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CCinPA

HealingWell Forum
>
Member Profile
Display Name
CCinPA
Profile Created
12/30/2014 3:30 AM
Last Seen
6/2/2023 6:50 PM
Total Posts
2626

Last 50 Posts

Annoyed with my IBD team

So sorry to hear what you have been through. A 2 week hospital stay is pretty rough! Glad you are feeling better....

6/2/2023 6:49 PM

Ulcerative Colitis
Weighing my option of being hospitalized.

Sounds like you are heading in the right direction. Half the number of trips is a huge improvement. I'd slow down the taper if it was me ... maybe 5 mg every 5 days. Do you use rectal meds? They can...

6/2/2023 6:46 PM

Ulcerative Colitis
Problems getting insurance to pay for Humira

Geesh! What is with these docs who don't notify patients that they are leaving? I had previous docs who sent letters when they were leaving or retiring in the past. I don't like this new trend. Maybe...

6/2/2023 2:04 AM

Ulcerative Colitis
Advice for prednisone please

I don't think any OTC Tylenol contains codeine. That would be a prescription strength that I think is called Tylenol 3. I use arthritis strength Tylenol that is OTC and it doesn't have codeine in it....

6/2/2023 1:59 AM

Ulcerative Colitis
Advice for prednisone please

Tapering 5 mg/wk is normal. Starting at 20 mg is unusual. Whenever I had to take pred for a flare I always was started at 40 mg/day tapering for 6-8 weeks. You are on a low dose but normal taper....

6/1/2023 4:42 PM

Ulcerative Colitis
Worried about Rinvoq :(

Here's the link to the thread that Straydog mentioned -- a lot of posts in that thread. Might be a helpful read: https://www.healingwell.com/community/default.aspx?f=38&m=4303983 ...

6/1/2023 8:35 AM

Ulcerative Colitis
C-scope insurance coverage (USA)

I can't wait for the tricorder to be developed! And a transporter lol Some things from Star Trek we use all the time -- flip phones remind me of communicators, kindles remind me of the pads they had...

5/31/2023 2:53 PM

Ulcerative Colitis
How is everyone doing? I feel cured at this point with Rinvoq

Glad you are doing well on Rinvoq. Just a word of caution -- don't think this is a "cure". You have to keep taking it to feel this well. It's a treatment that works. If you stop you will be sick...

5/31/2023 2:30 AM

Ulcerative Colitis
Can you have insurance approvals for more than one infusion center?

That's good to hear, Haley. Now that you know better, if you get that other nurse again tell her you want the pump....

5/31/2023 2:28 AM

Ulcerative Colitis
C-scope insurance coverage (USA)

I saw that article. I already thought docs had to get a PA for scopes. Years ago BCBS (at least in PA) tried to implement no sedation for all scopes and the gastroenterologists got them to rescind...

5/31/2023 2:22 AM

Ulcerative Colitis
Problems getting insurance to pay for Humira

Simon -- didn't mean to hijack your post. Did you get everything worked out with humira co pay assist?...

5/30/2023 11:45 AM

Ulcerative Colitis
Problems getting insurance to pay for Humira

Heard back from my doc today. He's leaving the medical group at the end of June and is booked. He recommended 2 other docs. They are also booked. I got a message from the nurse who does the PA's who...

5/30/2023 11:29 AM

Ulcerative Colitis
I miss popcorn

When I am flaring I avoid popcorn, but in remission I eat it without issue. I love popcorn. When I started eating it again, I bought hull-less popcorn. But apparently "hull-less" does not mean "no...

5/30/2023 2:00 AM

Ulcerative Colitis
FRUSTRATED !!!

It's been a while since I had IV steroids but I think I was hooked up constantly to a saline drip, and given a bag of the steroids twice a day. I was also on a a soft diet while hospitalized....

5/28/2023 4:01 AM

Ulcerative Colitis
FRUSTRATED !!!

