Humira with Azathioprine
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Both my daugthers have been on combined therapy for years. My older daughter is doing well on Humira and MTX (15 mg). However, whenever she tries to wean MTX (and she has tried several times), she flares. We're hoping that some time in the future, she will be able to reduce it or even get off it altogether.
My younger daughter is not in remission yet, so we're not taking her off anything! She's currently on Imuran + biologic + Entocort + Allopurinol.
But her GI prefers to keep kids on combined therapy. However, she says if you have been in very stable remission for over a year or two, then she would at least reduce and eventually remove the immunomodulator.
Every doctor seems to have a different protocol for some reason.
My younger daughter is not in remission yet, so we're not taking her off anything! She's currently on Imuran + biologic + Entocort + Allopurinol.
But her GI prefers to keep kids on combined therapy. However, she says if you have been in very stable remission for over a year or two, then she would at least reduce and eventually remove the immunomodulator.
Every doctor seems to have a different protocol for some reason.
DustyKat
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Thanks Maya. 
Last year when Matt commenced Humira, along with his other meds, the GI was of the opinion that he would keep him on Imuran for about 2 years. At his most recent visit it was raised again about the Imuran and the GI spoke about some recent studies that point to remaining on an immunomodulator indefinitely. The studies of which he spoke seemed to indicate that maintaining a lose dose of the immunomodulator produced better results with maintaining remission and staving off antibody build up than dropping it all together. IIRC he also stated that there was no difference between say a ‘therapeutic dose’ and a ‘maintenance dose’ in producing the more positive results. They are my phrases not his. I can’t find the studies so I assume this is information he has picked up at conferences or on GI access only sites. I don’t think they have reached the point with the research of recommending just what the low/maintenance dose would be.
I was curious if anyone else’s GI had had similar discussions regarding this more recent research.
Last year when Matt commenced Humira, along with his other meds, the GI was of the opinion that he would keep him on Imuran for about 2 years. At his most recent visit it was raised again about the Imuran and the GI spoke about some recent studies that point to remaining on an immunomodulator indefinitely. The studies of which he spoke seemed to indicate that maintaining a lose dose of the immunomodulator produced better results with maintaining remission and staving off antibody build up than dropping it all together. IIRC he also stated that there was no difference between say a ‘therapeutic dose’ and a ‘maintenance dose’ in producing the more positive results. They are my phrases not his. I can’t find the studies so I assume this is information he has picked up at conferences or on GI access only sites. I don’t think they have reached the point with the research of recommending just what the low/maintenance dose would be.
I was curious if anyone else’s GI had had similar discussions regarding this more recent research.
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No experience with Imuran here, but my daughter was on Remicade + methotrexate when she started treatment. After just over a year of combined treatment, our GI recommended stopping the MTX last May. We were conflicted about the decision but decided to try dropping it, and so far, E is doing well on just Remicade.
Our doctor's reasoning was that kids often need very strong treatments to get them into remission, but that she then wants to find the minimum necessary treatment required to maintain that remission, to minimize the lifetime exposure to powerful immunosuppressants. She didn't think that we'd be increasing the risk of antibody formation by stopping the MTX after a year, but that's the part that I think isn't yet well-understood. I went through the research in May and didn't come across anything like the studies that your doctor described, so--as you said--it may not be published yet.
Our doctor's reasoning was that kids often need very strong treatments to get them into remission, but that she then wants to find the minimum necessary treatment required to maintain that remission, to minimize the lifetime exposure to powerful immunosuppressants. She didn't think that we'd be increasing the risk of antibody formation by stopping the MTX after a year, but that's the part that I think isn't yet well-understood. I went through the research in May and didn't come across anything like the studies that your doctor described, so--as you said--it may not be published yet.
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Personally, my kiddos have been on so many biologics, I would want them on immunomodulators no matter what! We can't really risk the formation of antibodies, because they don't have a whole lot of options left.
My younger daughter's rheumatologist said as much -- she said that if hypothetically M didn't need Imuran for Crohn's, she would still want her on a low dose for antibodies.
I asked what a low dose was and she said at least 50 mg (M was on 100 mg at the time).
My younger daughter's rheumatologist said as much -- she said that if hypothetically M didn't need Imuran for Crohn's, she would still want her on a low dose for antibodies.
I asked what a low dose was and she said at least 50 mg (M was on 100 mg at the time).
