Advice on a treatment for Crohn's disease

[KHCD5]

I have Crohn's disease and was diagnosed when I was 12 years old, I'm now 27. In the last 5 years I have had all sorts of set backs, Including a bowel rupture, colostomy, colostomy reversal, and 3 bowel obstruction surgeries.

I have been on almost every drug there is for Crohn's disease. I was most successful for the longest time on 25-50mg Azathioprine and 100mg Allopurinol. Everything was "okay" until I ruptured my intestine. After all the surgeries I was doing better but still suffered from bad fatigue, and slew of other symptoms related to the drugs or disease.

The doctor (who was assigned to me by the surgeon, not my GI doctor I had been seeing since 2007) took me off the Aza/allopurinol and put me on Remicade saying it was "safer" and had fewer side effects. Out of desperation I went along with her decision. I didn't tolerate the medication at all so I went off Remicade but in the process had an awful flare that prednisone would not control. I returned back to my previous GI doctor and he suggested I get on Humira otherwise I would require surgery. It took about 3 months on Humira before the bleeding decreased in my stool. Humira worked but did not put me into remission. Fast forward to the first week in December 2014 I decided to take a trip to the Mayo Clinic in Rochester, MN for a second opinion. I was fed up with my care and my current GI doctor was satisfied with my current condition. Mayo Clinic's findings were:

A colonoscopy showed ulceration at the ileocecal valve and erythema, friability, and scarring in the ascending colon. Scarring was also seen in the sigmoid colon. Biopsies of the ileocecal valve showed mild active chronic ileitis and normal colonic mucosa, right colonic biopsies showed focal mild active chronic colitis, and left colon biopsies showed focal inactive chronic colitis.

My CRP level is at 34.3 mg/L which is 4 times the normal range.

My Humira antibodies were at a “71” and the level of drug was 3.9 ug/ml which was said to be “ok”. The doctor’s conclusion is the Humira is not working well enough.

Mayo clinic is recommending I increase my Humira frequency from every 14 days to every 7 OR go back to azathioprine and allopurinol. They are leaving the decision up to me…….

After I told my local GI doctor the Mayo clinic findings he is now recommending I keep my Humira frequency the same and add Azathioprine and Allopurinol. He said that increasing the frequency of Humira would not increase the therapeutic benefit since the drug level was already “Ok”. I am not excited about the idea of taking all three medications at once.

I’m still waiting for the Mayo Clinic doctor to contact me but he's impossible to get a hold of. Any advice would be greatly appreciated!

(I have also been receiving iron infusions on and off for the last year with no success in stabilizing my iron stores. My hair has also been shedding in the same time and I have really bad fatigue.)

 

[nogutsnoglory]

Well I would certainly exhaust your options on Humira. There are other drugs like Cimzia and the new Entyvio. There are also clinical trials and off label uses for other drugs that can be tried.

 

[Gianni]

Hi KHCD5, welcome to the forum

It sounds like you've had a rough go of it recently :/, sorry to hear that.

The doctor (who was assigned to me by the surgeon, not my GI doctor I had been seeing since 2007) took me off the Aza/allopurinol and put me on Remicade saying it was "safer" and had fewer side effects.

I'm curious as to why, if the aza/allopurinol had worked so well in the past, the doctor put you on a brand new medication. If it were me, I'd try to get back onto what had worked so well in the past ASAP. it's up to you if you would want to include the humira in the regiment or not. Did the humira give you an adverse side effects like remicade did?

I also had issues with remicade in the past and I wanted off of it as soon as i could, so they put me on humira and it was even worse for me. i felt like a zombie most of the time and I ended up getting Pneumonia 3 times in just under a year of the medication. It's important to find out what does and doesn't work for you, so if humira is giving you the same problems remicade did, try to stick with the aza as long as you can.

Out of curiosity have you had your fecal calprotectin levels tested recently or at all?


You may want to check out treatment options like Enteral Nutrition
so you can give your gut a much needed rest while you try to get your flare under control.

