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Ulcerative Colitis
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Posted 7/20/2023 2:54 PM (GMT 0)
I was diagnosed with pancolitis back in January......Humira and pred. did not work so Gastro Dr. upgraded me to Renflexis infusion on May 11 along with more pred. Pred. ended last week (gained 20 lbs.) and my 3rd infusion was on June 28th. The next one is scheduled for Aug. 23rd. I have returned going at least 10x a day/night with quick urges and runs so back to needing diapers again. Next consult is August 1st so very desperate now for answers. Trapped inside my home 95% of time due to issue. Wondering if opting for hospitalization would service my condition better? I am a Veteran being see at VA Hospital.
Posted 7/20/2023 3:10 PM (GMT 0)
Wayne, if ER decides to admit you be prepared for going back on prednisone, if they don't admit you they will put you back on it. Myself, I think the VA had you do the taper too fast. If I remember correctly they had you dropping 10mg each time, while some can do this, many cannot. Only you can decide if you feel bad enough to go through ER to see what happens. We all hate the weight gain from prednisone but it too can be temporary.

Keep us posted on what you decide.
Posted 7/20/2023 3:48 PM (GMT 0)
The taper began at 60mg every week dropping 10mg every week thereafter so a total of 6 weeks duration. I hate the weight gain, but at this stage I'm ready to do anything necessary including being hospitalized to find real answers to get this under control.
Posted 7/20/2023 4:08 PM (GMT 0)
I think all they'd do in the hospital is put you back on steroids, but you could ask your doctor if they have any suggestions. Sorry you aren't feeling well still.
Posted 7/21/2023 1:59 AM (GMT 0)
Wayne,

I am Sorry you are struggling. Regardless of your decision (hospital or GI) someone will try to put you on steroids... But you may need to do that until your body has a chance to heal.

I think your taper was too fast and that your doctor took you off steroids too soon. My GI once told me that sometimes you have to be patient and allow things to "mesh".

Reach out to your GI. Explain that you are struggling and how. Ask him what he advises.

My GI once told me not to be "popping on and off Prednisone" . It is not good for your body to go thru that kind of confusion. I don't know where I got the idea...but it was like if you do that enough times eventually Prednisone won't be able to bail you out when you are in trouble.... But I don't know that for sure and so far it still works for me...and I didn't research that...so I am unsure.... I just know the thought of my "emergency" med not working changed how I approached things. I still hate the med but will take it if I have to.

He basically told me to sh1t or get off the pot... To commit to my treatment ..to trying something until my intestines were recovered enough and my main meds were working well enough to allow me to get off steroids. I think he was very frustrated with my complaints about my reactions to Prednisone. So be prepared for your doctor to maybe be a little short with you....

Please let us know how it goes.

Clo

Post Edited (clo2014) : 7/20/2023 6:11:52 PM (GMT-8)

Posted 7/30/2023 6:17 AM (GMT 0)
Wayne, just checking on you, let us know how you are doing when you get the time.
Posted 7/30/2023 2:38 PM (GMT 0)
I am getting with my GI on Tuesday and I'll ask the Q if being hospitalized just means going back on prednisone......if so well I can do that as an outpatient. My last prednisone prescription ran out two weeks before my upcoming consult so for the past two weeks it has been just brown water 10x a day.....up twice at night. I'm dealing with VA Medical so wondering if they are really advising/treating me properly? Any thoughts about how I can better advocate before my consult?
Posted 7/30/2023 3:54 PM (GMT 0)
In all honesty based on what you have written here the VA has been giving you the standard care most gi drs would give. I am very familiar with some of the horrible care veterans can receive at some facilities.

A couple of things that was mentioned to you here was taking something OTC to help bulk up your stools, not sure if you ever did that.

The other thing was doing a slower taper with the Prednisone. You were dropping 10mg at a time & some folks has to drop it by 5mg. As long as you don't have any infections, I would take Imodium, I keep it on hand at all times.

Ask your dr what other options are available to you. I can't remember how long you have been on your current biologic.

Let us know the appt goes.
Posted 7/30/2023 4:04 PM (GMT 0)
straydog.......been on Renflexis since May 11.....3 loads to date next scheduled for Aug. 23. I agree the taper down was too fast.......I'll suggest to GI tapering down at 5mg. segments this time on pred. What is a good OTC for stools?
Posted 7/30/2023 6:44 PM (GMT 0)
Extra strength Imodium gel caps, this works like a charm for me.
Posted 7/30/2023 7:58 PM (GMT 0)
I’m sorry you’re going thru this WayneTX! I’m currently tapering prednisone myself for a flare and starting a new medicine (Stelara) so I can empathize. I’d say yeah, prob slow the pred taper to dropping by 5mg - I’m doing the same right now and it def is not fun. Did you feel any improvement/relief before your symptoms returned? When I’ve been hospitalized it’s been because my flare was snowballing and they had to keep an eye on fever, possible infection, etc and also give me IV fluids, pain meds, and steroids. Once all that was under control (as in I was still very sick but not in danger of dehydration or infection) they would send me home to recover. I would then have to just rest, really modify what I ate, stay super hydrated and try to manage the stress of the whole situation. It is tough when you’re in the middle of it but there are lots of people here in the same boat for support.
I really hope the new medicine works for you! Thank you for your service! ☺️
Posted 7/30/2023 9:56 PM (GMT 0)
Normally, I preach patience. But it doesn't sound like you have had any improvement at all by the end of the loading doses. Seems like there should have been some improvements. It can take a while to get to full remission, but there should be some progress. Start researching alternatives so you can discuss with your doc when you see him.

