Need some opinions

[tishbite]

need some opinions

I am loosing weight again and my pain is getting worst. The tramadol is kind of helping but I have all this joint pain that isn't being helped by it all. I am still taking 25 mg shots of methotrexate once a week with folic acid but it's just not cutting it. My options right now are start a study on a new drug that only a couple thousand people have tried (so far there has been no "serious" side effects" but it is not yet approved by the fda). My other option is to take Tysabri which I am super weary about. Has anyone taken tysabri? Did it help any? I know everyone is different I am just so afraid of the brain problems leading to death side effect :/ I have to do something though because my crohn's is becoming unbearable.

 

[braveheart]

There are many treatments available for this disease.

Have you tried predinsone? You can ask your doc about it.
It is not the best drug for the long term, but it could give you some releaf.

 

[tishbite]

I have actually tried prednisone. I had a bad reaction with vomiting and fever and shaking etc. I had to go off it and it is now listed as one of the things I am allergic to along with Imuran. I have become imune to Remicade after taking it for 3 years+. I'm kind of stuck.

 

[braveheart]

I knew predinsone has many side effects such as:

-Increased appetite
-Weight gain
-osteoporosis (in the long run)
-Insomnia
-Anxiety
-Acne
-Dependency

But I din't know it included vomiting and fever and shaking. Are you sure they were because predinsone?

I am not going to recomend this but in some cases when drug treatment is not enought doctors can consider a surgery.

 

[KWalker]

Have you thought of trying to raise the dose of Methotrexate? Are you doing injections or pills? If you're doing the injections, where are you doing them?

I did both pills, and injections. Felt the injections did more than the pills, and I did them myself in the top of the leg. Its supposed to be a very effective area(maybe due to muscle, I'm not sure). I'm not sure how much I took off hand, but it either went to the 6 or the 8 on the syringe.

 

[Jennifer]

Have you tried Asacol, Azasan, Azulfidine, Cimzia, Entocort, Humira, Purinethol, or Sulfazine or a combination of any of the above? A lot of people react badly to Prednisone but Entocort has less side effects and less severe ones at that. If you've tried all options medication wise (aside from the mysterious one and one I've never heard of which you're afraid to take) then is a resection an option for you as mentioned above? That's why I had my resection in the past because all medications failed to get my flare under control. Been in remission ever since.

 

[tishbite]

I'm pretty positive it the vomiting etc was because of the prednisone. Each time I took it I become terribly ill. I guess my body just denied it completely.
I take my injections in the top of the leg. It's easy and painless to do it there. Raising my methotrexate is always an option to consider with my doc, definitely.
Out of that list of medications I have no tried any. My doc told me Humira would not be a good bet for me just because I have become immune to Remicade and the likelyhood of Humira doing anything beneficial is slim to none.
I have been considering surgery every now and then when things get worst and nothing seems to work. My uncle who was diagnosed with crohn's when he was 9 got the surgery when he was in his late teens early twenties i believe and he had been in remission for 20 years. I'd like to be in his shoes.

 

[Jennifer]

I hope I hit 20 years (and that we all do)! I'm the same as your uncle where I was diagnosed when I was 9 and had my resection when I was 17 12 years ago. Resections don't always put people in long term remissions but if its needed then we can all hope for the best. Was your uncle also taking maintenance meds after his surgery?

 

[archie]

I had surgery as meds weren't 'fixing' my damaged bowel and it definitely was a positive outcome as I'm in remission. I too would be dubious about starting a drug that wasn't approved yet especially as your already allergic to some. Raising the meth might help. Hope u figure it out soon