Going off and possibly back on Remicade in the future?

[amyrenee]

Hi Everyone,

I've been on and off these forums since my daughter, now 27, was diagnosed with ileal Crohn's. She's been on Remicade for 7 years. Since the DAY after her first infusion, she's been free of Crohn's symptoms. She is now in what they call "deep remission".

About a year ago, she started getting some skin problems in her panty line (top of inner thigh). At the beginning, there were three boils next to each other. Derm put her on Doxycline, then Bactrim. Didn't do anything. Finally we got the GI to put her on Keflex and it treated the boils, but eventually a cyst formed on the left side and we can't seem to get rid of it. We tried Keflex + Rifampin for 10 days around May and now are doing 3 weeks of Keflex + Rifampin. It seemed to keep the cyst away for about a week and then much to my chagrin, while she is on the combination, it came back.

The next thing to do is to try going off Remicade and see if it's the Remicade that's causing these skin issues. I don't want to stop Remicade because it's controlled her Crohn's symptoms so well for 7 years. She had Prometheus testing a few months ago and it showed no antibodies.

So my question is: has anyone gone off Remicade and then re-started it later on? If we try another med, like Stelara, could my daughter make antibodies to Inflximab even if she has undetectable HACAs now (at the point of going off)? (meaning: if she is antibody negative when she goes off Remicade, could she BECOME antibody-positive if she doesn't see Remicade for a year or so? My fear is if Stelara or other med didn't work on her Crohn's symptoms and we wanted to go back on Remicade, would we have a problem?

Anyone who went off Remicade (NOT due to intolerability or antibody formation but rather to side-effects such as this) and back on successfully, or unsuccessfully, I would love to hear from you.

Amy (Daughter 27, ileal Crohn's disease, diagnosed May 2005, on Remicade (monotherapy) since June 2006; no other meds except curcumin, Vitamin D, folic acid, fish oil).

 

[Sascot]

Sorry to hear you are having to make this difficult decision. I can understand why you wouldn't want her to stop the Remicade if she is doing well.
Is it worth speaking to a surgeon to see if they can remove the cyst completely instead of relying on the antibiotics?
My son had an abscess on his bottom for 4 months while they tried various different antibiotic combinations but nothing got rid of it. He eventually had it drained and all the diseased tissue taken out surgically and it has been fine ever since. I know surgeons don't like operating on people with Crohn's, but since you have given the meds time to work and they haven't - it might be worth doing. Good luck

 

[amyrenee]

Hi Sascot,

Thank you very much for your feedback and suggestion. The cyst is relatively small, and I think a cortisone shot into it may make it disappear (likely temporarily). It seems to go away and come back. I hadn't thought about surgery, but felt that it would go away if we could decolonize her system from offensive bacteria. It was biopsied at one point and only inflammatory cells were present... since it comes and goes, it's not something that I think is amenable to surgery...but it's something to keep in mind, certainly.

Thank you!

 

[McM17]

I haven't done it yet, but my doctor's plan is to get me into remission with remicade and then only use it as needed. He said that recent studies suggested that there isn't an enormous chance of developing antibodies to it even with stopping and starting. I have only had two infusions so far though, so I have no idea how well it'll work.. Good luck!

 

[kiny]

I have years ago. Not so well known I think but infliximab never used to be given more than once and then it was immediately stopped. When it was needed again it was given again. And yes going on and off it was successful for me, it didn't matter. This was not because of antibodies or anything, that was just the way they did it 10 years ago with infliximab, you went on it once, and quit.

Now they give infliximab every X weeks, but that didn't used to be how they did it.

I would like to know this too, but I don't think the TNF-alpha blockers were primarily made for crohn's disease, or at the least the idea behind them. Imuran is used to treat infections even though it can worsen infections, infections cause inflammation, when the inflammation is really bad, they need a way to stop, so they use imuran.

 

[Maya142]

My daughter was on Remicade for 3 months last year and then switched to Enbrel (she was on it for juvenile arthritis - now diagnosed as Ankylosing Spondylitis). Remicade help her only a little and her joints were very stiff and painful. Then this March we found out she had Crohns in addition to AS. She was put back on Remicade but this time with 12.5mg Methotrexate. Remicade+MTX has been miraculous for her. Her joints don't hurt anymore and her Crohns symptoms are also (slowly) vanishing (but with the addition of Entocort).

