HealingWell
Search Close Search
☰

Not sure what to expect

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/18/2023 8:18 PM (GMT -8)
Hi everybody - this forum has some great information, and I could really use some input from your experiences. I'm just not sure what to expect from my current treatment regimen and hopes for remission.

I was diagnosed in June 2022 with mild to moderate UC and started mesalamine. Early on, I felt like the mesalamine affected my breathing, so I stopped it and was able to go about a month with no meds and just being careful with my diet and getting acupuncture and using Chinese herbs. Then I got COVID in August which caused a flare, so I went back to the mesalamine. The breathing problems were worse and I had other side effects and my condition worsened. I was not happy with my doctor or her nurse and requested a transfer to another doc in the system. By November, I was in a full blown flare w/6+ trips per day to the bathroom, all diarrhea and bloody mucus. The first dr. put me on 20mg then 40mg of prednisone to no effect, so I was admitted to the hospital and transferred to the doctor of my choice. After a CT and flex sig, I was put on 60mg methylprednisolone and then an infusion of Remicade (10mg/kg). The bleeding stopped after a few days and I started to feel good until I missed the next infusion (due to insurance glitch and holiday scheduling). After hospital discharge I went a week on 60mg prednisone, then a week at 50mg, then 40mg when I started to bleed again, so new doc admitted me to hospital to get the 2nd infusion. Again I started to feel good (I did an extra week on 40mg prednisone but continued to taper) and the bleeding stopped...until it started again around the 2 week mark. The doctor has slowed the prednisone taper to 5mg per week, so I am now on 25mg/day. My next infusion is Jan 30, and the doc wants a blood test done on Jan 28. I also use enemas each night, alternating between cortifoam and hydrocortisone for various reasons.

So, my questions are: what should I be expecting from Remicade? Should I expect to continue to have some level 2 or 3 abdominal pain and bleeding once or twice a day until it works? When do you decide that a drug is not working?

Thank you for any guidance!

Best,
Ceci
Posted 1/18/2023 9:40 PM (GMT -8)
Welcome to the UC Forum! I can't comment on Remicade, but let me caution you on just walking away from treatment if it disagrees with you, as in your initial experience with mesalamine. You should have reported the respiratory symptoms to your prescribing doctor ASAP. (I write that because I cannot tolerate the mesalamine Apriso due to breathing effects, but the older mesalamine Colazal is my saving UC med.) It sounds like your successor doctor(s) then put you on Remicade because high-dose Prednisone wasn't stopping your bleeding, but the infusion scheduling didn't work out, then you ended up hospitalized again. Do you have insurance that will cover out-patient Remicade infusions? Probably the doctor now treating you is trying to test your response post-infusions to determine what med-delivery schedule you should be on. It can take longer than one hopes to get on the right UC med plus insurance to pay for it, plus you might have gotten a setback from COVID infection besides. If your doctors haven't given you adequate information on treatment for UC and you're in the U.S., you can try the ccfa.org Website for further basic info. You could also benefit from reliable dietary & nutrition info. for UC patients. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 1/18/2023 10:02 PM (GMT -8)
Thank you! I did report the problems with mesalamine right away and all along the way. That’s one of the reasons I was unhappy with the first doctor. I asked for other medications as well as pain management. She was not responsive. Then her nurse suggested prednisone even though she saw that it was listed under drugs I was allergic to. I went for it anyway and did not have the same problems as I did years ago when it was put on my allergy list. I was not pleased that there was no consultation or discussion about either my issues with mesalamine or prednisone.
Posted 1/18/2023 10:18 PM (GMT -8)
My insurance will cover out-patient Remicade.
I have done a good deal of research on diet and will see a nutritionist next week.

I appreciate your statement that it can take longer than one hopes to find the right UC med. When I began to feel better, I was so hopeful, but then the setbacks were disheartening. It’s hard for me to explain to my employer what to expect when I don’t know myself.
Posted 1/19/2023 5:36 AM (GMT -8)
You have had 2 doses of Remicade if I am reading your post correctly & should have 1 more loading dose to go. It's too soon to know if the Remicade will work, the prednisone is helping no doubt. It many take a few more infusions to get you feeling a whole lot better. A severe flare up like yours it just takes time for meds to kick in. After I did the loading doses I could tell a little difference, each infusion the same thing. By 6 months I was doing much better, I have crohns. Try not to let this get you down, all medications take time to work.

