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Finally got in with GI

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Ulcerative Colitis
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Posted 6/27/2021 12:42 AM (GMT 0)
Hi everyone!

I had my GI appointment on Thursday....I actually saw a nurse practitioner because I couldn't get into see my actual GI until July 19th and I was feeling pretty crappy. The NP talked to me and decided to do a couple of tests, a blood panel which came out fine, and also a fecal sample which I just sent in yesterday so I won't know the results of that for a few days.

Anyhow, I told him that this flare started after taking Augmentin and Flagyl together for 10 days for my oral surgery. I also asked if my dental implants could be keeping my flare going and he replied with a quick "NO" so that was a huge relief to me. He wants to see if I have C-Diff from taking those antibiotics but I don't think that's it because I don't have watery liquipoopie, I have formed poopies just blood and mucous comes out with it.

Sooo He said he wants me to do prednisone, starting me at 40 mg for 5 days, then 30mg for 5 days, 20mg for 5 days then 10mg for 5 days then stopping it. I'm thinking that's a little harsh of a taper, what do you all think?

I'm just thinking that's going to be a hard prednisone taper over 20 days... What do you all think?
Posted 6/27/2021 5:32 AM (GMT 0)
Did your blood tests include ESR & CRP? I don't think the NP should be putting you on Prednisone before your stool test results come in. Besides, a start at 40 mg. daily is severe flare dosing. Good that you checked in with doctor, but he should see you before July 19 in case you need flex-sig or c-scope appointment to determine accurate DX. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 6/27/2021 1:42 PM (GMT 0)
I agree with old hat about waiting for the results but depending on your symptoms. If you're in desperate need, I'd probably take the pred. If you can wait, great! I also agree with you about the taper schedule. In the perfect world, those quick tapers work, but I've almost never seen it happen here. If you go on pred, unless your symptoms are very mild, and that quick taper works, you're probably stuck on it for a few months at least. That's my experience, I've was stuck taking it for over a year.
Posted 6/27/2021 5:15 PM (GMT 0)
Is mesalamine something you cant take anymore?

q
Posted 6/30/2021 3:00 PM (GMT 0)
Hey Guys,

I got my test results back today... No infections of any kind, bacterial or viral or parasitic, but my inflammation is pretty severe. my results said this:

Calprotectin, Stool

Result: 1889.6 mg/kg

Referance Range:

Normal: 50 mg/kg
Borderline: 50-120 mg/kg
Abnormal: 120+ mg/kg

So my inflammation is pretty high. Starting Prednisone and Asacol tomorrow.. UGH!!!!!! I am SOOOOO Dreading the prednisone!!!!!
Posted 6/30/2021 3:39 PM (GMT 0)
I always preferred faster tapers like what your doctor prescribed.
Posted 7/1/2021 4:46 AM (GMT 0)
Did your past history of UC include severe pancolitis? I'm wondering if that is influencing your present doctor to prescribe Prednisone at this point-- because you haven't been scoped for a long while-- right? The calprotectin test started about 10-12 yrs back at U. of Pennsylvania Med School, I think, and was developed as a marker for IBD inflammation intended to be more precise than ESR & CRP lab tests. Not so sure, though, from what I've been reading in forum posts the past few yrs that it is a major boon to evaluating flares. Scoping is still the gold standard for determining what's actually happening in the colon. But it IS good to know that you don't have c-diff or some other infection going on that would require more treatment in addition to the flare. Take good care, Susie-- so sorry that this crept up on you! / Old Hat
Posted 7/1/2021 10:52 AM (GMT 0)
Hey Old Hat,

No, I've never had pancolitis, the most its traveled is into my sigmoid. He did mention left sided colitis but without a scope I agree there's just no way of really knowing. I'm actually surprised he hasn't ordered one yet. Maybe he's waiting for these meds to improve my inflammation? I have a phone appointment with him in two weeks so I will ask then. It's been so long since I've taken Prednisone, I hope it gives me the energy now it did back then, I have a ton of projects I need to get done around here LOL... Today is the day, wish me luck... :o
Posted 7/1/2021 5:38 PM (GMT 0)
I would push for steroid enemas before prednisone. You have choices here.
q
Posted 7/7/2021 2:04 AM (GMT 0)
Hey everyone,

I caved in and started the prednisone on July 1st. Took my 40mg for 5 days and today was day 1 of 30mg. So far it hasn't effected me too negatively but it did stop my flare almost immediately. I had some poopies on day 1 of Pred, Nothing on day 2, and a relatively normal poopie on day 3 with no blood! WOW.... I was poopie-ing out so much pus and mucous Oh Lordy it was so gross.... I have also been sticking to a SUPER strict diet. No Gluten, Dairy or Sugar or Soy or corn of any kind.. I'm trying to eat the most inflammatory diet I can, the only sweet I get is from an occasional few spoon full of unsweetened applesauce or my smoothie I do every morning that has only banana and frozen blueberries, half an avocado with some awesome protein powder that has super clean ingredients. I am feeling ok for the most part but the prednisone has me feeling somewhat spaced out, but it's nothing I can't handle. Insomnia hasn't been an issue with 5mg of Ambien at night. I am just PRAYING that as I taper my flare doesn't rear it's ugly head. If it does..... ????

Also I am taking Mesalamine 4.8 Grams once daily in the morning. So far so good. I still have no health insurance so I have to try and avoid the Biologics because I simply cannot afford them until we get insurance. I got a good discount on the Mesalamine by using Good RX, cost without insurance was around a thousand bucks but got it at Kroger for 180.00 WHEW....
Posted 7/7/2021 2:48 AM (GMT 0)
Thanks for updating us, Susie. Take care to get adequate calcium & vitamin D during Pred; good luck with taper. Then you'll need to determine whether a mesalamine oral will keep you in remission & if so, which one. Since the time when you were so ill & got Remicade, the GI researchers determined that Asacol works best for patients with colon acidity (pH) of 7 or higher. (Apriso is ok for level 6 pH.) Colazal works best for left-sided UC, but insurers kick up a major fuss over payment for it. Its generic is Balsalazide disodium; generally the one made by Roxane Lab gets pushed off on most patients, probably 'cause it's the cheapie of 2-3 choices. *** Glad to hear you're hanging in well so far! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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