing Remicade and recently Humira, I was struggling to choose between Tsabri and colectomy/ileostomy. I was sicker than I have ever been, both my gut and the prednisone side effects were causing severe muscle weakness, and was in the hospital for 2 weeks. During that time, I was put on Cyclosporine as a temporary rescue medication, and was able to be successfully temporarily stabilized. Due to the cyclosporine, I was ruled out for Tsabri, but was relieved, as I think I knew that surgery was going to be the right choice for me, but it was such a hard one to make.

This is such a tricky disease -- everyone presents differently, everyone responds to different things, and therefore decision-making around treatment decisions once you reach a certain point can be so overwhelming. Just wanted you to know you are not alone. I am 99% confident in my decision to have surgery (scheduled this upcoming Friday, wish me luck), but I am still fighting that 1% doubt, hence the Xanax.

Try to be kind to yourself, surround yourself with a solid medical team of experts who you trust, make the best decisions you can, and in time things will hopefully become clear.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade, weekly Humira
Late 7/08, down to 5 mg pred, and big flare, Humira failed
2 week hospitalization in 8/08
Now on Pred 25 mg, cyclosporine, percocet, xanax
Surgery scheduled 10/10/08 to get rid of this colon


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/5/2008 2:39 PM (GMT -7)   
Pibbin - Thank you! You totally get what I'm saying. I think because I was in a fairly lengthy remission (2 1/2 years), that I got "comfortable" and thought "I can do this!" and then this last flare hit me hard. I had to be taken to the hospital by ambulance. THAT was difficult. I've NEVER been in an ambulance and when I got into the ER, they loaded me with Dilaudid and Phenergan. I dropped 8lbs in 7 days, they discussed TPN with me, explained surgery was on the horizon, etc..etc.. It just seemed so doom and gloom and it has gotten me down and hard. I was off work for 8 weeks and a lot of other emotional and stressful things hit me during that time period too. It's been SO hard deciding on the trial or Tsaybri. I'm like you.. 99% confident this is what I NEED to do, but nervous as hell at the same time. My goal is to do the trial, stabalize, then wean to something pregnancy save and then finish having children (we require IVF - another long story), and then we'll get back to the business of my health. Good luck with your surgery!!! I know that is down the road for me.. I just don't know how long....

chroniemomx2 - I've tried lots of drugs. Here's my list:
Flagyl
Cipro
Rowasa
Corticosteroid enemas
Prednisone
Colozal
Entocort
Lidocaine rectal ointment
Nifedipine (fissures)
Remicade

At one point I was on 30+ pills per day. I still have some "smaller" drugs left on the table, but it's not promising with as bad as I'm flaring that they'll do much of anything to throw me into remission. So, this is why we're headed towards the trial. We might consider Imuran following the trial, but right now, I need something strong to get me to remission.

Gail - I'm definitely looking into diet changes. I'm considering going on an all liquid diet for the next few days to let my bowel rest. I have to be off Remicade for 8 weeks and am "holding" on the Pred until the trial starts. I'm thinking if I drink boost and eat some low residue foods or just easy foods that I know of for the next couple of days it'll help. But, for the long-term, I'm trying to figure out what is best. Such a hard decision. Changing my diet would be changing my entire families diet and my husband is NOT one for that kind of change! My daughter is a good little eater, and now is the time I can set her diet on the path of mine...but my husband... he'll be left to fend for himself... again, now I have a family that this affects and I think it's part of all my anxiety
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/5/2008 3:25 PM (GMT -7)   
Hi I know what you mean it does effect our families too and that can be a worry on top of the Motherload we already bear. Your daughter might benefit by adding some of the low residue like fish and your hubby too . Talk it over with him try to get or make a list up of foods that are low residue. Sounds to me that you have a plan forming for meds. ,go into it with confidence and the idea that is the best you can do for now. Try not to get too far ahead of yourself and things will go more smoothly. What is your hubby saying so far about your choices? I think your getting back to the place where you know you can, and give that little cutie of yours a hug from us all . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/5/2008 3:50 PM (GMT -7)   
Kaycie, hang in there! Sounds like you have a good plan.

I am fortunate that my first symptoms and flare didn't occur until after the birth of my second child. I feel such empathy for you and those others who have to factor fertility and healthy pregancies into all the craziness of treating their Crohn's.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade, weekly Humira
Late 7/08, down to 5 mg pred, and big flare, Humira failed
2 week hospitalization in 8/08
Now on Pred 25 mg, cyclosporine, percocet, xanax
Surgery scheduled 10/10/08 to get rid of this colon


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/5/2008 7:34 PM (GMT -7)   
Gail - I'm researching up on low residue. I pretty much practice that as it is now, minus a few things off the menu as they are triggers. One thing I find conflicting is that peanut butter is my saving grace. I typically live off peanut butter and boost when I'm really sick. So, hmmm... do you have trouble with peanut butter? Am I missing something? I use reduced fact creamy. I try and get all natural too, but sometimes the all natural ones have bits of nuts in them. Do you know of any good sites I can visit? What about some good family recipes? I'm still looking into the SCD. I'm VERY apprehensive about that one, but what DOES reassure me about that is that even the author admits it won't work for everyone.

