Remicade not effective anymore?

[Madhu]

Hi all,

I desperately need help. My husband has crohn's. He was diagnosed 3 yrs ago when we were in NJ. He had ups and downs these 3 yrs starting with a horrible flare, then going into remission, then coming out of it, then kinda had it under control. His Dr there was amazing. We had to move to TX this year. We thought the warmer climate would help, but he has gotten worse!

He is constantly suffering after coming here. We found a new Dr here and only saw him twice so far. So I can't judge yet if he is really good or not. These are his issues now -
1. multiple times diarrhea a day.
2. Bowel spasm (new Dr gave a medicine, it works)
3. Gas pains
4. Weight loss (he lost 10 lbs in a month). He is 5'6" and now weighs 109 lbs.

This is what the new Dr did.
1. Did MRI (reports normal. No active crohn's)
2. Stool test to check for infection (normal)
3. Though stool test was normal, he said that sometimes those tests can be inconclusive and gave him an antibiotic (Alinia 500 mg). Instead of helping, that antibiotic increased his diarrhea but he took it with Imodium and finished the course

Things seemed to stabilize a bit for 3-4 days. Now he is again having multiple BMs a day and is exhausted. I don't know where else to go. We sent a msg to his Dr and he said that since MRI and all other labs were clear, he would like to do a colonoscopy to check for active crohn's. If it showed active crohn's and since he is showing symptoms on Remicade, he said he would switch him to a different med.

Now this is being a huge red flag for us because Remicade is the one that saved his life when he was diagnosed in 2015. I do understand that it can stop working, but without doing the Prometheus test to check levels or antibodies, how can we come to a conclusion that it's not working anymore? The last time he had his levels checked was in Sep 2017 and it was fine with no antibodies. Now, my husband says he wants to get a second opinion and I agree. I just want to feel like we are on the right track here.

Sorry for the long post. Any reassurances would help.

Edited to add - The only difference we have with Remicade now is he is having home infusions vs going to an infusion centre. If that makes the difference, we are willing to get his infusions at a centre again.

 

[Scipio]

Now this is being a huge red flag for us because Remicade is the one that saved his life when he was diagnosed in 2015. I do understand that it can stop working, but without doing the Prometheus test to check levels or antibodies, how can we come to a conclusion that it's not working anymore? The last time he had his levels checked was in Sep 2017 and it was fine with no antibodies. Now, my husband says he wants to get a second opinion and I agree. I just want to feel like we are on the right track here.

If the doc sees active Crohn's via colonoscopy that's pretty conclusive evidence that Remicade has stopped working. What additional testing can do is give you some idea of why it has stopped. The antibody levels (if present) might suggest whether to try a bigger dose of Remicade first or to switch to another biologic right away.

If it turns out that the verdict is to switch, the good news is that there are several good options out there. The first would probably be Humira, since it is most like Remicade but is unlikely to also be blocked by antibodies to Remicade. (Like any biologic, Humira may induce antibodies of its own. But that's another question.) After Humira there is Simponi and Cimzia available, and the non-anti-TNFs of Entyvio or Stelara perhaps after that.

Many people have found good success with one of these other biologics after their initial drug stopped working. It's a very common problem in IBD.

 

[Madhu]

If the doc sees active Crohn's via colonoscopy that's pretty conclusive evidence that Remicade has stopped working. What additional testing can do is give you some idea of why it has stopped. The antibody levels (if present) might suggest whether to try a bigger dose of Remicade first or to switch to another biologic right away.

When he had a minor flare a year ago, his Dr did a colonoscopy and it showed mild inflammation in the colon but his small intestine was unaffected. So, the Dr adjusted his Remicade schedule from 8 weeks to 4 weeks saying that his body probably burns the medicine faster and needs more. And it worked. We were able to get that flare under control pretty quickly. Couldn't that be the case now?

With the new Dr, we feel like we have to keep asking him something or the other. Everytime he says he is suffering, the Dr says all your labs are clear, so give it some time, eat a low carb diet and take a probiotic. But it doesn't get better with that. I sent a subtle but strong msg to him yesterday asking if we are missing something and if there is anything else we can do about this. And then he says ok let's do a colonoscopy!

