Tried everything..now what?

[Iya]

I have been on Remicade, Humira, Cimzia, and now Remicade again. However it's not working. I get about 3-4 weeks out of 8 weeks that I feel okay. I had a CT scan which showed about 1 1/2 ft. of my intestine as "nasty" as my Dr. put it. I also have oral crohn's which is flared up at this point as well.

My Dr. wants me to join the study for the "improved" Tysabri. But I am very hesitant to do so because of the side effects.

When I ask him about surgery he said its an option, but is afraid it won't help my mouth.

Is 1 1/2 ft. a lot to take out? I am 24, recently married, and would love kids in the near future, which is not possible on Tysabri. However, I know it's more important to get my health under control first. I am struggling, in pain, and don't know what to do.

 

[Jennifer]

So the oral Crohn's has flared up but do you and your doctor think that medications could control that portion at least? I had almost a foot removed and a few more inches isn't the end of the world. You have A LOT of small intestine and shouldn't suffer from shortened bowel or anything like that.

I've never heard of that drug before and I admit that the side effects would scare me too. I've had surgery before and in all honestly, I'd have surgery again before chancing the very first warning about that drug. I plan on having kids too and I can't do that if I become severely disabled (brain damage) or if I'm dead. link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000289 I know it says that its rare but I'd still worry especially since it says your risk increases when you're taking drugs like you and I are already taking (immunosuppressants). You'd have to come off of those drugs and how long after you're off of those drugs is it safe to start taking this newer drug? I'd have to really trust my GI doc before I chanced taking that (this is just me, its your life, your choice).

Is it possible to take out the messed up portion of your intestine via surgery and then continue medication (via different combination/dose) for the Crohn's in your mouth? I've never had my mouth affected by Crohn's before (unless a couple canker sores here and there from time to time count) so I don't know what to tell you really.

I'm with you, I don't like the way it sounds ESPECIALLY when the doctor says that they would like you to join the "study." Study on someone else doc (that's how I feel).

 

[ThanksP]

I'm curious what they mean by "improved" Tysbari. I'm guessing it's improved without that scary side effect of brain disease...

I'm in the same situation as you are right now. In fact, I'm waiting to hear from my doc tomorrow regarding a clinical trial he thinks I should participate in. I have no other options at this point, no more meds to try and I can't continue to live the way I am. If you believe surgery may be an option for you, then I would definitely get a second opinion. Best of luck to you, I hope you are able to find a solution. It's frustrating when everything has failed. Hang in there!


For me, personally, I'll let them "study" me if it will brighten the outlook for future generation of Crohnie's. Look at Mr. Ziggy for example. But everyone is in a different place in life.

 

[Nytefyre]

There is a study drug out called Ustekinumab (Stelara). I believe it is FDA approved for psoriasis. It is currently in phase 2b for Crohn's. Centocor, Inc is the sponser. Protocol # is C0743T26. This is the Protocol title:

A Phase 2b, Multicenter, Randomized, Double-blind, Placebo-controlled, Parallel-group Study to Evaluate the Efficacy and Safety of Ustekinumab Therapy in Subjects with Moderately to Severely Active Crohn's Disease Previously Treated with TNF Therapy.

Maybe something like Ustekinumab would help? The study is 11 months long. I had to have three filmed c-scopes with 18 biopsies each time. Infusion took like an hour or something. It seemed to help. I still had bleeding on and off, but most of the other symptoms were in check.

 

[Iya]

Nytefyre, unfortunately I don't think that study is available in my area. Thank you for the thought though!
Thanks CrabbyRelish and ThanksP your input really helps!

 

[ThanksP]

Nytefyre, thanks for that info. I see it has 112 different locations so there has to be one close to me. I'll ask my doc about it!

 

[Nytefyre]

No prob!

I know that Dr Douglas Wolf in Atlanta is running the Ustekinumab study that I was involved in. He is a part of Atlanta Gastroenterology Associates. Good luck if you decide to give it a try!

 

[lamor32twigs]

It was interesting reading your post, because I am having a hard time finding others who have bad crohns in their mouth. I too have it very severely in my mouth. There was a time not long ago I thought IV nutrition may become my only option.
Cimzia doesn't seem to control mouth issues to well.

As for surgery I had a bowel resection and it defiantly was one of the better things I have done. Despite the fact that it returned in my intestines, it still relieved me for a quite some time of the major issues I was having.

As for Tysabri, I don't know that it is a new version, I think it just was just re-released with a new black box warning label.
It does have a change of causing PML, however, many of the TNF's we take and methotrexate increase our chance of this happening.
There are lots of patients receiving Tysabri for MS out there with little side effect, but less using it for crohns.

Have you tried cellcept? I used it for a while and it did seem to make some difference before its effect wore off.

Best of luck to you in your decision.

 

[Iya]

@lamor32twigs: Thank you so much for your reply. It is so hard to find others who have severe problems with their mouth. It is so frustrating! I was put on Thalidomide for my mouth for about a year, it cleared it up, but it obviously came back.
How long did the surgery benefits last for you?

 

[lamor32twigs]

Interesting about Thalidomide, I might have to see if I can give that a try. I would take about anything to help improve my mouth.
I have a grapefruit tree in my backyard with yummy, ripe fruit on it I couldn't even imagine putting in my mouth. The pain with citrus is unbearable.
You are soooo right in the mouth crohns being frustrating. My GI says it is terribly hard to treat...I believe him. Nothing seems to touch it.

Surgery...well...the relief was short lived. I knew my crohns returned within months, however, they were able to remove a huge fistula I had as well as some strictures in my intestines. Most of my symptoms were relieved for at least 5 years. Now, 15 years later I would consider it again if I knew I could get some good relief. I am sick of being a slave to the toilet.