Also if you are interested many people, including myself have found that diets can be a Godsend while in middle of a flare and can help you in the long run. Diets like the Specific Carb diet and the Paleo diet have helped many people on this forum. Or you can check out the General Diet subforum to get some more information on the topic like helpful supplements, fitness and meditation tips, etc.


You can check out the Treatment section of the forum to try to get some advice from people who've been on both aza and humira.

I hope you feel better real soon

Gianni

 

[Clash]

It could be that your disease is driven by more than tnf alpha, in which case you may need both the biologic and the immunosuppressant. The biologic suppresses the tnf alpha and the immunosuppressant takes care of the rest.

Since, you sometimes can't go back to a biologic like humira after quitting due to the production of antibodies then it might be a good idea to give the combo therapy a shot.

Also, it's important to note lack of symptoms does not constitute absence of active disease so regular testing is important. If your CPR is a fairly good indicator of your illness then maybe a few months of combo therapy and regular testing would show a decrease there. If CRP isn't a good indicator of inflammation for you then a fecal calprotectin stool test would be another tool to use.

 

[KHCD5]

nogutsnoglory,

Is that the drug that can cause brain infections? I have heard about it but never thought of it as an option from the risk of side effects.



Gianni,

She took me off Aza/Allopurinol because I was complaining of fatigue. I'm convinced that it was more due to an iron deficiency, but she didn't do any tests before she recommended the drug change. At the time I went along with her advice, I have since then taken charge of my care and do not go along with the first recommendation I hear. Also a huge reason I went to the Mayo Clinic was I wanted a second opinion, they did a colonoscopy, MRI, carbohydrate breath test, and a series of blood tests, including the Humira trough test.

I have never heard of the fecal calprotectin test. I have had a fecal test in the past but I believe it was more to test for infections and blood. I have had 4 colonoscopies and two MRIs within a 14 month span, if there is a test to gauge active disease besides those I would definitely prefer that.

Humira has worked but I'm still exhausted and feel like I'm just going through the motions most days. I wake up feeling exhausted which the doctor believes is still from the active disease and inflammation.

Clash,

How would I know if the CRP is a good indicator of active disease? The Mayo doctor said the colonoscopy showed significant activity still, so I'm assuming my elevated CRP is related to that?

Wouldn't the my antibodies for Humira increase if I increase the frequency of the medication?

Has anyone tried Low Dose Naltrexone or Hyperbaric Oxygen therapy?

Thank you very much for the responses and advice!

 

[KHCD5]

Gianni,

I read your piece on Juicing! I just started juicing a few weeks ago and like it so far. I'm very serious about my diet and have been for awhile. I think the juicing helps, along with smoothies for added nutrition. I have read about the SCD and think it's counter intuitive because of the difficulty to adhere to the diet. I avoid dairy and gluten most of the time.

 

[Clash]

It sounds like from what you posted that your CRP is a good indicato

I think there are studies showing that the risk of antibodies doesn't increase with dosage or scheduling tweaks But there are definitely studies showing people who try to go back to a biologic after stopping it have an increased risk.

 

[Clash]

I'm on my mobile right now but when I get to my lap top I'll try to find the studies and post the inks.

Also, we have some threads relating to ldn use in our treatment sections, check there for other peoples experience with ldn.

 

[Justanothercp]

Khcd5
I take Remicade, Budesonide and Lialda (along with a bunch of other stuff), I've been on it for years, I'm still a bit fragile- meaning I flare more often than I'd like, but I function - I work and live. Its been 13 yards since my resection. I also really found the paleo diet has been helpful to me.

 

[nogutsnoglory]

No, Cimzia is very similar to humira. Entyvio is a new one but unlikely to cause brain infections and didn't show risks of such during clinical trials.

The one you are thinking of is tysabri and it's barely ever used these days.

 

[Jennifer]

If you do add Aza and Allopurinol to the mix then you may not need to be on as high of a dose as you were taking. You'll have to have blood work done in a few months to see if you're in the therapeutic range or not then you could increase the dose if needed. Combination therapy is very common and might be a good route to take because as mentioned, you can start to develop antibodies after stopping Humira. If Humira is helping and just needs a boost or if the Aza and Allopurinol were helping but just needed a boost, then it makes sense to see if combining them works for you. Good luck!