I just read back over this. Did they do blood work to check for antibodies to Humira? A stool test doesn't check for that. Stool tests are to check for inflammation or pathogens like c-diff and...

5/28/2023 3:57 AM

Ulcerative Colitis
FRUSTRATED !!!

It can take renflexis a liitle while to work, but it's concerning that pred doesn't seem to be doing anything for you. Contact your doc. It's not good that you have seen no improvement since you have...

5/27/2023 4:41 PM

Ulcerative Colitis
Anyone take methotrexate with remicade

Hope the methotrexate helps....

5/26/2023 1:20 PM

Ulcerative Colitis
Anyone take methotrexate with remicade

Have you had any scans or x-rays of your joints?...

5/26/2023 2:10 AM

Ulcerative Colitis
Still on Remicade

I've seen other people here in the past who had to stop using remicade because of joint pain. Maybe one of them will see your post and offer some advise. You've gone through a lot of meds. Any idea...

5/22/2023 2:32 PM

Ulcerative Colitis
Where is everyone?

Geezer -- happy to hear the R word :) May it continue for a long long time! Hopefully the iron pills will work quickly. If you start having gastro issues, let your doc know right away and hopefully...

5/22/2023 2:22 PM

Ulcerative Colitis
Stelara. Shorter than 8 week intervals?

I don't know anything about Stelera, but if you only had 2 shots so far it's still early. You are kind all over the place with your frequency. In the 1st post you said 4 or 5 and in the last you said...

5/20/2023 1:25 PM

Ulcerative Colitis
Renflexis infusions

Try adding metamucil or benefiber to help bulk the stools. My GI said benefiber but many here use metamucil. That should help. Hopefully after the next infusion you can see more improvement -- less D...

5/20/2023 1:11 PM

Ulcerative Colitis
Problems getting insurance to pay for Humira

I am going to send a message to my doc right now and check to see if he needs to see me in person. We've had phone appts but not in person for 2 years and insurance is requiring another PA in July --...

5/20/2023 1:03 PM

Ulcerative Colitis
Where is everyone?

Curl -- glad you are in remission, but I agree with iPoop -- best to take some pills everyday on a regular basis to stay in long term remission, Think of them as colon vitamins instead of meds :) Spo...

5/20/2023 12:53 PM

Ulcerative Colitis
flare in other parts of my colon

I don't understand why the doc told you to stop lialda except that he doesn't think it's doing much for you. Many people do well on max dose of mesalamine long term. It sounds as though you have only...

5/20/2023 12:38 PM

Ulcerative Colitis
Problems getting insurance to pay for Humira

Sara, that's awful! Was he able to get more info today?...

5/18/2023 2:33 PM

Ulcerative Colitis
Renflexis infusions

That's a good sign, Wayne! I was one of those who noticed immediate improvement but it took a long time until I reached full remission. Hope you the improvement continues for you!...

5/18/2023 2:30 PM

Ulcerative Colitis
AIRPLANE TRAVEL: Enemas in CHECKED IN baggage

Henry -- curious how you found a post from 7 years ago to comment on....

5/15/2023 2:44 AM

Ulcerative Colitis
Approved for Rinvoq, but sick at the moment

I recently had a co worker with similar symptoms to yours. Her PCP couldn't figure out what was wrong so randomly checked for a UTI even though she didn't have normal UTI symptoms. Turns out that's...

5/15/2023 2:41 AM

Ulcerative Colitis
Where is everyone?

I have looked at Reddit a couple times and I don't like that I can't see at a glance which posts I want to read. You have to scroll through all of them sorta the way you have to scroll through your...

5/15/2023 2:27 AM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

Wayne - Renflexis is a biosimilar for Remicade. I am on Inflectra which is a different biosimilar for Remicade. I loved Remicade and was switched to Inflectra in January. Everything is ok so far....

5/15/2023 2:09 AM

Ulcerative Colitis
Where is everyone?