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Ds is on humira and Mtx and has been for 3 years
The Rheumo added Mtx to humira after a year due to JSpA
Since humira only wasn't enough
Still in the process of increasing the dosage for both drugs ....
Raised Mtx to 17.5 mg
And humira to every 5 days
All to cover his joints and skin
The Rheumo added Mtx to humira after a year due to JSpA
Since humira only wasn't enough
Still in the process of increasing the dosage for both drugs ....
Raised Mtx to 17.5 mg
And humira to every 5 days
All to cover his joints and skin
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Initially, C's GI mentioned when starting humira of things went well he'd remove mtx after maybe a year.
But at a later appt he mentioned he might lower the mtx (C is on the highest dose) but would not remove. This wasn't realistic though since the mtx at that dose is needed for his joint disease.
But at a later appt he mentioned he might lower the mtx (C is on the highest dose) but would not remove. This wasn't realistic though since the mtx at that dose is needed for his joint disease.
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Yeah, that's what keeps me up at night--whether we're risking antibody formation. We still have other biologics left to try, but I don't think E would do well with the Humira shots, so I really don't want to lose Remicade right now...
These treatment decisions are hard! I wish there was more research on combo therapy. For what it's worth, our GI thinks that the evidence is stronger for using azathioprine for combo therapy with biologics, as opposed to mtx, although the potential risks also seem to be greater. We actually asked her if we should consider putting E on Imuran when we took her off mtx, but she didn't think it was worth it.
Of course none of this matters if you need the immunomodulator for therapeutic purposes. MTX was definitely helping E with her Crohn's symptoms last year, so we're watching things closely right now.
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pdx, there is supposed to be a new formulation of Humira next year. People who are in Europe (where it has already been released) say it is MUCH better -- much less painful.
Plus, your kids tend to surprise you. My girls complained, but got used to it very quickly. Even my younger one who tends to be very anxious about things. She figured out it quickly she needed it to stay well, so she never fought. We never even had tears -- not even once!
It did help that we gave them lots of dessert after the shot.
Plus, your kids tend to surprise you. My girls complained, but got used to it very quickly. Even my younger one who tends to be very anxious about things. She figured out it quickly she needed it to stay well, so she never fought. We never even had tears -- not even once!
It did help that we gave them lots of dessert after the shot
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I'm going to tag Sascot since her son's GI recently wanted to remove meds altogether due to potential risks. I'm certainly not suggesting/encouraging this, just think she may have a different perspective from her GI.
Also, my aunt's treatment was to move from remi/imuran/steroids combo to imuran/steroids only. She was much older than Matt (in her late 50s/early 60s), so this may have played into her GI's decision. Also, she was one of the first patients on remi (in Europe or Portugal), so there may have been less awareness of the risk of antibody formation when discontinuing remi. In any case, her experience was - she had a very, very tough time reaching remission and struggled for, at least, a year or two of severe symptoms (pain, bleeding, malnutrition, etc.). Finally, the combo of imuran, remicade and steroids took her to remission. After a year or two of remission, her GI was concerned about the remi risks and discontinued the remicade. Since then, approx. 20 years, she has been on imuran and a very low dose of steroids (I believe maybe as low as 1mg). This combo has kept her in remission relatively well. I say 'relatively' because she does watch her diet (although does cheat at times) and, if she begins to feel any twinge of symptoms/relapse, she immediately ups her dose of steroids for a week or so. Over the last ~20 years, this has kept her in remission. She has had no other ill effects - no increased occurrence of infections, no unusual signs of osteoporosis (she's mid 70s now, so if she has some osteo now, wouldn't be unheard of for a woman of her age, kwim...)
Again, at Matt's age, not suggesting a lifetime of steroid use is the answer, just sharing what I know of my aunt's treatment.
Also, my aunt's treatment was to move from remi/imuran/steroids combo to imuran/steroids only. She was much older than Matt (in her late 50s/early 60s), so this may have played into her GI's decision. Also, she was one of the first patients on remi (in Europe or Portugal), so there may have been less awareness of the risk of antibody formation when discontinuing remi. In any case, her experience was - she had a very, very tough time reaching remission and struggled for, at least, a year or two of severe symptoms (pain, bleeding, malnutrition, etc.). Finally, the combo of imuran, remicade and steroids took her to remission. After a year or two of remission, her GI was concerned about the remi risks and discontinued the remicade. Since then, approx. 20 years, she has been on imuran and a very low dose of steroids (I believe maybe as low as 1mg). This combo has kept her in remission relatively well. I say 'relatively' because she does watch her diet (although does cheat at times) and, if she begins to feel any twinge of symptoms/relapse, she immediately ups her dose of steroids for a week or so. Over the last ~20 years, this has kept her in remission. She has had no other ill effects - no increased occurrence of infections, no unusual signs of osteoporosis (she's mid 70s now, so if she has some osteo now, wouldn't be unheard of for a woman of her age, kwim...)
