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Finally got the results, Not Good...

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Ulcerative Colitis
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Posted 6/4/2009 7:29 PM (GMT 0)
Hey guys!

I finally got the blood test results I have been waiting for. I guess it takes quite a while for that Prometheus lab to do the inifiximab antibody and level tests and then get them back to Cleveland.

I was expecting a phone call from the doctor, but instead got a letter in the mail that was typed to my Primary Care doctor and CC'd to me. That part in itself was surprising to me. Is that how a speciality clinic works? They work you up as a "consult" and then expect someone else to take care of you from there?

Anyway, I haven't developed any antibodies to the Remicade. But the bad news is my blood levels after 4 weeks were 4.8. According to the letter "normal is less than 1.4" So I have plenty of the drug still on board but I still started this awful flare. "It is unlikely that further infliximab will help her. At this point, I would recommend it be stopped." is what the letter says.

I have actually been feeling good UC wise this past week. I have had only 2 or 3 soft BMs in the morning (Usually I am awakened around 4 or 5 am) and none through the day.

My big trouble is the Prednisone side effects. My head has been so foggy, I have that awful sticky mouth, I'm having trouble sleeping (took my Ambien a couple of times!), STARVING (but not wanting to eat and screw up the good colon feeling) etc etc. I can't stay on it forever.

I called the specialist's office (he is out until Monday) and made an apt for next Wednesday. I am going out of town the following week for a conference for work and I just want to get things straightened out!

I have a list of questions that I am going to ask and I wanted to run it by you guys and see what you think:

1. When can I taper off of this Prednisone? (I've been on 30 mg in the am and 10 in the pm since 5/20)
2. Should I be taking more Asacol (right now 3 pills 3 x per day)
3. Or should I have another 5-ASA so I don't have to take so darned many pills? (Lialda?)
4. If no Remicade, why not Humira?
5. In his letter, he mentions 6-MP. When might I start that?
6. Should I try probiotics like VLS#3 DS (the prescrption strength)
7. Should I try the Specific Carbohydrate diet or some other particular diet?
8. What next? Just from the tone of the letter, it just sounds like it might be hopeless for me...do I schedule to see a surgeon when I am actually feeling halfway decent right now? Do I want until I try to taper off these 'roids and "flare" badly again. I am just so stressed about this whole thing!

Thanks everyone for your advice and letting me post here. I'll say it again, I'm so glad that I found this forum!

By the way Take Steps Cleveland in 2 days, Make some Noise for the CCFA!

Jen
Posted 6/4/2009 7:53 PM (GMT 0)
1. When can I taper off of this Prednisone? (I've been on 30 mg in the am and 10 in the pm since 5/20)
Ummm, I don't know! I'd see what your GI has to say on Wednesday.
2. Should I be taking more Asacol (right now 3 pills 3 x per day)
I do 4 Asacol 3x per day, so 12 total. I don't see why you couldn't be on more.
3. Or should I have another 5-ASA so I don't have to take so darned many pills? (Lialda?)
I am going to switch to Apriso (also a 5-ASA) as soon as my Asacol runs out. I just got it refilled and didn't want to waste it. I'm switching so I can take fewer pills per day. Plus, they have a program (not based on your financial situation) that will reimburse you up to $50/month for your copay. So, since mine is only $35, I won't be paying anything for it!
4. If no Remicade, why not Humira?
I'd definitely ask about Humira!
5. In his letter, he mentions 6-MP. When might I start that?
I dunno....from things I've read, I'd probably rather to Humira before 6MP.
6. Should I try probiotics like VLS#3 DS (the prescrption strength)
Yes, I would.
7. Should I try the Specific Carbohydrate diet or some other particular diet?
It depends on if you think you can do it. Personally, I think I'd hate being on the SCD. And so far I haven't found that food effects my UC.
8. What next? Just from the tone of the letter, it just sounds like it might be hopeless for me...do I schedule to see a surgeon when I am actually feeling halfway decent right now? Do I want until I try to taper off these 'roids and "flare" badly again. I am just so stressed about this whole thing!
Have you ever used rectal meds, if not, get some!! I don't think you need to consider surgery yet. It sounds like you have a lot of meds to try yet.
Posted 6/4/2009 8:13 PM (GMT 0)
Oh gosh, I am the opposite. I would take 6MP before resorting to humira or remicade and thankful I never had to make that choice.

If you are on remicade now and still taking prednisone and remicade is not kicking you in remission than I would consider you to be prednisone dependent. So, if I were you I would be having a serious discussion about prednisone dependency. I can't imagine anything worse than taking prednisone AND being on remicade, but that's just my opinion.

You might not be ready or need to throw in the towel and have surgery just yet BUT the best time to have surgery is when you are feeling well and not too sick.

Sue
Posted 6/4/2009 8:27 PM (GMT 0)
Fruitgirl,

How do you find out about that program that reimburses you? I pay $50.00 for 20 days of 9 pills a day of asacol. I was thinking that that will get expensive. Can you do the program even if you have insurance? Are you in the US?

Jen
Posted 6/4/2009 9:01 PM (GMT 0)
http://www.apriso-uc.com/information/index.aspx

I just filled out the form (it pops up when you click "sign up") and printed out the "card" (it fills up most of the sheet of paper) with all the info on it.

I found it when I was looking at the website. I'm in the US and I have insurance. I called both the drug company (Salix) and my insurance company and both said there was no reason I shouldn't get $35 each month. I can't use the mail order option...for some reason, they won't bill the drug company for me.

The reason I said I'd rather do Humira is because some newer studies suggest it's better to be more aggressive (use biologics earlier) with difficult cases of UC. My GI said that if the mesalamines quit working, he'd recommend trying Remicade next.
Posted 6/4/2009 9:06 PM (GMT 0)
Just printed out the "card!" Hey, if it can save $600 or whatever, that's more in my pocket! That's a great reference! Thanks!
Posted 6/4/2009 9:33 PM (GMT 0)
You're welcome! I'll save $420 over the year if I do get my full $35 copay back each month! I'm lucky to be in a situation where I can afford $35 a month, but I'm certainly not going to say "no thanks" to that much money!
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