My Daughters ongoing saga.

For the veterans here, some will remember the many concerns I've posted about regarding my Daughters Crohn's related issues over the last several months. For those unfamiliar, and as a refresher, I'll try to give a brief recap, and result of her GI consult today addressing most of the issues shes having.

She's been dealing with, (in no particular order), pretty severe joint/body pains, skin breakouts, rashes etc, very low iron even after several infusions, a high fecal cal, positive ANA, suspected drug induced lupus, or actual lupus.

I think that covers the most significant of things going on. She has also seen a Rheumatologist who has ruled out lupus. Her GI is feeling strongly now that most of her issues are as a result of anti-bodies to Remicade, although she wants to see more blood work. She did state something I've never heard before, that some patients in remission have inflammation manifest itself in other areas of the body.

Her strategy for now is to take a 3 month "drug holiday". No remicade. She'll monitor her symptoms and along with more blood work decide at that point whether to restart Remicade, or transition to Humira. Since she had such a positive response to Remicade, (10 years), that the liklihood as positive with Humira. Also, if her body/joint pains improve, then that would likely indicte that Remicade is likely responsible.

As for her skin, which has been really a problem, by complete chance, her GI brought in a dermatologist from Britian thats working at the Hospital for a few months. She took one look at my Daughters face, and told her she has Rosacea. Unmistakenly. This Doctor can't treat her due to her status, but we'll now be referred to a local dermatologist to proceed with treatment.

I think that's about it for now. Sorry if I got too long. I remember years ago, Nanners would always emphasis paragraphs. I try to do that with longer posts.

Gosh, I am so glad you are getting some answers and have a game plan.

When they took me off Remicade in 2021 for surgery--I felt so much better in so many ways. But my blood work started coming back showing issues so they decided that we would have to try Remicade again. I was off for alittle over 12 weeks. My antibodies multiplied during that time--so we are trying to lower them with methotrexate. It's working so far. (Slowly)

My rheumatologist calls my arthritis "Crohn's Arthritis" she thinks it is inflammation, caused by Crohn's, which has moved to another portion of my body. (Much like the extra intestinal manifestation of Crohn's works) We have not found anything to help it--and being back on Remicade has made it much worse. The Prednisone destroyed my cartilage so I now have an appointment with a sports doctor that specialized in different injection therapies and surgery. So I am unsure what the answer is. If your daughter finds out please let me know.

You and your family are in my thoughts and prayers...

Clo

Hi 73monte....ive just read your post after posting something similar myself....similar to your daughter i have some vague issues that are similar to IBD extra intestional stuff but have no sign of colonic inflammation....im not on a biologic though....just on 6mp....but still similar to what your daughter is going through...

can you describe her joint pains....does she have bad fatigue?

73monte
Hope your daughter’s new extraintestinal symptoms get better during this drug-free phase. Did she have Remicade antibodies measured before taking your daughter off of Remicade? Keeping my fingers crossed that her Crohn’s will be tame and under control when she’s Remicade free. My GI told me before that it’s a 50% trial: Some people succeed in getting off Remicade while others fail. I was one of the 50% who failed to stop Remicade. In 2019 when my perianal fistula was claimed to have healed, my GI tried to stop Remicade. I was then on monthly infusions. When more than 2 months had passed, I relapsed and had a severe flare up. I took my infusion and my GI informed me then that I was not ready for stopping Remicade yet. Hope your daughter has a better luck than mine and all her symptoms subside soon.

73monte,

I am hoping for the best for your daughter.

If you are like me you are researching and planning. So I wanted to reach out before I forget....

Sometimes you can restart Remicade. I have done it successfully twice and we are trying for the 3rd time. I was off for approximately 12 to alittle over 16 weeks. Each time they tested my antibodies - were higher than 17. Remicade trough levels were at 0 to less than 3 with a notation of approximately 1. We did not do loading doses for any of my restarts.

1st restart, started methotrexate 2 weeks prior to infusion. Premeds, 10 kg Remicade ran as slow as possible (4 hours), Benedryl at 2 tablets every 6 hours for 24 hours after the infusion. Infusions took place every 8 weeks.

2nd restart, started methotrexate 1 week prior to infusion. Premeds, 5 kg Remicade ran at 4 hours, benedryl 2 tablets every 6 hours for 12 hours after infusion. Infusion took place every 6 wks.

It took approximately 6 months to get Remicade level to 10 with antibodies at 0. After I reached that level we were able to stop premeds. I had to continue taking methotrexate at 10 to 12.5 mg once weekly.

Prior to 3rd restart I was off methotrexate for 6 months. No infusions for 16 weeks. Planned Infusions every 8 weeks.at 7.5 kg. Changed to every 6 weeks at 7.5 after 1st infusion.

3rd restart, I started methotrexate 12.5 mg weekly 1 week before restart infusion, no premeds..no benedryl after infusion. 1st infusion went ok-although my chest felt tight after infusion. 2nd infusion I started coughing 1 hour in--we did premeds and benedryl after(2 tabs every 6 hours for 24 hours). 3rd infusion premeds and benedryl at 2 tabs every 6 hours for 12 hours. No issues. I am waiting on 4th infusion. (Infusions every 6 weeks at 7.5 kg Remicade now. Current Remicade levels up to 4.7 or 4.9 with antibodies down to 3. Numbers improving after each infusion.)

I am not saying this works for everyone. It's just what's worked for me. My GI stated that methotrexate, in some patients, will drive antibodies down to zero and make a restart possible. There are some restarts that he does utilizes the loading doses with--but sometimes it isn't necessary. I share this so that you know that if she needs a Remicade holiday it is possible to do a restart for some people. Of course if Remicade is causing her joint pain she may not want to go back on it. (I swear my knees hurt more right after my infusions)

Please let us know how it goes....