Immodium will help to slow things down, Adding benefiber or metamucil will add fiber to help bulk things.

I am 99% sure that going to the hospital will just put you back on steroids. There isn't any special treatment that the hospital can do to get you out of a flare. The hospital can give you IV steroids and fluids if you are dehydrated and do a bunch of tests. Only you can say how sick you are. If you are weak and dehydrated a trip to urgent care might not be a bad idea.
Posted 7/30/2023 11:29 PM (GMT 0)
I agree with CCinPA. You should be seeing some improvement by now on the renflexis.

Since you're not seeing improvement:

1. Have they done stool cultures to rule out infections, including c. diff?
2. Did you have any response at all when you first started Humira? Or no response at all?
3. Did you have any blood tests done while on Humira to check your blood levels of the drug and to test for antibodies?
4. Now that you're on Renflexis, have you had blood tests to check your levels of it?

Depending on those results, it might be time to give up on the anti-TNFs and move to another medication class (anti-interleukin or JAK inhibitors).
Posted 7/31/2023 3:20 AM (GMT 0)
I am so grateful for all the advise as it helps me to ask better questions. I have already gained some insight that was not given to me by my GI so got some questions there to ask. In short, they started me out on 4-weeks of pred. and Humira and nothing happened so they sent a stool test to Mayo Clinic. Mayo said I had antibodies to Humira so then back to the drawing board. On May 11, they started me on Renflexis infusions and restarted me on 6- weeks of pred. starting at 60 mg. dropping 10 mg. every week. I have been without pred. for nearly 2 weeks now. Next infusion is Aug. 23. I was doing better at the higher levels of pred. and not going as much and with no sudden urges but gained 20 pounds too. I have no idea if Renflexis is working for me now either (might just need more time ???). I don't have any stool right not to be tested??? I now expect from input that my GI will put me back on pred. again in a few more days. I don't have any other issues other than wearing diapers due to sudden urges, stuck at home due to 10-12 trips to the toilet a day and twice during night. I am probably not a candidate for hospital stay if just pred. is mainly involved as I can do that outpatient. I am going to look into Imodium. Just frustrated. Keep the advice coming as it gives me great questions to ask on Tuesday. Thanks !!!!

Post Edited (WayneTX) : 7/30/2023 7:56:01 PM (GMT-8)

Posted 7/31/2023 4:31 AM (GMT 0)
Don't you mean *blood tests* for antibodies to Humira?
Posted 7/31/2023 5:39 AM (GMT 0)
They wanted a stool sample at VA.
Posted 7/31/2023 6:38 AM (GMT 0)
a stool sample would be used to test for infections and possibly to check levels of fecal calprotectin, a protein found in stool that is a marker for inflammation in the colon.

A blood test would be needed to check levels of the drug (humira or renflexis) in your body and to test for antibodies to the drug if you have them.
Posted 7/31/2023 10:40 AM (GMT 0)
Agree with beave -- blood tests are needed to check for antibodies to meds. Stool tests check for pathogens or inflammation.

Think back to when you first started on meds. Are you symptoms today the same, better or worse than that time? Unless there has been some improvement from then to now (NOT including what happened while you were on pred) it seems as though TNF inhibitors are not working for you. There are several other classes of meds so I am confident you will find one that works and get you well so you can move on with living.
Posted 7/31/2023 1:10 PM (GMT 0)
thanks for smarting me up..........now I know Renflexis is evaluated through a blood test not stool and yes I was checked negative for c. diff? I will seek a blood test ASAP to see if Renflexis is working? I have no desire to continue being a sick VA guinea pig when blood tests can evaluate if working or not.

Post Edited (WayneTX) : 7/31/2023 5:16:07 AM (GMT-8)

Posted 8/1/2023 3:30 AM (GMT 0)
Wayne,

The test should tell you a " trough" level and an antibody level. My GI said when you are on a TNF and you have developed antibodies to one you may be more prone to develop antibodies to another. Absolutely get those checked.

On the Imodium....that's what I use also. Plus I start eating things that I know "bind" me up a little more...like rice, bananas, marshmellows..... I avoid caffeinated drinks, juices, applesauce. I also go on a blander diet.

If you get a "raw" butt....Calmoseptine is wonderful. It stays on and protects. It's behind the counter at the pharmacies.

Good luck on your doctor appointment. Please let us know how it goes.

Clo
Posted 8/2/2023 3:09 PM (GMT 0)
WayneTX,

How are you?

Clo
Posted 8/4/2023 5:08 AM (GMT 0)
I doubt they'll do an antibody or trough test this early. I think they'd at least wait until your next infusion. Those blood tests have to be taken a day or 2 right before an infusion. They can't just be taken any time. It's a little more complicated than just a simple blood test to tell you if it will work or not but it is a good thing to inquire about.

Also stool tests don't just check for c diff and other pathogens. There is a stool test called calprotectin that checks inflammation levels. The VA may be wanting that. You can ask the name of the test. It's a very common test for us.
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