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CCinPA

HealingWell Forum
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Member Profile
Display Name
CCinPA
Profile Created
12/30/2014 3:30 AM
Last Seen
Yesterday 4:10 PM
Total Posts
2473

Last 50 Posts

Stelara here I come!

It sounds like the number of BMs is about the same, but great that urgency is gone! That's a good sign. Are you still taking budensoside? You will know if Stelera is working when you can get off of...

Yesterday 4:07 PM

Ulcerative Colitis
Got a Q to HUMIRA users

1) There are some with UC who have had success with Humira, but it seems to be more successful for Crohn's than UC 2) UC is life long and will require some form of ongoing treatment for life Do you...

Yesterday 3:52 PM

Ulcerative Colitis
IBD and Kidney Stones

A few years ago my PCP sent an email to all patients saying they would require urine analysis at each appt for all patients on long term pain or certain other meds. It didn't apply to short term meds...

Yesterday 4:06 AM

Ulcerative Colitis
argghhh

Thanks, Clo. Doing ok. My guess is that if inflectra doesn't work as well as remi it will be a few months to know. The infusion nurses said they have a lot of people on inflectra who are doing well...

2/5/2023 8:49 AM

Ulcerative Colitis
Treatment when newly diagnosed

Make a list of questions to ask your doc and take it with you when you see him and don't be afraid to ask. If gives you a hard time or you still feel uncomfortable, find another doc. This is a...

2/3/2023 9:36 AM

Ulcerative Colitis
Lab Test

What is the normal range for that? Some of my results sometimes come back slightly high or low but docs tell me as long as they are close to the normal range nothing to worry about....

2/3/2023 9:16 AM

Ulcerative Colitis
Stelara and Predsol enemas (prednisolone enemas)

Don't know what predsol is but I assume it's some sort of steroid. I used hydrocortisone enemas with humira and when I first started remicade. Didn't have any issues....

2/2/2023 4:15 PM

Ulcerative Colitis
Xeljanz Update and Side Effects

Hopefully they were able to remove the skin cancer. My new GI recommends that I get annual skin checks. Old one never mentioned it....

2/2/2023 4:05 PM

Ulcerative Colitis
Is everyone being forced off of Remicade?

I suspect that most new patients in the U.S. are now started on biosimilars if available rather than the name brands. I know for Remicade there are a lot of biosimilars to choose from. Don't know if...

2/2/2023 3:57 PM

Ulcerative Colitis
argghhh

Susie -- The last time I had remi that was provided by the infusion center BCBS paid about $2000/vial. UHC paid Accredo about $800/vial for inflectra. Surprising that remi cost more in 2004 than now...

2/2/2023 3:41 PM

Ulcerative Colitis
Is everyone being forced off of Remicade?

I was very surprised to see how much the difference in price was. If I was an insurance bureaucrat I would force the same change. Since I'm the patient it sucks. Remicade is going to have to lower...

1/31/2023 5:29 AM

Ulcerative Colitis
Kathy1946

Have you heard anything about getting the stool tests? Docs should do the biopsies when you get scoped without you asking, but if you ask and they don't do it you really should find a new doc....

1/31/2023 5:21 AM

Ulcerative Colitis
argghhh

I saw the claim that Accredo sent to insurance for Inflectra. No wonder they insisted that I switch. It was less than half the price (almost 1/3) the price BCBS paid for Remicade.. Crazy! Now I am in...

1/31/2023 5:14 AM

Ulcerative Colitis
UC or Crohns?

Does Stelara affect iron levels? I am not understanding the delay. I had iron transfusions while on Entyvio, Humira and when I first started remicade, A bad flare can for sure cause low iron level so...

1/31/2023 4:58 AM

Ulcerative Colitis
Is everyone being forced off of Remicade?

Inflectra is less than half the price of Remicade (actually almost 1/3 the price of Remi). I don't like being forced to change something that has me in remission after it took me so long to get here,...

1/31/2023 4:51 AM

Ulcerative Colitis
It's my 14-year anniversary with UC

I just realized that this month is my 10 year anniversary with UC. What a long road with twists & turns, ups and downs. Hopefully I will stay in remission land for the next 10!...