 

[KHCD5]

My mayo clinic doctor has responded, a summary of what he said was:

There is no right answer to the predicament I'm in he explained, but he said the Humira level is at a low normal range and the antibodies are positive but are at a relatively low level. The evaluation I had at the Mayo clinic showed evidence of active inflammation.

He said we can all agree the current course is not the right one. He then said he doesn't like giving up on biologics unless there is 100% evidence that it's not working at all. So he still believes Humira is a good option.

He's still leaning towards increasing the Humira frequency to every 7 days, But he thinks the local GI's recommendation of keeping the Humira frequency at 14 days and adding Aza/allopurinol is reasonable. He states there is evidence that combining anti-TNF with a thiopurine can result in higher levels of the drug and less antibodies.

If I did plan to go with the combination route, I would need to start at a low dose of Aza, ex. 25 mg and 100mg of allopurinol. I would have to get my CBC checked weekly and the Azathioprine Prometheus test after 4 weeks of starting the medications.

Any thoughts??? I forwarded this new information to my local GI to see if the had any additional thoughts/information. I would like to make a decision by early next week.

 

[Jennifer]

It's really up to you. If it doesn't work then you could proceed with increasing the Humira dose.

 

[KHCD5]

Bump. I'm still struggling with the decision, I feel like I don't have the time to get it wrong. I've had a rough year with several changes to my medication and haven't felt well for sometime.

I wish the doctors had more of a convincing recommendation instead of always leaving it up to the patient.

 

[KHCD5]

Alright I decided to increase my Humira frequency to every 7 days and I have been on that since Jan 28th, 2015. I had a follow up colonoscopy this past April to see if it was working to improve the signs of active disease.

I had the scope done with my local GI doctor who originally thought I was fine before my trip to the mayo clinic. After the scope he wasn't clear with what he saw but he said I was fine and with some mild activity. He was happy leaving me with my current treatment. I sent all the results to the Mayo Clinic GI and he said he saw no appreciable change and is suggesting I go off Humira and back to the 6mp and allopurinol combination.

Any words of advice on what I should do? I'm thinking I'm more inclined to go with the Mayo Clinic recommendation based on how I feel currently and how exhausted I feel for several days after my Humira injections... It does seem like a waste if it isn't getting the job done completely. I know it is risky to change my medication but If it isn't working like it should then why stay on it? If 6mp and Allopurinol make me feel better than I will be able to notice that right away, if not I suppose I could go back to Humira even if there is a slight risk for antibody formulation...

 

[24601]

These treatment decisions are always hard, I think, and it can feel like a lot of pressure on us as patients to make these decisions.

I think the Mayo Clinic doctor's opinion that the increased dose of Humira hasn't changed anything and therefore Humira may not be working for you seems reasonable. And starting 6mp and Allopurinol seems reasonable.

My concern is how are you going to manage the changeover? I'd be wary of assuming that Humira does nothing, and even if that's true I wouldn't want to leave you with no treatment until the immunosuppressants get to therapeutic levels which takes about 12 weeks. Have you considered trying Exclusive Enteral Nutrition as a bridging therapy?

I'm also surprised that neither doctor has suggested changing to another biologic, perhaps Entyvio.

 

[KHCD5]

24601, Yes it feels as if I'm my own doctor so to speak, which is the reality for most of us at times. I don't feel like I have any room for error in these decisions based on the time I have lost recently from illness.

I agree there needs to be some bridging therapy to keep me at least in the condition I am in now. One recommendation I heard was to drop my Humira back to every 14 days for 6 weeks while taking the 6mp and allopurinol to give the immunomodulators time to reach therapeutic levels. I'm really nervous about it because i'm always worried about it being worse. I know I'm feeling exhausted now, but it can always get worse.