Clo

Post Edited (clo2014) : 2/18/2022 10:26:47 PM (GMT-7)

Tom,

You are welcome. Please let us know how it goes.

You all are in my thoughts and prayers.

Clo

73monte,

Thinking of your daughter. I hope things are going well.

Clo

73Monte, your daughter must be my clone. I too started on Remicade back in 2006 & did build antibodies to it.
I started the Remicade with Imuran along with it to keep me from rejecting it. I built antibodies to the Remicade and then transitioned to Humira/Imuran. This finally put me in remission " a loose term" for 16 years! I love my Humira. However, last year my GI decided to see what would happen if I stopped the Imuran. Well, what had long been considered Crohn's arthritis, by my rheumatologist, became a breakthrough case of psoriatic arthritis complete with the psoriasis breakout on my shins, chest, arms, and hands. The GI then put me on 6 azathioprine 10mg tablets weekly in place of the Imuran along with the Humira. Bingo! The psoriasis cleared within 6 weeks. The joint pain improved but did not entirely go away. Still have problems with my ankles & feet when standing too long or wearing anything other than Crocs. That said, I am 60 years old and have been diagnosed since 2006. Don't be afraid of the Humira. It is the best of the best and has a long track record of patient history above all the other biologic drugs. Unfortunately, I may no longer be able to afford mine & am in the process of alternatives. Humira, is made by AbbVie Pharmaceuticals & they have a savings card that applies additional monies above & beyond insurance copays. AbbVie needs to let their patent expire on Humira so it could be made as a generic. A patented drug comes up for review every 10 years to see if it can be made as a generic. AbbVie has refused to give up the patent on Humira and keeps renewing it's patent in original form. Funny how they say a biologic drug is hard to copy to a generic drug but they have developed so many bio similar drugs for all kinds of inflammatory conditions. It is also not uncommon for Crohn's patients to develop other inflammatory conditions as time goes by. I have fibromyalgia, psoriatic arthritis in addition to the Crohns'. Please keep us posted how she is doing and know I am here to help if I can.

broomhilda said...
73Monte, your daughter must be my clone. I too started on Remicade back in 2006 & did build antibodies to it.
I started the Remicade with Imuran along with it to keep me from rejecting it. I built antibodies to the Remicade and then transitioned to Humira/Imuran. This finally put me in remission " a loose term" for 16 years! I love my Humira. However, last year my GI decided to see what would happen if I stopped the Imuran. Well, what had long been considered Crohn's arthritis, by my rheumatologist, became a breakthrough case of psoriatic arthritis complete with the psoriasis breakout on my shins, chest, arms, and hands. The GI then put me on 6 azathioprine 10mg tablets weekly in place of the Imuran along with the Humira. Bingo! The psoriasis cleared within 6 weeks. The joint pain improved but did not entirely go away. Still have problems with my ankles & feet when standing too long or wearing anything other than Crocs. That said, I am 60 years old and have been diagnosed since 2006. Don't be afraid of the Humira. It is the best of the best and has a long track record of patient history above all the other biologic drugs. Unfortunately, I may no longer be able to afford mine & am in the process of alternatives. Humira, is made by AbbVie Pharmaceuticals & they have a savings card that applies additional monies above & beyond insurance copays. AbbVie needs to let their patent expire on Humira so it could be made as a generic. A patented drug comes up for review every 10 years to see if it can be made as a generic. AbbVie has refused to give up the patent on Humira and keeps renewing it's patent in original form. Funny how they say a biologic drug is hard to copy to a generic drug but they have developed so many bio similar drugs for all kinds of inflammatory conditions. It is also not uncommon for Crohn's patients to develop other inflammatory conditions as time goes by. I have fibromyalgia, psoriatic arthritis in addition to the Crohns'. Please keep us posted how she is doing and know I am here to help if I can.

Hi BH,

Thanks very much for your post. Very informative. It does sound like you and my Daughter have some parallels for sure. Right now, she's starting to exhibit some Crohn's symptoms after going on a "drug holiday" post Remicade.

Humira is pending, but we're waiting to hear from her GI to get things rolling. Hopefully, not too long off, as you well know, this disease can do serious harm unchecked.

I can't believe that affordability would be of issue when we're talking about literally a life saving medication(?). Our system here in Canada works a lot differently, and is often admired, but it has plenty of faults as well. I really hope that you're able to work the affordability issue out some how. All the best to you going forward.

I do have an update on my Daughters current status. Her GI nurse called her today. Since she's been drug free for quite awhile now, it does seem like she's having some fairly severe symptoms. All typical GI Crohn's pain and some upper GI issues as well. Her nurse did say that she's seeing upper GI issues in many patients that are post Covid. The good news is, everything else in her body is feeling awesome. No more joint pain, body aches of any kind have all resolved.

The antibodies test has come back negative for antibodies to Remicade though. Bit of a dilemma there. Her nurse is now going to consult with her GI, and she has an appointment upcoming in June. She said that very likely they will stick with their plan to transition to Humira.

The other issue with that is, while she had actual Remicade, going to Humira, she will have to have a biosimilar. The nurse says they are having the same success with biosimilars, and has no issue with them.

That's about it for now. I will update as we go along. Hoping for the best.

Thanks Susie,

We actually have 6 biosimilars, but they seem to favor 3 of them. The upper GI issues are pretty severe reflux like symptoms. She did a test for H-pylori, and awaiting results. Might just be inflammation in her ilium that is causing back up issues. Lot of guesswork, we'll have to wait and see.