Humira - treatment failure

[mcd]

Hey everyone, I'm new to the forum and looking for some info on Humira and it's treatment life span. I and 42 and have been diagnosed with crohn's for 10 years, although can recount symptoms since i was 15.
I have been lucky with the disease not having fistula or blockage just pain, fatigue and chronic diarrhea. I have tried a few treatments since diagnosis:
* prednisione and then salazapyrin - no effect
* diet - some success
* denial - false effect
* humira - remission for 2 years
no at the end of 2 years on humira i'm having some symptoms again and i'm wondering if anyone else has experience of when humira stops working and what they tried next.
I'm based in south africa and would love to hear from anyone on the forum but any south africans would be great.
thanks

 

[InstantCoffee]

I started on Remicade and was switched to Humira when symptoms returned. What happened and has been happening progressively since I was first put on Remicade is deterioration of my diet, I've become intolerant of more and more foods as time goes on. First off the list was peppers and skinned vegetables, others like apples and pears soon followed. Then potatoes, hamburger, gluten, high fructose corn syrup and cooking oils in roughly that order started to show up.

I think diet is probably one of the most important things in controlling your symptoms, as right now commonly prescribed medications don't seem to be able to completely stop the fact that eating foods that might be hard for you to tolerate, but at first produce no negative effects, will eventually result in leaky gut progressing to wear you tolerate less and less foods.

 

[mcd]

Thanks for the feedback. Aaaaahhhhh. i hate the diet thing but once again it makes sense - why don't the doctors see that? right back to a food diary it is then. might just wait a few more days and get through new year first.

 

[Angrybird]

Hello and welcome to the forum

I agree that it is worth having a look at your diet in case this is aggrivating things as when feeling well it is easy to slide in this area.To be on the safe side I would also let your doc know what is happening so they can just check on things tummy wise, when was the last time any kind of tests were done to check on disease activity? I have not been on Humira myself but we do have a sub forum for this that is worth checking out to have a chat with others about how they have done on this: http://www.crohnsforum.com/forumdisplay.php?f=59.

Wishing you all the best and please keep us updated on how you are getting on.

AB
xx

 

[mcd]

Thanks for the advise and the link to the humira connection. Plan to see the doctor on the 4th just letting all the festivities of the season settle down etc. forum is super - great to have input from people in the same boat.

 

[PsychoJane]

Hi MCD,
It might be several things that triggers the symptoms at that point. Though, it is frequent that people become "resistant" to the Anti-TNF medication and that is often true after two years of treatment. For myself, it was faster, symptoms came back after only 8 months so we had to increase the dosage and eventually get surgery. Your doctor will probably check for the antibodies. Generally the solution is to increase the dosage of humira (every week instead of every second week) and/or add an immunosuppressor to keep your body from building the antibodies (MP6, Azathioprine, methotrexate).

 

[David]

Welcome to the community

As I read your post, my thought process went in the same direction as PsychoJane's. At present, is your Humira injection taken every two weeks or once a week?

 

[mcd]

Thanks for all the info guys. Truely helpful. Going to my GP tomorrow for a general check up to eliminate some other stuff and then onto the Specialist if necessary. Will ask about the possibility of increasing the dose from fortnightly to weekly - in the last few months have thought that myself - have been getting to about 3 days before the next injection and just feeling a bit off and thought maybe I need this more often.
Really great to have people to talk to.
Thanks

 

[InstantCoffee]

Thanks for the feedback. Aaaaahhhhh. i hate the diet thing but once again it makes sense - why don't the doctors see that? right back to a food diary it is then. might just wait a few more days and get through new year first.

Doctors are often trained to treat the symptoms, and if they see you aren't able to eat certain foods they try to make you 'normal' but sometimes this just isn't possible. They see intolerance as a sign the medication isn't doing it's job, and their solution is more medicine or different medicines, but realistically I feel this is a bad treatment in comparison to proper nutritional advisement.

I spent so long pointing fingers at the medicine and hoping for doctors to make it right I finally decided to take things in my own hands and do my reading and what I found was basically diet and natural remedies are often as important as the prescriptions you take.

Now when I come in with good news and weight gains my doctor asks me what I've been doing instead of me asking what he can do for me.