Pibbin - Thank you again! I dealt with infertility BEFORE my Crohn's dx, so the Crohn's was like a double whammy initially. I got set back then, but I didn't have a family to worry about. Now, I have 2 beautiful daughters, one in Heaven and one here with me, and I cannot imagine not having anymore children, so the recent flare came RIGHT when we were planning to go forth and have more children and then we were going to get gung ho on my Crohn's and get me back in 100% order (I was in remission, but you know - things were just headed south). Well, obviuosly, those plans have been put on hold indefinitely. You do what you gotta do I guess. It's frustrating to say the least. I'm thankful for my daughter here on Earth though. Her smile and laugh on the worst of days is what makes me feel whole inside. My mom and husband helped to make sure she came by the hospital everyday to see me for 8 days in July. She is what makes me get up on the worst of days...yet she knows when mommy doesn't feel good and though some days are a struggle, I couldn't imagine it any other way..and I can't wait to have a few more children. I think it's all working out in that department though as my daughter will be a bit older when she becomes a big sister and that will be beneficial for all of us...the understanding and the ability that she'll have to be able to "help."

Anyway, thank you all for the positive thoughts. I'm just scared, yet I know it's what I need to do....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/6/2008 5:16 AM (GMT -7)   
Hi Kaycie Well even though I have been eating low resd. for some time now I haven't looked up any sites or recipes . Chicken and fish are foods that can be quite versatile in the kitchen and white rice. I do make a lasgana that I like but if it is full of things I strain it and add paste, I just make sure my veggies are cooked really soft for me. You could look up some homemade soup recipes though that might go well with your family. My sister used to make lots of soups and freeze them .Cooking is not one of my big loves in life .I do use hamburg alot as it is minced meats. Hope you can find someone on here that is a cooking crohnie. By the way Kaycie I found being on pred. made me worry and get upset easy so hope when you get off it you will settle some. Your daughter sounds like she is quite a treat and they do give back bigtime in giving us motivation. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/6/2008 7:59 PM (GMT -7)   
gachrons said...
By the way Kaycie I found being on pred. made me worry and get upset easy so hope when you get off it you will settle some.


Yes, I'm noticing that. My family doc gave me Xanax on top of my Celexa, so I've been being smart and USING it lately! I hate taking medicine, and when it's something I'm supposed to take "as needed," I tend to NOT take it. If that makes sense. Anyway, the past few nights, I've taken a pill at night to settle down. I've been getting a bit better rest. I'm really not feeling well though and that's the main reason for my worry I think. I'm just scared of the unknown, as that is what the trial is and no more Remicade just simply scares me, even though I know it's not helping anymore.

Thanks for the tidbits on the diet. It's pretty much what I've been following. One thing I think I need to completely cut out is soda. Carbonation seems to not be a good thing. Caffeine needs to go too, but it's a hard thing these days! We'll see... I just need to refocus and get back on track. It's just hard when you are thrown out there like this... I know you understand!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 10/6/2008 8:08 PM (GMT -7)   
Hugs Kaycie!

I am currently on prednisone--40 mg a day--to help with my eye inflammation. I also am on Methotrexate and started Imuran about two weeks ago or so.

I have a really hard time while on the pred. I have been on and off it (more on) since February and everytime my eye flares, the doses and length of time seem to get longer and longer. I get so emotional while on it and it seems like I can go from sad to upset to ok all within a short amount of time. I have been told this is normal while on this drug, but it still is NOT fun.

If the Imuran and MTX do not work for me, I will probably end up on Remicade.

Anxiety is also a real issue for me and the pred seems to magnify it. I am also on Xanax and Prozac and they help me quite a bit!

Take care and know you are not alone. Sometimes knowing I can come here and relate to others is about all that keeps me sane!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/6/2008 8:26 PM (GMT -7)   
Kaycie I have no answers but just wanted to say I completely hear you with your concerns and thoughts about the new drugs. I'm on 6MP right now, eating gluten and dairy free and trying to avoid remicade/humira. SCD hurt my stomach, but maybe I did something wrong, I don't know.

One thing I would say regarding the new drugs is that we tend to hear the bad stories because most people doing well on these drugs aren't here, they're out living life and forgetting about crohn's!

So, whatever you decide...if you are feeling well make sure you visit and let us know!

Good luck and keep us updated.
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 10/6/2008 8:32 PM (GMT -7)   
Rider - You are SO right! I haven't been on the boards for nearly 2 years...since I was in remission. Then I got sick, and here I am again. Thanks for that friendly reminder!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/6/2008 10:17 PM (GMT -7)   
Hi Kaycie,

I have a lot of the same issues that you have. I could especially relate to the fact that no matter how formed (or not) the stool, the rectum is so inflammed it feels impossible to go and... hurts like heck. I took the CortEnemas for a long time. They helped a little - enough to make them worthwhile - but I ended up hemmorhaging and I always half blamed it on the enema. So, my doctor has prescribed a compounded budesonide suppository. It's 3mg and, though he initially prescribed at 2x/day, I only do one at bedtime. That seems to help more than the enema. My theory is that the enema travels further into the colon, which is good, but my rectal region really needs the help. With the suppository the budesonide stays right there as it melts.

Also, Abatacept and ABT-874 are different. Abatacept, as you said, is BMS and is somewhere in phase3 testing. ABT-874 is an Abbott Labs drug in phase 2. I was considering joining that trial myself. I just quit Tysabri, failed Remicade and failed Humira. There is a 4 month wash-out from Tysabri to join the trial, so in 3 months I'd be eligible... if I haven't chosen a different path by that time.

I know how frustrating it is. I too figure I"ll end up with an ileostomy at some point. But, then again, Prochymal really helped me. So that gives me hope for new meds that might come out in the next 10 years.

I really hope something helps you soon. You've been through so much lately. Take care of you best you can!
--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
--single mom to 10-yr-old girl

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