She's had 4 Remicade infusions so far and no reactions. We've never checked for antibodies though and I'm not sure if 3 months is long enough to developing antibodies.
Since your daughter does not have antibodies hopefully it will be the same for her?

Maya

 

[my little penguin]

it depends on the time between doses.

most studies say they used to dose once then wait a while ( weeks months etc..) until they needed it again
but too many people developed reactions that way.
12 -16 weeks is the max time they found where a person is less likely to have a reaction if it is restarted.

but honestly have you asked the doc about serum sickness

Serum sickness

Last reviewed: May 30, 2012.

Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain injected proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.
See also: Immune response

Causes, incidence, and risk factors

Plasma is the clear fluid portion of blood. It does not contain blood cells. However, it does contain many proteins, including antibodies, which are formed as part of the immune response to protect against infection.

Antiserum is produced from the plasma of a person or animal that has immunity against an infection or poisonous substance. Antiserum may be used to protect a person who has been exposed to a germ he or she has not been vaccinated again.

For example, you may receive a certain type of antiserum injection if you have been exposed to tetanus or rabies. This is called passive immunization. It gives you immediate, but temporary, protection while your body develops an active immune response against the toxin or germ.

During serum sickness, the immune system falsely identifies a protein in antiserum as a potentially harmful substance (antigen). The result is an immune system response that attacks the antiserum. Immune system elements and the antiserum combine to form immune complexes, which cause the inflammation and other symptoms of serum sickness.

Certain medications (such as penicillin, cefaclor, and sulfa) can cause a similar reaction. Unlike other drug allergies, which occur very soon after receiving the medication, serum sickness develops 7 - 21 days after the first exposure to a medication.

Injected proteins such as antithymocyte globulin (used to treat organ transplant rejection) and rituximab (used to treat immune disorders and cancers) can cause serum sickness reactions.

Blood products may also cause serum sickness.

Symptoms

Fever
General ill feeling
Hives
Itching
Joint pain
Rash
Swollen lymph nodes
Note: Symptoms usually do not develop until 7 - 21 days after the first dose of antiserum or exposure to the medication. However, some people may develop symptoms in 1 - 3 days if they have already been exposed to the substance.

from:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001823/

this paper covers optimizing biologics

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/

The objective of the study was to evaluate the safety and effectiveness of intermittent Remicade use. Patients who had achieved Psoriasis Area and Severity Index (PASI) 75 through continuous use of Remicade – defined as 5 mg of Remicade every eight weeks—were divided into two groups: One group continued to receive Remicade continuously, but the second group only received the drug after their PASI score worsened by 50 percent. PASI is a measure of the extent and severity of a person's psoriasis.

The study was suspended after eight of the 219 patients in the intermittent therapy study group developed serious infusion-related reactions.

Because the study stopped, researchers performed no analysis of the results regarding effectiveness. However, 80 percent of the people receiving Remicade continuously maintained a PASI 75, while only 47 percent of those in the intermittent use group maintained that score.

from:
http://www.psoriasis.org/news/stories/2013/05/21/intermittent-remicade-use-not-recommended

 

[Dragonfly72]

This is probably a stupid thought, but looking outside of having CD, could this possibly be related to her cycle? I had that happen, I kept developing cyst on my bottom and we discovered it was around my cycle and changed up my birth control and the cyst(s) went away. I hope she feels better and you find the answer, mine is just based on my own situation and I am on remicade and 6-MP, plus many other meds. Please keep us posted! Best of luck

Xo
Michele

 

[scanners20]

I have had Crohns for 10 years and I was on Remicade a long time ago and like 8 months ago I am now back on Remicade. It worked at 1st and I don't think its working again that's y I went off of it the 1st time because it stopped working for me.

 

[crohnsinct]

Well, I have read here of a few adults who have stopped Remicade for one reason or another and gone back on years later with no problem. However, I have heard many stories of people stopping then trying to go back on and it not working or reactions.

FWIW - my daughter has horrible Remicade induced Psoriasis and her GI refuses to stop the Remicade until absolutely necessary quoting the fact that we will probably not be able to return to it.

Good Luck.