Again, at Matt's age, not suggesting a lifetime of steroid use is the answer, just sharing what I know of my aunt's treatment.
DustyKat
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Thanks for the input guys. It is very much appreciated. It’s good to know what other docs are doing and what you all think, helps immensely with the thought processes!
Yeah Maya, I was thinking it may be something like 50mg too.
The GI does discuss the risks of Imuran with Matt at each visit and then goes on to explain to him the reasons why he is continuing with the therapy.
My thinking has changed on how Crohn’s has presented with my two. I used to think they were two peas in a pod and their disease was almost identical in every aspect but for a while now I haven’t thought this is the case. Location and outcome yes but not phenotype. I think the only reason Sarah had such a severe presentation at diagnosis was because of the length of her undiagnosed period, the unchecked disease was left to go rampant for far too long.
Matt on the other hand, I think he had a far more aggressive phenotype from the outset. The GI is also working off the premise that his Crohn’s is aggressive in nature, hence his reluctance to drop any meds. Having said that he is constantly monitoring and assessing to ensure that he is on the least amount of drug necessary to get the job done which is why I think he mentioned this newer research.
Yeah Maya, I was thinking it may be something like 50mg too.
The GI does discuss the risks of Imuran with Matt at each visit and then goes on to explain to him the reasons why he is continuing with the therapy.
My thinking has changed on how Crohn’s has presented with my two. I used to think they were two peas in a pod and their disease was almost identical in every aspect but for a while now I haven’t thought this is the case. Location and outcome yes but not phenotype. I think the only reason Sarah had such a severe presentation at diagnosis was because of the length of her undiagnosed period, the unchecked disease was left to go rampant for far too long.
Matt on the other hand, I think he had a far more aggressive phenotype from the outset. The GI is also working off the premise that his Crohn’s is aggressive in nature, hence his reluctance to drop any meds. Having said that he is constantly monitoring and assessing to ensure that he is on the least amount of drug necessary to get the job done which is why I think he mentioned this newer research.
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Dusty,
It is a very good question. How old is he now? Doesn't the risks from Imuran drop when kids get older? That was what I had understood from the studies.
It is a very good question. How old is he now? Doesn't the risks from Imuran drop when kids get older? That was what I had understood from the studies.
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It sounds like indefinitely for Grace.
Let's see she was on
Mtx alone
Next Humira plus Mtx
Next Remicade plus Mtx
Next Remicade plus Mtx and sulfasalazine
Next Remicade plus Mtx plus Imuran
Now Remicade plus Imuran
But I should ask if there's a plan in place. Lol I've just never thought we get there.
Let's see she was on
Mtx alone
Next Humira plus Mtx
Next Remicade plus Mtx
Next Remicade plus Mtx and sulfasalazine
Next Remicade plus Mtx plus Imuran
Now Remicade plus Imuran
But I should ask if there's a plan in place. Lol I've just never thought we get there.
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Really thought I had replied already, sorry. I'm not really sure what the specific risks are for staying long term on the mercaptopurine - they just said the risks increase the longer you're on it. I had wrongly assumed they went over every reason with Andrew (they take him in on his own now, which I don't like!), so will be asking lots of questions at the next appt.
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So I looked into it a little more and it seems that the risks don't decrease with age as I thought our doctor had said several years back and that the longer they are on it the greater the risk. It sounds like it might be time to take him off it.
http://www.med.upenn.edu/gastro/documents/JosieNi12.15.14pdf.pdf
http://www.med.upenn.edu/gastro/documents/JosieNi12.15.14pdf.pdf
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Seems like these drugs put the kids at increased risk of skin cancer as well which I don't remember the doctors ever mentioning,
http://www.ncbi.nlm.nih.gov/pubmed/23216663
http://www.ncbi.nlm.nih.gov/pubmed/23216663
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Kids with Ibd or arthritis etc are at a greater risk of skin cancer even without meds
The inflammatory process is what puts them at risk
Meds like 6-mp and Aza increase that risk but those studies are very recent with the past few years
This is why regular dermatologist visits are part of the Ibd team in addition to opthamology
The inflammatory process is what puts them at risk
Meds like 6-mp and Aza increase that risk but those studies are very recent with the past few years
This is why regular dermatologist visits are part of the Ibd team in addition to opthamology
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Yes, definitely skin cancer. My daughter had a suspicious mole and they got us into dermatology surgery within days (it was not cancerous but they still removed it).