 

[Scipio]

Some docs are very aggressive with the medication and others are medication minimalists and many are somewhere in the middle.. Your new doc may belong to the minimalist school of thought. You and your husband may need to regularly push to get him what he needs.

 

[my little penguin]

Symptoms your describing
It’s highly likely remicade stopped working
Ds has similar with humira
We kept increasing dosing etc...
Till he maxed out
At that point we had to stop and switch

It’s tough switching
But better than taking all the risk associated with remicade but none of the benefits (actually stoping the inflammation)

Good luck

 

[Madhu]

Thank you. We are planning to get a second opinion and see how it goes. If it has stopped working, I guess we just have to accept that.

 

[TxGrizzlyBear]

We are planning to get a second opinion and see how it goes.

Madhu, first, welcome to Texas. Not sure where you are, but I am just north of Houston.

It definitely sounds like the doc is either not up to speed on CD or is just plain incompetent. Trust your instincts and find a different doctor.

I happen to have a good rapport with my primary, both of us being former military, and I found that his recommendations/referrals have been mostly reliable. If you have established a new primary care doc, maybe (s)he can refer you to a good GI.

JB

 

[Madhu]

Madhu, first, welcome to Texas. Not sure where you are, but I am just north of Houston.

It definitely sounds like the doc is either not up to speed on CD or is just plain incompetent. Trust your instincts and find a different doctor.

I happen to have a good rapport with my primary, both of us being former military, and I found that his recommendations/referrals have been mostly reliable. If you have established a new primary care doc, maybe (s)he can refer you to a good GI.

JB

Thanks JB. We are in San Antonio. We are meeting with another GI tomorrow for a second opinion. Will update on how that goes.

 

[Madhu]

Update - we met a new Dr and really liked her. She checked all his reports right from diagnosis and spoke very thorough. We felt like she really knew her stuff. She agreed with us that we shouldn't give up on remicade that easily but she is also concerned that it might be losing its effect.

So she is doing a colonoscopy and endoscopy next week. Prometheus testing before the next infusion. Comprehensive bloodwork and stool tests. Chest xray since he had latent tb prior to starting remicade.

She spoke about entyvio and stelara as alternatives if we find that remicade is done. Or she also suggested methotrexate along with 4 week remicade infusions. Is there anything we have to keep in mind? I haven't done my research about the other meds or methotrexate yet. Any side effects commonly expected?

 

[my little penguin]

Entivyio has been shown by pediatric GI to be more effective with ulcerative colitis
Vs Crohns
They tend to use Stelara more for pediatric Crohns out of the two

Both take a very long time to become effective
Stelara up to 6 months
Entivyio up to a year .

Ds has been on Stelara since last aug
It has a very low infection risk compared to others

He also takes methotrexate woth it .

No real side effects

Good luck

 

[lively_child]

Update - we met a new Dr and really liked her.
She spoke about entyvio and stelara as alternatives if we find that remicade is done. Or she also suggested methotrexate along with 4 week remicade infusions. Is there anything we have to keep in mind? I haven't done my research about the other meds or methotrexate yet. Any side effects commonly expected?

Madhu
I am glad you got a second opinion. Finding a Dr you trust is very important. Just wanted to fill you in on my son's experience. He started Remicade last year in August. He did awesome on it....for a few months. By October, the Remicade only lasted about 2 weeks and symptoms would return. I was ready to try something else but Dr encouraged us to up the dose and try again. It worked!!! for a few months anyway. By February, he was back to only making it 2 weeks. Dr then wanted to add methotrexate. She explained it to me that what was happening with my son was his body wasn't building antibodies but was "eating" through the medicine too fast. She said the methotrexate might keep his body from reacting to the remicade like that. Although we were hesitant to add another medicine, we agreed (mainly because of the trust we have in his Dr). And again...it Worked!!! It did take about 6 weeks to fully kick in, but my son has felt better than he has in a long while. Keep in mind, he has only been doing this for 3 months, so I may be celebrating a little soon, but that is the longest at a time that he has felt well. He even gained 10 pounds since March. My son does 25 mg injections a week and hasn't had any major side effects other than some tiredness the day after the injection.
I don't know if this helps at all, but wanted to share our experience with Remicade.

Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

 

[Madhu]

Madhu
I am glad you got a second opinion. Finding a Dr you trust is very important. Just wanted to fill you in on my son's experience. He started Remicade last year in August. He did awesome on it....for a few months. By October, the Remicade only lasted about 2 weeks and symptoms would return. I was ready to try something else but Dr encouraged us to up the dose and try again. It worked!!! for a few months anyway. By February, he was back to only making it 2 weeks. Dr then wanted to add methotrexate. She explained it to me that what was happening with my son was his body wasn't building antibodies but was "eating" through the medicine too fast. She said the methotrexate might keep his body from reacting to the remicade like that. Although we were hesitant to add another medicine, we agreed (mainly because of the trust we have in his Dr). And again...it Worked!!! It did take about 6 weeks to fully kick in, but my son has felt better than he has in a long while. Keep in mind, he has only been doing this for 3 months, so I may be celebrating a little soon, but that is the longest at a time that he has felt well. He even gained 10 pounds since March. My son does 25 mg injections a week and hasn't had any major side effects other than some tiredness the day after the injection.
I don't know if this helps at all, but wanted to share our experience with Remicade.

Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

Thank you! That certainly helps. Did his Dr say how long he has to be on Methotrexate? Or, is it as long as he is taking Remicade? I have just started doing my research and dh will take atleast one Remicade infusion next month, because they will be checking levels during that time.

Glad your son is starting to do better. Hope this combination works out for him

 

[lively_child]

Did his Dr say how long he has to be on Methotrexate? Or, is it as long as he is taking Remicade?

He will be on it as long as he is on Remicade. If he continues to do well, we may be able to space out the remicade infusions or maybe lower the methotrexate dosage.

I am no doctor, but as she explained it, the methotrexate blocks the part of your immune system that tries to eliminate Remicade or blocks the part of the immune system that makes antibodies against Remicade. It did seem like my son's system was basically disposing of the Remicade long before the month was up. He was tested and had no anitbodies but his medicine levels would just be too low to be threaputic. Hope this helps And good luck to you.


Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

 

[Madhu]

Hi everyone, wanted to give a quick update - dh had scopes done today. His Dr was very happy with the result. Very mild inflammation in the large intestine and the small intestine was completely fine. No evidence of fistula. She is still going to check remicade levels but she thinks it's continuing to work. So she wants him to be on a 4 week schedule and add methotrexate for a year. She will decide mtx dosage after more results come by.

One more thing - she was concerned about his protein serum levels in blood. She said remicade increases it but she had never seen it this high in anyone. So she ordered a breakdown and it all points towards remicade as the reason but she still wants him to see a haemotologist to rule out lymphoma, but she doesn't think we should worry. So there's that.

Can anyone give me more info about methotrexate? Is it in injection form? He took 6-mp earlier for 6 months and we knew it came with some serious risks. Does methotrexate have any of that kind?

 

[lively_child]

Madhu,
I do know that my son's proteins are usually elevated but apparently it's a level the doctors are not concerned about with him.

My son does 25 mg injections once a week. As far as side effects and risks, I am still learning about that. He has no side effects so far except slightly tired. The doctor did say it took 3 months to be completely effective so soon we will back the methotrexate to 15 mg to try and find the lowest effective dose.

It can affect your liver so they told him drinking alcohol was a big NO. And of course that requires monthly labwork to moniter.

They said it can cause birth defects or something, so he is supposed to not have sex LOL...just kidding. The doctor said if he was planning on having children, they needed to know and he would get off the methotrexate for a few months before trying.

It is also an immune suppressant so he is at increased risk of infection but that is also with Remicade and we haven't noticed an increase in sickness.

Hope all goes well for you guys. Keep us updated on progress.

Mom of I (17) diagnosed w/Crohns at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

 

[Madhu]

Thanks lively_child

We don't know what dosage he is going to be on yet. Dr said she will decide after seeing the remicade levels. He used to be on 6 mp a couple of yrs ago, he had hair loss and back acne during that period. Hopefully this is different.

Thank you so much for your input. I will update when we know more.

 

[ravii_39]

Hi Madhu,

How is he doing now. I also have a similar story and Remicade stopped working So my doctor is doubling the dose and if that also doesn't work he want to me to switch to Entyvio or Stelara. Are you still on Remicade?