 

[amyrenee]

This is probably a stupid thought, but looking outside of having CD, could this possibly be related to her cycle? I had that happen, I kept developing cyst on my bottom and we discovered it was around my cycle and changed up my birth control and the cyst(s) went away. I hope she feels better and you find the answer, mine is just based on my own situation and I am on remicade and 6-MP, plus many other meds. Please keep us posted! Best of luck

Xo
Michele

Hi Michele,
No thought is stupid. Thank you for your answer.

It could be related to her cycle, but it seems to be more omni-present than present for like 1 week of the month. But I would like to know what you changed your birth control to- we can definitely try that.

Amy

 

[amyrenee]

I have years ago. Not so well known I think but infliximab never used to be given more than once and then it was immediately stopped. When it was needed again it was given again. And yes going on and off it was successful for me, it didn't matter. This was not because of antibodies or anything, that was just the way they did it 10 years ago with infliximab, you went on it once, and quit.

Now they give infliximab every X weeks, but that didn't used to be how they did it.

I would like to know this too, but I don't think the TNF-alpha blockers were primarily made for crohn's disease, or at the least the idea behind them. Imuran is used to treat infections even though it can worsen infections, infections cause inflammation, when the inflammation is really bad, they need a way to stop, so they use imuran.

Thank you for your reply!

As far as I understand, TNF-alpha antagonists were developed first for RA, and then were found to be efficacious for Crohn's, then UC - also for other autoimmune diseases such as psoriasis. All these diseases have upregulated inflammation and damping down the TNF-alpha production works. Imuran is an old drug that works for the prevention of organ transplant rejection and in lower doses, helps to damp down inflammation. My daughter could not take Imuran, it caused toxic levels of the pro-drug.

Amy

 

[amyrenee]

I haven't done it yet, but my doctor's plan is to get me into remission with remicade and then only use it as needed. He said that recent studies suggested that there isn't an enormous chance of developing antibodies to it even with stopping and starting. I have only had two infusions so far though, so I have no idea how well it'll work.. Good luck!

Please be careful! I would ask another doctor's opinion. It is not meant to be used episodically. As others point out in this thread, there is an increased likelihood of making antibodies and having an infusion reaction.

 

[amyrenee]

it depends on the time between doses.

most studies say they used to dose once then wait a while ( weeks months etc..) until they needed it again
but too many people developed reactions that way.
12 -16 weeks is the max time they found where a person is less likely to have a reaction if it is restarted.

but honestly have you asked the doc about serum sickness


from:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001823/

this paper covers optimizing biologics

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/




from:
http://www.psoriasis.org/news/stories/2013/05/21/intermittent-remicade-use-not-recommended[/QUOTE

Hi, Thank you for your post. I don't really understand what the serum sickness argument is. I read the second paper you provided a link to on optimizing treatment and I can't find anything in there about going off and on later and the development of antibodies. Please point it out if I missed it.

Amy

 

[Tesscorm]

The article below may be of interest to you, however, it is a bit dated (2006) and the study included only 14 patients.

Summary
Aim
To appraise the tolerance and efficacy of an induction of tolerance protocol to infliximab permitting the re-administration of the drug to patients with Crohn's disease having had infusion reactions requiring suspension of treatment.

Methods
Fourteen patients were included in the induction of tolerance protocol. Each infusion of infliximab (5 mg/kg) was divided into 11 escalating 15 min increments over a 3-h time period. The induction of tolerance procedure was repeated for subsequent infusions.

Results
Ten patients (71.4%) received all the three infusions for the induction treatment. Nine (64.3%) had a significant response and six (48.8%) still benefited from infliximab infusions. Seven patients (50%) achieved a complete remission, after a mean of 2.5 (two to three) infusions. Four patients (28.6%) had no response and the protocol was stopped. Three patients (21.4%) experienced mild immediate hypersensitivity reactions, which were controlled, two patients (14.2%) experienced severe immediate hypersensitivity reactions, leading to interruption of the treatment and one patient developed a delayed hypersensitivity reaction.

Conclusion
Our induction of tolerance protocol allows some patients who have experienced severe or repetitive infusion reactions to infliximab to be safely retreated with the drug in a hospitalized setting, with a clinical response achieved in a majority of these patients.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.03026.x/full

 

[Tesscorm]

Hi amyrenee,

Just curious what your daughter's GI is recommending?? Pretty much all I've learned is that you will run the risk of developing antibodies once halting remicade but I'd love to find a more extensive study that actually shows the occurrance of developing ATIs after discontinuation and/or the success of reintroducing remicade.