1/28/2023 5:50 AM

Ulcerative Colitis
Salofalk enemas and switching to Pentasa granules

When you insert the nozzle point towards your naval for the proper angle. When I had problems squeezing the bottle instead of squeezing from behind I will reach between my legs from the front to get...

1/28/2023 1:35 PM

Ulcerative Colitis
Kathy1946

The constipation is likely due to the colon & rectum being inflamed and swollen. Did you ask your doc about stool tests? You don't have to wait for a GI to order them -- your primary care physician...

1/28/2023 5:26 AM

Ulcerative Colitis
Kathy1946

When you had the flare 11 years ago and the ER said you have UC, did you have a colonoscopy? As far as I am know that's the only way to be properly diagnosed. Did you do anything for that 1st flare...

1/27/2023 9:59 AM

Ulcerative Colitis
Destroying the system ❤️

If you find a group let us know! I would definitely be interested in an organization like that....

1/27/2023 4:19 AM

Ulcerative Colitis
argghhh

Clo -- if your doc is sick isn't there someone else covering his patients? I hope they get it straightened out for you soon. Is it even legal for a pharmacy to change meds without notifying anyone?...

1/27/2023 4:17 AM

Ulcerative Colitis
Do you take Nonsteroidal anti-inflammatory drug like Motrin or Advil

Can you use rectal meds? They might help keep the flare from getting too bad until you can decide on the way forward....

1/26/2023 4:15 PM

Ulcerative Colitis
Do you take Nonsteroidal anti-inflammatory drug like Motrin or Advil

I avoid advil, aleve etc., but when I have really bad pain from my knees or a pinched nerve I take tylenol and regular coated aspirin at the same time. That would probably make a doctor's head spin,...

1/26/2023 4:05 PM

Ulcerative Colitis
argghhh

I almost wish it was just me that has insurance woes. So sorry you all have to deal with this too. Those companies have too many "rules" that they apply to everyone, not recognizing the need for...

1/26/2023 3:45 PM

Ulcerative Colitis
argghhh

I called the infusion center today to make sure they got the new orders for Inflectra. Glad I did because the doc's office never sent the new orders to them! That would have been a real mess when I...

1/25/2023 2:21 PM

Ulcerative Colitis
argghhh

Flowers -- I totally missed your last reply! I need to run all the numbers for medicare before I decide anything. Everyone I know who is on it loves it. Before my company switched our insurance I was...

1/24/2023 3:37 PM

Ulcerative Colitis
argghhh

Accredo is shipping today for delivery tomorrow so I am very hopeful it will get there before the cut off (infusion center has a cut off of 2 PM) so I can get my infusion on time on Thursday. Fingers...

1/24/2023 3:20 PM

Ulcerative Colitis
Appendix

I remember reading somewhere that if you had your appendix removed you were less likely to get IBD, but I don't remember anything about it helping if you already have have IBD. I had to have mine...

1/24/2023 3:13 PM

Ulcerative Colitis
argghhh

So Accredo (specialty pharmacy) got the script on Friday 1/20. I called this morning (1/23) and gave them my co pay assistance card number and checked on the status of the order and was told it could...

1/23/2023 2:32 PM

Ulcerative Colitis
Inflectra co pay assitance?

I called the number above and the person gave me this website: https://www.pfizercopay.com I did everything online. It got a little confusing when I entered the insurance info so hopefully I did it...

1/23/2023 2:13 PM

Ulcerative Colitis
Stelara here I come!

So it sounds like you are going 5x within 24 hours, correct? That might be a little better than before. See where you are in a week. Day to day can vary a lot. Best way to see if things are improving...

1/23/2023 10:08 PM

Ulcerative Colitis
Inflectra co pay assitance?

Most likely my med will be ready to ship soon. I am hoping to have my infusion by the end of the week. I have to get on this first thing on Monday. The way it's sounding I will have to pay for the...

1/21/2023 6:47 AM

Ulcerative Colitis
Inflectra co pay assitance?

How did you sign up for it, Rusty?...

1/21/2023 6:42 AM

Ulcerative Colitis
Inflectra co pay assitance?

So something made me just go back and I missed a separate message from the doc's nurse about the co pay assistance. She said she was afraid if she did it online that it would cause problems with the...

