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Remicade and rotator cuff surgery

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Ulcerative Colitis
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Posted 1/12/2024 1:34 PM (GMT 0)
Hi! Still on Remicade and in remission . Having rotator cuff surgery in 3 weeks. Surgeon wants me to wait 4 weeks after surgery to have next infusion. I’m on a 4 week schedule. My appointment for in fusion is the 9th of February. Procedure is the 1st. Called the GI he said it was not a good idea to wait on infusion, Hope I'm not making a mistake by leaving my infusion appointment as scheduled for the 9th. I guess i made my choice, hope it was the right one! Any thoughts?

Faith
Posted 1/12/2024 3:58 PM (GMT 0)
Faithmac, I agree with your gi, back when the crohns forum was really active there was plenty of members on Remicade. The only time Remicade was withheld was one week prior to surgery. Infusions were not delayed after surgery. I had a few knee scopes done while on Remicade & it did not affect my healing at all.

Good luck with your surgery & please remind us before your surgery.
Posted 1/13/2024 3:11 AM (GMT 0)
Faithmac,

I'm on Remicade and I've had surgery 4 times now.. and depending upon how I am doing health wise we have done different things.

We try to schedule it at least 3 weeks after my infusion.... And they try to have me wait at least another 3 weeks after surgery before I have an infusion. When I developed an infection after one of my surgeries we delayed it to almost 3 months after the surgery which was already 4 weeks after my infusion. You can't fight off those infections so you need to be careful...

The infection was internal... I developed chills at night, felt lethargic, and my WBC just increased a little above normal... But they were not taking any chances.

I did develop antibodies to Remicade... We checked when we started doing labs for the infection.... I believe I was at 5 weeks after infusion at that point... Antibiotics for a week... Still infected... IV antibiotics for 2 weeks then.... Waited another 2 weeks and then started me in larger doses of methotrexate to drive down antibodies.... Used premed, did infusion over 5 hour period.... Still had some reactions so I took Benadryl every 4 to 6 hours for another period of time after infusions. We increased the amount of Remicade, decreased time between infusions, got trough level up to about 30? And then we started to slowly use less Benadryl after infusions and then we backed down the methotrexate amount. Methotrexate doesn't negate Remicade antibodies for everyone but it does for some. It's done it for me 3 times now ...

BUT.... On my kidney surgeries he went in 4 days after infusion and I had my next infusion at the 4 week mark... AND he didn't give me any antibiotics after surgery. He was a young doctor and he showed me studies that indicated that it's ok for most patients... I was very uncomfortable that time... And the next time he did it again.... But I didn't get any infections.... But boy ..I was so watching for one..

I grilled the kidney doctor on his studies and even called my CRS and GI and PCP..... Only when my infectious disease doctor told me that things have changed and that it should be fine was so ok....
Well...

Sorta ok.... Lol.

Let me know if you have questions.

Good luck on your surgery. I'll be saying lots of prayers for you.

Clo

Post Edited (clo2014) : 1/12/2024 7:20:04 PM (GMT-8)

Posted 1/13/2024 7:05 AM (GMT 0)
Faithmac-- are you pursuing the cuff surgery because PT failed? I ask because my age 64-ish dentist was about to schedule the surgery then decided it is harder on females than males, after more personal research. She then hired a younger dentist to take over most of her practice, and opted for long-time shoulder PT which is going well. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 1/13/2024 5:27 PM (GMT 0)
Clo - do you take remicade with MTX? (I forget sorry) It's just if you're taking 2 immunosuppressants at the same time that will also have different risks for surgery.
Posted 1/14/2024 9:39 PM (GMT 0)
Yes I am taking methotrexate. After my surgeries my GI has evaluated how I'm doing and checked my labs... And he's raised the methotrexate amount taken to try to counteracts the antibodies I developed because of the delay in infusions.

I currently take 15 mg per week via tablet form. (After PG we decided not to do injections) We raised it up to 30 to 40? mg per week for very short periods of time while combating the reactions I was having after my infusions---when the antibody tests indicated antibody levels above 7. Thankfully the reactions have improved and my antibody levels are below 3. (We also alternated dosages higher to lower week to week. Methotrexate makes me really ill.)

The thought of increasing the methotrexate and Remicade dosage right after surgery did and does cause me concern.... But... Knock on wood.... So far it's been working. I only developed the one infection and the GI, CRS, infectious disease doctor all agreed and started IV antibiotics daily for 2 or 3 weeks.

We've been able to keep me on Remicade, after surgeries, after the development of antibodies and reactions, and gradually decrease the Remicade amount, stretch the infusion time periods and lower the amount of methotrexate I take. It's definitely been nerve wracking at times. I recommend using a team of good doctors.

These are decisions that everyone needs to discuss with all of their doctors before surgery. You need Plan A, Plan B, Plan C.... So you know if this happens we will do this, then if that happens we will do that.

I wish you the best of luck.

Clo
Posted 1/14/2024 9:45 PM (GMT 0)
Just a quick note... My 4 large surgeries were due to Crohn's. Those were the ones we had to adjust Remicade and methotrexate dosages and scheduling.

My kidney surgeries were much different. We didn't withhold or delay any medications, change any time-frames or change any dosage. He went in and did it, sent me home the same day and I did ok.

On all surgeries we didn't do antibiotics until they knew I had an infection.

Clo

Post Edited (clo2014) : 1/14/2024 1:50:05 PM (GMT-8)

Posted 1/14/2024 10:18 PM (GMT 0)
Thanks everyone! No I haven’t done PT. We discussed my options. Said if i wait I might eventually need a full shoulder replacement . Will have 3 months of PT after procedure. Doesn’t sound like fun🥹. My GI and the oncologist who monitors my infusions didn’t seem concerned. Bought a cold ice machine. Could have rented one. Might be using it longer than suggested. I’m not making myself crazy over this. Hopefully i wont need the pain meds for long. I dont do well with them. That’s what’s worrying me!

Faith
Posted 1/26/2024 3:06 AM (GMT 0)
Stick with the plan... do not delay the Remicade .. and do not worry. My doc says there are no contraindications to surgery and Remicade.
Posted 1/26/2024 3:11 AM (GMT 0)
Faith,

Checking in on you..How are you?. Have you had your surgery?

Clo
Posted 6/6/2024 2:29 AM (GMT 0)
Faithmac, it's been since January since we have heard from you. Please give us an update when you can.
Posted 6/16/2024 9:11 PM (GMT 0)
I hope Faithmac is doing well. She did say she would need 3 months of PT following the Feb. 1 surgery-- so that would take her into May. Also had posted that she was worried about possible bad effects from pain meds. So it would be reassuring to get an update from her soon. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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