 

[Iya]

My GI referred me to an Oral Dermatologist who prescribed Thalidomide. It's a scary drug, after about 6 months I started to get numbness in my legs and feet. After a full year of it, my mouth cleared and they took me off of it, because it's not good to stay on!
My GI recently prescribed Pulmocort, which is a steroid for Asthma (obviously not why I was using it). It is a liquid which would normally be used in a breathing machine. However, he instructed me to rinse it in my mouth and swallow to see if it helped with the sores. It did seem to help, maybe talk to your GI about that before trying Thalidomide.
Glad to hear that you had some relief. I am seriously considering surgery. I just hope my Dr isn't too mad that I don't want to do this study, it's a phone call I'm dreading How much intestine did you have removed?

 

[lamor32twigs]

I can't imagine your doctor being angry at you for not wanting to try this med. You have a whole life ahead of you and those may be side effects you don't want to risk.
As for surgery, I believe I had about a foot of small and a foot of large intestine removed. This also included my ileocecal valve.

thanks for the info on the meds for my mouth...I am going to look into trying one of these.

 

[spingirl]

I am going to start a new thread about the mouth thing...so many questions.

Just curious - once you have your symptoms under control and stop taking Tysabri - then can you get pregnant after a period of time? I know its not much consolation now but there are other ways to have children. I adopted my daughter (after giving birth to my son and being too old to conceive - not CD related). I wonder if you could talk to your gyno about some options. You may not be well enough to do it but the first thing that comes to mind is taking some of your eggs now - before you start the drug? If there is time? Not sure if its feasible. They might not touch you during a flare but I am just throwing it out there. Yes, the most important thing is to get your health under control...the rest will all fall into place. Have faith.

 

[Iya]

Yes, the mouth ulcers are a complex issue! About a year ago, my face was so swollen, every day for about 6 months or so. All was related to "Oral Crohn's". My lips would swell also, definitely unattractive!

 

[Iya]

SO....my Dr. is not upset at me not wanting to try the Tysabri study. Now he wants me to try Methotrexate. Any thoughts on it?

 

[lamor32twigs]

Weird...one of the first symptom of my oral crohns was lip swelling!

I was on injectable methotrexate for awhile. Seemed to work ok, but effect wore off. Make sure you take extra folic acid with it.

 

[Iya]

I actually had people think I had lip injections because they got so big lol. I have bigger lips anyway, so the swelling looked ridiculous!
I suppose I will try the Methotrexate, do the injections hurt?

 

[lamor32twigs]

To think people pay for big swollen lips! Mine were so lopsided it was crazy.
The mtx injections didn't hurt at all...very small needle.

 

[Iya]

Too weird...the left side of my bottom lip was always bigger lol

 

[pattinmaine518]

My daughter is in the same boat... nothing works.. facing another surgery for illeostomy, does not want to go that route again....One of the Docs reccommended FK506 ( Tacrolimus) Anyone hear of this???

 

[lamor32twigs]

Sorry to hear about your daughter.
I have used tacrolimus ointment (protopic) on the corners of my mouth to heal the sores. It was amazing how fast it worked. I have never taken it orally though. I know there are some scary side effects, but may be worth trying before surgery.

 

[Lisa]

the only Protopic I ahve used is the stuff out of a tube - found out the hard way I can' only use it in small spots - put too big an area (more than a couple square inches) and I was in agony from the burning!

As for being on Remicade - has your doctor considered or talked to you about decreasing the amount of time between infusions? If you are getting 3-4 good weeks, if you drop down to 6 or even 7 weeks apart maybe you will have more good than bad? And not let the remicade levels get too low?

 

[Mark63]

I've been using the Protopic for about a year now. If I use it on a new area it allways burns for a day or two, but after that it's fine. Believe me, I've had to use this in some VERY sensitive places!

 

[Iya]

the only Protopic I ahve used is the stuff out of a tube - found out the hard way I can' only use it in small spots - put too big an area (more than a couple square inches) and I was in agony from the burning!

As for being on Remicade - has your doctor considered or talked to you about decreasing the amount of time between infusions? If you are getting 3-4 good weeks, if you drop down to 6 or even 7 weeks apart maybe you will have more good than bad? And not let the remicade levels get too low?

Yes, we went down to 6 weeks, and increased my dose to 10 mg/kg! Thanks for the thought

 

[soiledshorts]

Have you had a chance to look at AloeElite Digestive Pills? I started taking some of these after a friend told me about them to help with my ulcerative colitis symptoms. I read from testimonials that it works well for those suffering with other digestive disorders, including Chrohns.

I'd definitely check them out, aloeelite.com. If you call them up, they're really helpful. They can definitely point you in the right direction since they talk to a lot of people suffering with similar problems.

 

[e13 boy]

Have you had a chance to look at AloeElite Digestive Pills? I started taking some of these after a friend told me about them to help with my ulcerative colitis symptoms. I read from testimonials that it works well for those suffering with other digestive disorders, including Chrohns.

I'd definitely check them out, aloeelite.com. If you call them up, they're really helpful. They can definitely point you in the right direction since they talk to a lot of people suffering with similar problems.

So, i'm not now the only forum member posting about AMP.
I can understand sceptics.Nobody could have been more sceptical than i was before i tried it as no Dr or Crohn's nurse had ever told me about it.
That was the best decision i ever made.It changed my life.

 

[soiledshorts]

So, i'm not now the only forum member posting about AMP.
I can understand sceptics.Nobody could have been more sceptical than i was before i tried it as no Dr or Crohn's nurse had ever told me about it.
That was the best decision i ever made.It changed my life.

Great to hear of another AMP user, keep spreading the word!