Take care.
Posted 1/19/2023 9:57 AM (GMT -8)
Thank you Susie! You are correct that I have only had 2 doses of Remicade and I’m tapering down the prednisone, so there is less of it to be helpful. I appreciate knowing that it might take a # of months to see whether Remicade works for me - especially since my flare was severe.
Posted 1/19/2023 10:53 AM (GMT -8)
I have severe fistulizing Crohn's and UC. I have been on dual therapy, remicade & methotrexate, since 2015. (Dual therapy helps prevent antibodies from forming and makes it so that you are able to stay on Remicade for a longer period of time, and the Remicade actually works better because there are fewer antibodies developed.) It worked immediately for me. My trips to the bathroom went from 30 a day to 15, then 7, then 4 to 6. The reason we could not get them lower was because of a rectovagina fistula causing incontinence. I have also had to incorporate Prednisone into my meds occasionally during flares.

Personally, I'd research insurance payments, what my out of pocket expense would be, and the patient assistance program thru Jansen on the Remicade. I'd move very quickly on this and strictly adhere to the infusion schedule going forward. Missing doses can cause antibodies to develop quicker--which can diminish Remicade effectiveness.

You haven't finished out your loading infusions. I'd be patient but deligent. Pursue treatments, advocate with your doctor's, (if they won't listen advocate daily for a new doctor, and if the doctor is in a big conglomerate find someplace else to go--been there done that.)stay on top of your insurance and scheduling. I ended up with a colostomy because my disease was so severe the colon developed scar tissue during the healing process, caused obstructions, and the inflammation caused fistulas leading to incontinence. Not trying to scare you but... You do need to really stay on top of this disease.

Please let me know if you have questions.

Good luck,
Clo

From my colostomy up my intestines are good. I still have scar tissue and must be careful with my diet. I don't feel the burning disease pain there any longer.... But I do have to deal with the pain of narrowed intestines. My extra intestinal symptoms are from a 4 to 6 inch piece of colon called a Hartman's pouch that is attached to my anus. That portion of my intestines still has active disease in it.

Post Edited (clo2014) : 1/19/2023 10:57:09 AM (GMT-8)

Posted 1/19/2023 12:57 PM (GMT -8)
Wow - thank you for this advice!!
Posted 1/19/2023 1:32 PM (GMT -8)
It's not clear to me what your dosing schedule is for remicade. The standard is 3 loading doses at weeks 0, 2 and 6 to build up levels of the medication, then every 8 weeks after that (can be adjusted to every 4 or 6 weeks depending on response). I see they gave you a high dose in the hospital which is good but if the gap between the 1st and 2nd infusions was large it may explain why your symptoms came back. Good for you for advocating for a better doctor. Unfortunately it can take a while to find someone who is both knowledgeable about IBD and proactive in initiating treatment.

A drug is working if your symptoms improve! At the same time it can be hard to tell which drug is working if you're on more than one at a time, and there can be a rebound in symptoms as you taper off prednisone. And sometimes a drug can help you but the response is insufficient for an acceptable quality of life and then it's also wise to change to a different treatment.

For what it's worth i gave remicade 5 infusions (the last 2 at 10mg/kg) so i was on it for 6 or 7 months, before switching to something else. It did help me but i flared horribly once i dropped prednisone below 10mg and i didn't want to be stuck on prednisone forever, so that's why i gave up on remicade.
Posted 1/19/2023 4:52 PM (GMT -8)
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 your blood work on the 28th?

It can take a while to get to full remission, but it's good that you had a response to it already. I think I started seeing improvement after my 2nd loading dose but I was also tapering high dose pred. It took me almost 2 years to reach full remission with lots of dosage changes (see my sig). It was sometimes 2 steps forward and 1 back.

(Geesh Clo is right! I am patient lol)
Posted 1/19/2023 6:41 PM (GMT -8)
Hi - sorry for the confusion. I listed my Remicade infusions in my signature line, but I don't think it showed up in my original post. The first dose (10mg/kg) was on December 11. I was supposed to get my 2nd dose 2 weeks later which would fall on Christmas, December 25, but there was a problem with insurance (the hospital requested approval without sharing my medical history, so the approval was denied. When I called, insurance said not to dispute the disapproval and just send a new request with the right information. The plan was that I would get the next infusion on Dec 28. The week before Christmas, I continued to urge all of the doctor's staff to please just submit a new one, but they continued to dispute the disapproval). Offices were closed on Dec 26 and 27, so when the doctor finally got my note about the fact that bleeding returned, the doctor decided on Dec 29 for me to be admitted to the hospital for the sole purpose of getting the infusion. But, no beds were available until Dec 30. I went to the hospital as soon as a bed was available that evening and received the 2nd infusion late at night on December 30 and was discharged the next day. The 3rd dose is 4 weeks from the 2nd. The 4th is scheduled for 8 weeks later, as is the 5th. I have to schedule the 6th for 8 weeks after that.

I believe I will be getting 10mg/kg on Jan 30 and that the Jan 28 blood test is probably looking for antibodies.