I have been on external nutrition before through a picc line in the hospital. I currently do a couple liquid meals as it is now which i feel like gives my digestive system a break during the day. That is true, I couldn't answer that question on why they haven't suggested an alternative biologic. I know my local GI is very keen on Humira, while the Mayo doctor appears to be more indifferent on all the treatments. My support group seems to think 6mp is a safer and more tolerated option than biologics which I know is completely opposite of what my doctor says. There is risk involved with all of them I just want the one that makes me feel the best.

Also being "Fine" characterized by my local doc, does not take quality of life into the equation which is a huge oversight by most GIs.

 

[24601]

It's not an easy decision. I'd certainly question your doctors about the option of another biologic, especially Entyvio.

Enteral nutrition actually means nutrition that you get through your gut and is usually used to refer to a liquid diet that you either drink or that goes into your stomach through an NG tube. The nutrition that you had through a picc line is parenteral nutrition. Enteral nutrition is much less risky and happily it's more effective too. Doing a complete liquid diet (without normal food, or max 10% normal food, 90% formula) is as effective as steroids for many people. It sounds like you may well be close to doing a liquid diet but doing it fully might just tip the balance. Perhaps worth a try. Normally it would be a 6-8 weeks course used to achieve remission but some people do 12 weeks which would be long enough to get the 6mp/allopurinol to therapeutic levels. There are many different formulas but any complete nutrition drink like Ensure works as well as the more specialized IBD formulations for most.

I think it's definitely important to at least maintain your level of health and not let it deteriorate while you change meds.

 

[Robrich]

KHCD combo therapy is the way to go. I am traveling a similar road. The doctors can only advise so much then they run out of options. in the end Its up to you whether you've given up with humira and want to move on. After being on anti tnfs for awhile it seems our bodies produce more and more of whatever it needs to attack and eventually over run the meds.
Don't waste a lot of time deciding as there is no right decision you just have to go with the best options and see what happens but always have a backup plan.
If aza allopurinol worked before I wouldn't hesitate for a minute to go back to them. You took both at the same time?
Too bad they take so long to work. Budesonide might work for you as a bridge
Entyvio is next up I would think and it also is slow acting. I needed to add MTX to get results.
Hang in there things will get better and new therapies are on the way.
Good luck.

 

[KHCD5]

24601, oh the dreaded NG tube, I have nightmares about that.. not an enjoyable experience. I would be concerned about maintaining my weight and getting enough nutrients to maintain iron stores etc. An option certainly but mentally It may bring more stress than what I want at this point. I may try to include more liquid meals in the meantime. I have requested my local doctor give Mayo a call to possibly come to an agreement. If both Drs agree on a treatment it might lessen my anxiety on what to do.

Robrich, I can't say for sure if I want to give up on Humira, all I know is how I feel now. It has been more tolerable than Remicade and did help clear up the bleeding, but I'm still exhausted and according to one doctor there is still enough disease activity to warrant a change.

Yes I took both aza and allopurinol at the same time. Allo helps increase the Aza absorption allowing for a smaller dose of the aza. If I change and it doesn't work out I would hate to hear one doctor say "I told you so" type deal.

 

[24601]

There are very palatable complete nutrition drinks that many manage to drink - most people find Ensure or Boost palatable. The less palatable, more broken down semi-elemental and elemental formulas aren't necessary for most so many people avoid the need for an NG tube. I understand why you wouldn't want that - NGs work well for some and are very stressful for others. Have you ever tried getting all your calories from drinking only Boost or Ensure?

Also as I said there are newer studies that show you can take 10% of calories from food and have it be as effective. Some people find being able to eat a little food alongside the drinks really helps. Others choose low calorie food like grilled chicken and salads or vegetables to make up more normal sized meals while drinking 90% of calories from formula.

And this newer study had the participants drink only 50% of calories from formula and for the rest of their food stick to a restricted list of 15 foods. In this small study they had as good results as using EEN. A few participants felt unable to drink any formula so kept only to the restricted food list and still experienced good results. If you can't drink much formula then this might be an option for you. Here are the links to the paper and the list of allowd foods: http://mobile.journals.lww.com/ibdj....aspx?year=2014&issue=08000&article=00007#P34 http://mobile.journals.lww.com/ibdj...e=/Original.00054725-201408000-00007.TT4.jpeg

I can certainly understand that you would like the doctors to agree on treatment. Remember that if they don't agree that it's because there is simply is no one clear right way ahead - and though that makes it difficult for you, on whom the decision ultimately rests, I believe that means that it would be very unreasonable and unfair if anyone said "I told you so". Try to put that thought out of your mind. Do ask them about another biologic because some people have success on one biologic more than any others they have tried.