The risk does increase over time with Imuran and 6MP. Our GI thinks MTX is safer, but some kiddos do not tolerate MTX, so there is not much you can do.
The risk does increase over time with Imuran and 6MP. Our GI thinks MTX is safer, but some kiddos do not tolerate MTX, so there is not much you can do.
DustyKat
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I knew about the increased risk of skin cancer, particularly noteworthy since we are of Irish/Scottish descent living in Australia and 1000 metres above sea level, does it get any worse! :eek2::lol:
I have read and read over the years until it would be less painful to poke my eyes out with a pen about the risks of combined therapy or Imuran/6MP alone as I’m sure you all have too. :ybatty: There is no way in my mind that this doesn’t come down to a case by case basis simply due to the fact that we not only have our own beliefs/knowledge/fears but that also our children have their own personal journeys. Sure, there are many cases that VERY similar but not the exact same.
I would dearly love that Matt was on no meds or monotherapy only but I am torn between the risks of the side effects of the drugs and the side effects of the disease, again, no doubt as we all are. I came across a slide show presentation that I had downloaded lord only knows when, lol, but I can’t get the link up. It was a bit a pros and cons to stopping or continuing medications when someone is in remission. It goes without saying that there will be those in the profession that believe that withdrawing treatment is a viable option and those that are dead against it. This was the conclusion that this Professor came to and even then it isn’t set in concrete:
Certainly food for thought but unfortunately not a group to which we are a member. Then again, would I take the leap if we were?? :yfaint:
I have read and read over the years until it would be less painful to poke my eyes out with a pen about the risks of combined therapy or Imuran/6MP alone as I’m sure you all have too. :ybatty: There is no way in my mind that this doesn’t come down to a case by case basis simply due to the fact that we not only have our own beliefs/knowledge/fears but that also our children have their own personal journeys. Sure, there are many cases that VERY similar but not the exact same.
I would dearly love that Matt was on no meds or monotherapy only but I am torn between the risks of the side effects of the drugs and the side effects of the disease, again, no doubt as we all are. I came across a slide show presentation that I had downloaded lord only knows when, lol, but I can’t get the link up. It was a bit a pros and cons to stopping or continuing medications when someone is in remission. It goes without saying that there will be those in the profession that believe that withdrawing treatment is a viable option and those that are dead against it. This was the conclusion that this Professor came to and even then it isn’t set in concrete:
Certainly food for thought but unfortunately not a group to which we are a member. Then again, would I take the leap if we were?? :yfaint:
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My son (who is now 22) has been on Humira for 4 years this fall, he started out on azathioprine, LDN and Humira, the aza was tapered down a year after he started and for the last 3 years has stayed in remission while on Humira and LDN.
During his last GI appointment the Dr. was telling him about new studies that show that Humira can be stopped and started again, and that the body does not build up antibodies to it as it does with Remicade. Although he said he wouldn't be taking my son off of it anytime soon, it might be an option in the future, when he's done school and established in a career. (Less stress in his life). Not sure how I feel about that as he is feeling so good now - but he is 22, and making his own decisions now!
During his last GI appointment the Dr. was telling him about new studies that show that Humira can be stopped and started again, and that the body does not build up antibodies to it as it does with Remicade. Although he said he wouldn't be taking my son off of it anytime soon, it might be an option in the future, when he's done school and established in a career. (Less stress in his life). Not sure how I feel about that as he is feeling so good now - but he is 22, and making his own decisions now!
Just want to chime in.. i've been on 6mp for about 18 years and i'm 46. I'm having a lot of skin issues to the point where I am heading to the GI next week to discuss switching meds. I'm concerned about skin cancer because the long term immunosuppressive therapy with 6MP has wrecked my skin! i'm at the dermatologist all the time and keep getting things burned off and retested. I have warts like crazy, premature skin aging, lots of brown spots. Very scary.