Thanks, iPoop! No need to PM her .. she is likely doing well and doesn't feel the need to come here. I am glad to know she is still kicking :)...

5/14/2023 10:03 AM

Ulcerative Colitis
Where is everyone?

ipoop -- when was the last time you saw NCOT on the Reddit site? She hasn't been at HW since Sep 2022 and I know Clo has been worried about her ... well I am getting concerned too. Her last post here...

5/14/2023 4:51 AM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

What questions do you have about Inflectra, Sassy?...

5/14/2023 4:44 AM

Ulcerative Colitis
Where is everyone?

I guess Redit must be slow today. Sorry that people there won't hear about the benefits of rectal meds because they really can help a lot. I suspect you are bored and came here to stir up turmoil....

5/13/2023 5:43 AM

Ulcerative Colitis
Where is everyone?

I like HW ... even when it's quiet. Glad you found a forum you like, Damo....

5/13/2023 4:39 AM

Ulcerative Colitis
Problems getting insurance to pay for Humira

I think most of these co pay assistance have a max assistance each year of around $20,000. That's usually enough to cover the max out of pocket for most people and then after that insurance should...

5/13/2023 4:29 AM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

I don't get blood tests before my infusions....

5/13/2023 3:42 AM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

Remicade infusions take about 2 hours, but there's also about an hour before the infusion starts for them to mix the med. Some places make you stay for a little while after to make sure you don't...

5/12/2023 8:39 AM

Ulcerative Colitis
Problems getting insurance to pay for Humira

You can't use your HSA for the amount that co pay assistance covers, but you should be able to use it for the $5 co pay you have to pay yourself. Also, check with the pharmacy you are getting the...

5/12/2023 8:34 AM

Ulcerative Colitis
Problems getting insurance to pay for Humira

If you have reached your max out of pocket you shouldn't have to pay anything for the rest of the year. Why do you think your insurance won't pay anymore? Could you explain a little more. The...

5/11/2023 2:24 PM

Ulcerative Colitis
Has anyone taken infusions for UC relief?

It sounds like those are loading doses for a biologic medication. What med are they giving you? After the loading doses there will be ongoing infusions on a regular basis. It won't just be those 3...

5/11/2023 9:06 AM

Ulcerative Colitis
FDA Approves First Oral C.Diff Pill Made from Human Poo

Good to know!...

5/10/2023 4:11 PM

Ulcerative Colitis
Where is everyone?

What is the normal range for those tests, Clo? For example, upper limit for CRP on my tests is 10, so I don't worry when it's a little over that since I have arthritis in my knees. I've never had a...

5/10/2023 4:10 PM

Ulcerative Colitis
Still on Remicade

I think that's an older UC med that can also help joint pain. So sorry you are dealing with this. It sucks that you found something that is working for your UC but now you have this bad side effect...

5/10/2023 3:57 PM

Ulcerative Colitis
Been a long time since I was on here!

Good to hear you are doing so much better!!...

5/10/2023 3:44 PM

Ulcerative Colitis
Where is everyone?

Wayne -- sorry to hear you are still struggling. A couple weeks ago it sounded like pred was helping and you were going to get a test to check on the Humira levels. Did you get those results back?...

5/8/2023 2:07 PM

Ulcerative Colitis
Where is everyone?

Clo -- Good that the doc is happy with the scope after the ordeal you went through with the nurses. How are you feeling?...

5/8/2023 8:54 AM

Ulcerative Colitis
Still on Remicade

Do you take any pre-meds with your infusion? If not, you might want to ask your doc about that. I have heard that some people get a benedryl infusion right before the remicade to prevent reactions....

5/8/2023 8:52 AM

Ulcerative Colitis
Rinvoq (Upadacitinib)

Congrats on the good scope, Major!! And congrats to Sarah too!!...

5/4/2023 5:20 PM

Ulcerative Colitis
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