Are you definitely going ahead with the immunomodulator combo? I think it sounds very positive to get that started

 

[KHCD5]

24601, I have tried Ensure and Boost when I was younger. I'm sure the formulas have changed by now but I always had issues with milk isolate protein, and never really tolerated Boost or Ensure well interestingly enough. I may get one to see if I can tolerate them now. I create my own liquid nutrition by blending up vegan protein blend(I'm not vegan but tolerate it better) veggies, greens powder, sometime banana, nuts, etc. When I do eat whole foods I take digestive enzymes before I eat very simple, lean protein like chicken, maybe a rice for a carb source , avocado for fats. When I do eat veggies I cook them and chop them up before eating. I eat a well balanced diet ensuring I get all nutrients my body would need. I also started drinking a lot of greens juice about 3 times a day.

I'll mention the biologic when I get the doctor on the phone, Entyvio is given intravenously like Remicade right? I made a request 2 days ago to have my aza/allopurinol scripts filled. I have yet to hear back so hopefully he will call the Mayo clinic to see why they are recommending the change, maybe he isn't seeing something they are. I hope to start the new treatment this week

 

[24601]

Yes, it's an infusion! Do check out the Entyvio support group here. The experiences are certainly mixed but it just might be the thing to work for you! I always feel like if we've exhausted one med by trying various frequencies and dosages and it's clear it's not working, then, hard though it may be, we have to move on and try the next med in the hope that it will at the very least take us one step closer to finding what works for us.

As to EEN, if you can't tolerate milk proteins then I think you might want to try Elemental 028. It is less palatable but I lived off the orange and pineapple flavor for years - hated it at first but somehow I got so good at drinking it I could just chug it back in 5 minutes and at room temperature by the end! I wouldn't recommend that for starting out though - sip, chilled through a straw!

You sound like you have a really healthy diet but Crohn's and diet is certainly a work in progress so it can be helpful to try the diets that have been studied, when they've got good results, especially when you are feeling a bit stuck as you are now. Have you checked out the diet link above? It doesn't sound disimilar to what you eat now.

The IBD-AID diet might also interest you.

Also even though the ingredients of the formulas don't sound wonderfully healthy they really do have proven efficacy for treating inflammation, so I think EEN is very much worth considering if you can tolerate a formula.

 

[KHCD5]

If aza/allopurniol works that would be great because I found the infusions to be frustratingly inconvenient. Quality of life comes into play, I have tried paleo, SCD but found the benefit to be minimal. Liquid nutrition is something I think helps a lot. Finding a happy medium is what I want, anything extreme like all liquid I don't think would be possible to adhere to long term, losing weight, and simply the torture of not eating solid food. If there was a 100% proven therapy out there I would have no problem doing it. Thank you for all the info! It is overwhelming at times at all the ways we can approach diet and medication. If only there was a cure!

 

[my little penguin]

Bright beginnings makes a soy drink for kids so that might work for you as EEN
Did you take humira with an immunosuppressant such as Mtx or Aza ?
That tends to make a big difference .

Good luck in your decisions

 

[KHCD5]

my little penguin, I have yet to try both Humira and immunomodulators. That was a suggestion early on from my local GI but after consulting both doctors they agreed they don't like to combine the two as it can increased the chance for lymphoma etc.. Personally I would be nervous to do so unless both doctors agreed. It sounds like either way there will be a period I may be on both as I transition off one and on to the other. Also my levels of Humira are at 18 ug/ml which is fairly high. To my understanding the aza is used in combination to increase the effectiveness of the Humira. It was described to me by the Mayo that I have already achieved maximal benefit of Humira based on the level of the drug in my blood.