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11-11-2015, 11:15 AM   #1
LJS
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Join Date: Feb 2013
Location: Aurora, Colorado

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Scared

As I posted earlier, i'm in the midst of a horrible flare, brought on i'm sure by the stress associated with losing both my parents. Nothing, and I mean nothing, is stopping it. I was originally put on 40 mg pred daily, to taper down by 10 mg per day, as bleeding eased, and apriso. I used to be on lialda but insurance won't cover it.

apriso didn't work, was put on balsalazide in september. did really well, for the first 4-5 weeks, until pred dropped from 20 - 10 mg.. then all symptoms came back and cannot get it controlled.

bleeding is terrible. I'm up to 40 mg/day again and switched (myself) to lialda to see if that would work. 10 days now and now improvement. In the meantime, I have horribble insurance AND the gastro won't be available until january, so all I can do is see the nurse, who i'm scheduled to see tomorrow. I am waitlisted at another practice and I think I'll get in there sooner..

my fatigue is insane, and I had blood work run yesterday. results not good:
WBC 20.3k
RBC 3.2 mil//uL
hemoglobin 8.1
hematocrit 25.9%
platelet count 680 1000/uL

those are the worst of it, showing intense anemia. any thoughts? I have not heard back from the doctor's office although the results were posted online last night. Do I need hospitalization? Transfusion? Oh, I do need potassium chloride..

also, my glucose is high??? why would that be, anyone know? 121

I'm scared! I'm a single mom and I am all alone here..
11-11-2015, 01:01 PM   #2
Clash
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Location: Georgia

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Have they checked your ferritin levels? I notice your HGB was low. Have they offered iron pills before now or is this the first time it was low? Have they mentioned an iron infusion?

Do you have CD or UC? The thing about the meds you've mentioned, 5ASAs is that they work well for UC since they only treat the top layer of intestine and that is all UC affects. They aren't as effective with CD since it is transmural, through all layers. A Cochrane study has shown 5ASAs are only as effective as placebos. That doesn't mean that some people with mild disease don't get relief from them but the majority with CD need bigger guns in meds.

I would put a call in to the GI that posted that lab work and question them as to what you need to do next. Tell them you're concerned about your lab results and need to know if you need iron transfusion or what the next step is.

So sorry you are having such issues hope everything improves.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-11-2015, 02:45 PM   #3
fuzzy butterfly
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Hi sorry to hear your story..I agree with clash, ring n see what you need to do/take to help sort things out.
Best wishes 💕
11-11-2015, 06:27 PM   #4
ronroush7
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Location: vienna, Virginia

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Have they checked your ferritin levels? I notice your HGB was low. Have they offered iron pills before now or is this the first time it was low? Have they mentioned an iron infusion?

Do you have CD or UC? The thing about the meds you've mentioned, 5ASAs is that they work well for UC since they only treat the top layer of intestine and that is all UC affects. They aren't as effective with CD since it is transmural, through all layers. A Cochrane study has shown 5ASAs are only as effective as placebos. That doesn't mean that some people with mild disease don't get relief from them but the majority with CD need bigger guns in meds.

I would put a call in to the GI that posted that lab work and question them as to what you need to do next. Tell them you're concerned about your lab results and need to know if you need iron transfusion or what the next step is.

So sorry you are having such issues hope everything improves.
I am so sorry.

2
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-17-2015, 12:37 PM   #5
LJS
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Location: Aurora, Colorado

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Update: I've been in the hospital since Thursday. Clash, I have UC (I thought this particular forum was the UC one??).

Hemoglobin and hematocrit were critically low - hg was down to 6. Had 2 transfusions and I've been holding steady at 9-9.7 for the last 4 days.

CRP levels: 80
ESR level: 78

now, CRP is down to 28 and Esr is at 60..neither good but heading in the right direction. I'm on IV steroids, had a scope yesterday but he wasn't able to get very far due to the extent of the inflammation. Plan is another day or two on iv steroid, switch to oral steroid, release me and get me on remicade. they are working that out (hopefully) with insurance.
11-17-2015, 01:06 PM   #6
ronroush7
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I am hoping the best for you.

11-17-2015, 01:13 PM   #7
ronroush7
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Update: I've been in the hospital since Thursday. Clash, I have UC (I thought this particular forum was the UC one??).

Hemoglobin and hematocrit were critically low - hg was down to 6. Had 2 transfusions and I've been holding steady at 9-9.7 for the last 4 days.

CRP levels: 80
ESR level: 78

now, CRP is down to 28 and Esr is at 60..neither good but heading in the right direction. I'm on IV steroids, had a scope yesterday but he wasn't able to get very far due to the extent of the inflammation. Plan is another day or two on iv steroid, switch to oral steroid, release me and get me on remicade. they are working that out (hopefully) with insurance.
You were right . it is the UC one.

11-18-2015, 10:17 AM   #8
my little penguin
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Join Date: Apr 2012

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Glad they admitted you and are now trying to get remicade on board
Remicade can take all three infusions to fully work
Check out remistart to cover your portion of the copay
http://www.remistart.com
__________________
DS - -Crohn's -Stelara -mtx-IVIG
12-18-2015, 11:46 PM   #9
Lady Organic
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Are you doing better LJS? let us know of your experience with remicade!
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-01-2016, 08:14 PM   #10
dontmesswithmrwest
 
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Join Date: Nov 2014
Location: Athens, Georgia
As I posted earlier, i'm in the midst of a horrible flare, brought on i'm sure by the stress associated with losing both my parents. Nothing, and I mean nothing, is stopping it. I was originally put on 40 mg pred daily, to taper down by 10 mg per day, as bleeding eased, and apriso. I used to be on lialda but insurance won't cover it.

apriso didn't work, was put on balsalazide in september. did really well, for the first 4-5 weeks, until pred dropped from 20 - 10 mg.. then all symptoms came back and cannot get it controlled.

bleeding is terrible. I'm up to 40 mg/day again and switched (myself) to lialda to see if that would work. 10 days now and now improvement. In the meantime, I have horribble insurance AND the gastro won't be available until january, so all I can do is see the nurse, who i'm scheduled to see tomorrow. I am waitlisted at another practice and I think I'll get in there sooner..

my fatigue is insane, and I had blood work run yesterday. results not good:
WBC 20.3k
RBC 3.2 mil//uL
hemoglobin 8.1
hematocrit 25.9%
platelet count 680 1000/uL

those are the worst of it, showing intense anemia. any thoughts? I have not heard back from the doctor's office although the results were posted online last night. Do I need hospitalization? Transfusion? Oh, I do need potassium chloride..

also, my glucose is high??? why would that be, anyone know? 121

I'm scared! I'm a single mom and I am all alone here..
Praying for you.

I wish you the best with remicade. If you need support and/or have questions about Remicade or surgery (as tough as it is, sounds like you are a severe case and something you should consider) message me
__________________
"If youíre a Kanye West fan, youíre not a fan of me, youíre a fan of yourself. You will believe in yourself. Iím just the espresso. Iím just a shot in the morning to get you going, to make you believe you can overcome the situation that youíre dealing with all the time."
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