We recently found that my son does not have immunity to mumps (although he did receive this two MMR vaccines as a child). I've had one ID doctor suggest he repeat the vaccine to protect him from mumps but she did have concerns re the remicade treatment while having the vaccine and questioned the possibility of halting remicade for a short while. I have an apptmt with my son's GI in August but, I'm fairly confident his opinion is NO live vaccines while on remicade. :ywow:

My son also recently had the prometheus test which showed no antibodies as yet.

 

[amyrenee]

Hi Tesscorm,

Thank you for your post. Long story about the GI's recommendation: she has a local GI and he has not seen her yet about this issue specifically (we should make an appointment though). I have been corresponding with a Dr that we saw at Mayo-Rochester (who has since moved to CA) by email, and he wants her to come out there. I would like to be able to figure this out without having to go to CA to see him but I think we may have to go at some point this year. He has said that we could switch to Stelara from Remicade, but I don't know if we're willing to consider this, because what if (a) Stelara doesn't work or (b) the skin problem isn't related to Remicade - then we'd need to go back on Remicade and perhaps couldn't.... not something I want to risk at this point, but skin problem has been hanging on for a year and we need to get RID of it!

I think the Dr in CA will know the answers, I was hoping he would directly answer my questions by email but so far he hasn't.

As far as live vaccines are concerned, my understanding is no live vaccines while on biologics. I don't know if I'd go off just to receive mumps vaccination - not sure how long Remicade stays in blood but studies of newborns show 6 months... that would be enough time to develop an immunity to Remicade. BUT my basic question that I can't find an answer to is IF you had a prometheus test and it shows no antibodies, can you DEVELOP antibodies if you don't see Remicade for a time (or is it only people who have some or lots of antibodies who develop the infusion reaction?) if you don't have any to start with...

Thanks!

 

[Tesscorm]

I will be asking this question at my son's next GI apptmt (end of Aug) and will certainly share his answer here. But, as I said, I am fairly certain his stance will be no live vaccine while on remicade and the risk of building ATIs while stopping remicade is greater than the risk of contracting mumps...

You may also want to ask your question on the remicade subforum...

I hope you're able to find a solution for your daughter without having to make a long trek to California. :ghug:

 

[crohnsinct]

My daughter has no antibodies and her doc still says no coming off unless absolutely necessary because of the risk of trouble the second time around so I am guessing yes they can build antibodies even if they didn't have any at the time they came off.

 

[amyrenee]

Thank you, Crohnsinct - your answer is very helpful.

 

[my little penguin]

DS had no antibodies on the Prometheus test.
He did have skin issues ( rashes , blisters, skin peeling, dx with rosecea, scalp rashes ) saw multiple dermo while on remicade .
From oct 2012 to mar 2013
The rashes- skin continued to get worse.
Promethiius test done late Jan.
Infusion reaction Feb
second infusion reaction March while on iv solumedrol , plus Benadryl.
We were told he could no longer have remicade.

His dermo stated she has seen many with skin problems from remicade and not a good reason to stop but since DS's reaction kept getting worse and he ended up with prolonged tongue tingling and breathing involvement from his last infusion while on steriods - well that meant no more infusions regardless of whether his blood showed one type of antibody.

His skin did completely clear within 8 weeks of stopping remicade.

 

[amyrenee]

Thank you, my little penguin - that is very helpful. Anyone else who has information like this - would be VERY much appreciated.

 

[kiny]

They have stopped doing antibody tests for remicade here now. Reason being they found it somewhat unreliable, and the tests are extremely expensive they said if they need to be done accurately. They said they preferred spending money on other aspects like improving dosage and more accurate immune testsing than on antibody tests for remicade. I was suprised by this, also by the cost, I sort of know the cost of most lab tests, but this is very expensive.

 

[crohnsinct]

My daughter's skin reaction is just very aggressive, ugly, itchy psoriasis not a painful cyst like your daughter has and her GI and Derm both agree it is not enough of a reason to come off Remicade.

But....her psoriasis is in her privates as well and lets just say the itching does drive her up a wall sometimes so I guess if when she returns to school it interferes with her concentration maybe then.....