Poopydoop: were you on prednisone for those 6-7 months when Remicade seemed to help? I cannot stay on prednisone much longer because it has caused bone marrow edema in my hip which has severely impaired my ability to walk/stand and it can lead to avascular osteonecrosis which might require a hip replacement.
Posted 1/19/2023 7:19 PM (GMT -8)
Oh gosh....

On the timing I don't think it will make that much of a difference...it wasn't late by 3 or 4 weeks....or months out.... although....my doctor told me at the beginning that I could not miss the 2nd dose or be late with the loading doses as the possibility of antibody growth increases ... So unsure about that... It's always good to get antibody levels checked. If they are high they can try dual therapy.... Or they know to watch you carefully and to develop a back up plan. My doc wants my Remicade level... For me... To be above 13. Every person's number is different. And remember if you go off a biologic the chances of restarting it later down the road are not good.

Your doctor's assistance should have listened to you.... But then again

....they did put you back into the hospital so you could get the next dose. (I'd make sure they got it straightened out asap. If the staff had to suffer from the symptoms of IBD they'd have a different attitude.)

And about "The Devil's Tik Toks", I was on Prednison when I first started out and a few times since. Be very careful with those things. I now use a walker, plus my thumbs, back, elbows and hips now have Little to no cartilage. I see a rheumatologist and various other surgeons that are trying to figure out if they can help me now. Please stay on top of that and try to get off asap. Some people can take that med and not have issues while others are not so lucky.

I started tapering after my starter doses. It was a fast taper from 80 mg to 40 to 20 to 10 to 5 then off...so a little over a month and I was off. I had complained about my knees and hips and once we saw the CT scan he got me off quickly. We have only used it when I went into really bad uncontrollable flares while still on my meds... But late taking doses because of surgeries. I developed antibodies and taking methotrexate drove them back down--but that doesn't happen for everyone. I have just been lucky in that aspect. So.... Please be careful.

And I want you to remember... I am that rare case of UC/Crohn's that was so severe my GI told me if Remicade did not work I could expect to live 3 to 6 months. I am that worse case scenario and yet.... Once we found a good GI, built a good team of doctors and found what works...I stabilized.

So hang in there. Advocate for yourself. Hope for the best, prepare for the worse, and finally trust but verify.

Clo

Post Edited (clo2014) : 1/19/2023 7:41:55 PM (GMT-8)

Posted 1/19/2023 7:29 PM (GMT -8)
One more thing....you could apply for FMLA in regards to work. You can read more on it at the Crohn's and Colitis website. I can't get my phone to copy and paste. Or Google FMLA and IBD (or UC or Crohn's)

If approved it will give you additional unpaid time off that can not be used against you. It will also help if there are accomodations that you need for work... Like sitting you closer to a bathroom, getting you a better chair because if your medical condition or allowing you to bring in your own and taking time off for appointments.

Clo
Posted 1/19/2023 7:38 PM (GMT -8)
And yet another thought.... My doctor goes in aggressively to try to stop flares so with his patients now... If they have any issues at the beginning of their treatment with the med wearing off more quickly... He goes for 10 every 4 weeks right after the loading docs until they start to improve and then he decreases the amount and lengthens the time frame gradually.

Maybe this is something you could talk to your doctor about?

I promise .. no more tonight from me.

Clo
Posted 1/19/2023 8:28 PM (GMT -8)
Thank you so much, Clo!

smile
Posted 1/20/2023 12:27 PM (GMT -8)
Hi ceci
Yes I was on prednisone throughout my time on remicade. I spent the first two months on a taper to 5mg then stayed on 5mg. That was the lowest dose i could take while remaining somewhat functional in my daily life. In total i was on prednisone for 2 years, mostly at doses of 15mg or less. I was badly managed by my first hospital and ended up with severe osteoporosis in my spine (which i only found that out when i changed to a different hospital and they did a dexa scan). I hate prednisone and will never take it again unless it's a matter of life and death. [I have been on medication for the osteoporosis for several years and while that has helped, my bone density is still 40% below normal]
Posted 1/21/2023 5:49 PM (GMT -8)
Being on prednisone for a month caused hip problems for you? It doesnt sound like it works for you anyway. Do you think it is doing anything helpful? Your post sounds like you only really improved from remicade. I think I was in remission from remicade after the loading doses. It only worked for a couple months for me though. You should consider xeljanz if it doesn't work. It's a pill and has both me and my boyfriend in remission (we both have UC). 6 BMs a day is a pretty mild flare, in my opinion but any pain and blood are never good. The pain is the worst symptoms for me. Hope you reach remission soon.
✚ New Topic ✚ Reply