1/21/2023 4:55 AM

Ulcerative Colitis
argghhh

Flowers -- as long as I am working my work insurance takes priority over medicare. Since my company is so big I don't even know if I could opt out of work insurance and just go with medicare and...

1/21/2023 4:45 AM

Ulcerative Colitis
How IBD can impact you during stressful situations-, another funny farm story

Your police have an Andy Griffith/Mayberry style ... Texas sized Mayberry lol That's cool that you are working with those kids. The bad ones may be a problem until the parents are befriended so they...

1/20/2023 3:43 PM

Ulcerative Colitis
A Plant-Based Option to Treat Ulcerative Colitis

This says the study was 10 patients, and 3 reached remission. If that would hold for wide scale use it's about the same success rate as most drugs so might be worth a try if you have mild disease....

1/20/2023 3:16 PM

Ulcerative Colitis
argghhh

Old Hat -- is this the link you were talking about? https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate/advocacy-priorities Well, my saga continues. Doc's office said that UHC...

1/20/2023 3:04 PM

Ulcerative Colitis
How IBD can impact you during stressful situations-, another funny farm story

This was more scary than funny to me. Someone sneaking around your house late at night cutting your window screens? That is criminal, not a prank. Still glad you found some laughs. Curious -- how was...

1/20/2023 4:20 AM

Ulcerative Colitis
Update Jan 27 --- Scope Prep During a Flare

Most of my scopes were while I was flaring too. Only 2 were when I was in remission and I have had a lot of scopes. My old doc said to me "you had a lot of scopes" as if I had asked for them! Flippin...

1/20/2023 4:08 AM

Ulcerative Colitis
Not sure what to expect

I too am confused about the Remicade dosing. Seems like there was a big gap between the 1st and 2nd infusion. What is dosage are you going to get on the 30th? Is your doc checking for antibodies with...

1/19/2023 4:52 PM

Ulcerative Colitis
Update Jan 27 --- Scope Prep During a Flare

I had a PA one time who didn't understand why I kept putting off a scope. I asked her if she ever did one and she said no. I said she needed to at least follow the prep instructions and then she...

1/19/2023 4:31 PM

Ulcerative Colitis
UC -> Since 2006 -> Confused -> Need Suggestions

Everyone loses weight overnight ... even before a bowel movement. I suggest checking your weight at the same time every day for a few days and see what that looks like, Try adding some calorie dense...

1/19/2023 4:22 PM

Ulcerative Colitis
argghhh

When I had iron infusions the place I went to didn't have IV pumps either. That infusion was 3 hours I think, but I think those infusions have to be done really slowly anyway. That was an oncology...

1/19/2023 4:12 PM

Ulcerative Colitis
Infusion delayed, anxious and worried

So glad you were able to get in tomorrow! I'm sure that was a big relief! I know what you mean about getting stressed over this stuff. I have to keep taking deep breaths and telling myself it will...

1/19/2023 4:00 PM

Ulcerative Colitis
Inflectra co pay assitance?

Thanks, Susie! I asked my doc about it and they said they would fill everything out for me. With Remicade I just filled everything out myself online. There wasn't any part that the doctor had to fill...

1/19/2023 3:55 PM

Ulcerative Colitis
Inflectra co pay assitance?

How do you sign up for it? On the website I found a form that I would have to fill out and take to my doc for him to fill out and send in. Isn't there a way to do it online? I know there are several...

1/19/2023 12:21 PM

Ulcerative Colitis
argghhh

Just heard from my doc (he called me himself!) and he said he had a lengthy call with UHC. They agreed to a 6 month authorization to stay at my current infusion center (hopefully they will renew it...

1/19/2023 12:16 PM

Ulcerative Colitis
Stelara here I come!

Glad you only had to go to that place 1 time since they made you pay $180! Hope this is the ticket for you. You will not know how to act when you don't have to get up 2x/night to poo :) Celebration...

1/18/2023 3:52 PM

Ulcerative Colitis
argghhh

They are still working on approving Remi, but my doc's office called today and said UHC is requiring that I use a stand alone infusion center. The place I would have to go is a nightmare to deal...

1/18/2023 3:43 PM

Ulcerative Colitis
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