Aza vs. Remicade/Humira

[Captainplanet4]

I had a GI appointment today, just to go over some blood work and a mini check up. Anyways I was just diagnosed with this a little over month ago and I have been on Aza 100mg for about 3.5 weeks almost a month, I also on Pred 40mg, and protonix as my first go around for medication. Well lately I have still been getting back stomach cramps and some bloody stools, so I told him about the problem. After hearing this he says we have two options right now, I can increase the Aza and see if that will control the symptoms but it will take a bit more time. OR I can have you look into Remicade or Humira for a different alternative (which is what he suggested). He decided to increase my pred to 60mg a day, just to see if I can get the cramping to go away. But I need to decide what to do... Should I already try remicade or Humira this early into the disease, I haven't been on Aza for that long (usually take 12 weeks to really notice) or should I just stick with Aza?

Thanks!

 

[beth]

You need to get the disease under control: how are you doing with the pred side effects, how do you feel about the biologics?... questions to ask yourself really.

 

[Captainplanet4]

The pred hasn't been too bad... I have had joint pain and have been pretty bloated. And for the biologics the doctor said it will have similar side effects as the Aza, possible lymphoma. But I would really like to get these problems under control. Im just not sure which option would be better?

 

[imisspopcorn]

It is a decision you will need to make for youself....It took 2 months for me to get approval for the Humira and Remicade to begin with....I was on Azathoiprine before surgery....Man, I really hope that since you are newly diagnosed that the meds you are on would kick the disease into submission.....Can you tolearate the symptoms for a a little while longer to see if the Aza works?

 

[kenny]

It's a simple choice where I live.

The cost of Aza and Mp6 is very cheep for how much you get out of them.

Biologics cost a boat load so they wont use them unless the Aza,Mp6 doesnt cut it.

I have drug insurance to help out with this but I am not sure how much of the cost of the biologics gets assigned to the patient/insurance or our health care system. But this is a deciding factor where I live. Just thought I would throw that out there for you to add.

 

[Kev]

I was on AZA briefly years back... I went toxic on it, and landed in the ER. It was not a fun experience... There are also the long term affects/risks that are associated with it. Sometimes long term isn't so long. I recently went for a follow-up... my doc noticed something... and since I'd been on AZA, even tho for a relatively short time, I was immediately referred to another doctor, a specialist. (not only was I given a referral, there was also a hand written note, and my doc even called.).. I leave one office, go up to the 5th floor to try to book an appointment.. the receptionist starts to shake her head in a negative manner when I ask about making an appointment ASAP, before I give her the note... anyway, she reads the note, starts to say "Just wait a moment".. when the specialist walks out... and says to me "Are you Mr So N So (not really my last name) I say yes.. He says.. "Your doctor just phoned me, come right in"... Anyway, long story short.. I diligently go for my follow up, my doc does a thorough follow up exam, spots something, and then goes above/beyond for me... based on the history of my illness and the meds I was on... AND the specialist says... after the exam.. "pre-cancerous, I think we caught it in time"... I'll find out over the next few days if he is right.

My point? Know the drugs you are on, educate yourself, ask your doctors, and do the follow-ups... mention every little thing, get everything checked, KNOW that sometimes the cures are worse than the disease, and be very diligent. You never know, it could save your life, right?

 

[kenny]

glad they were on top of it Kev.

We are all in the high risk category due to crohns. They say early detection is the best defense we have.

 

[crazycanuck]

Yeah do your research for sure. That being said I've only been on 2 meds myself in my 2 and a bit years now. Asacol, and now AZA. AZA has changed everything for me. I had some pretty bad stomach problems, passed out, bloody stool, D....and it goes on. All of a sudden about Christmas time something clicked and I swear those pills have changed my life thus far. I was urged by my doctor just to stick it out a little longer. That being said these docs have been doing this a long time and we are all different, just because this working for me unfortunately doesn't mean it'd work for you.

 

[Kev]

Well, (and this is not from personal experience, as I haven't tried it) but a lot of folks swear by the Specific Carbohydrate Diet (SCD for short). It would seem obvious that if all you are doing is changing your dietary habits AND it works for you the individual, then its a no brainer. I looked at the diet, but it was simply too strigent (I knew before even attempting it that I'd never be able to stick to it) AND.. just my personal take on it.. I wanted 'something' that would give me back as much of my 'pre-Crohns' life as possible. SCD to me appeared to be me sacrificing a semi normal life just to avoid my Crohns.

I currently am on LDN. Of all of the drugs in the arsenal to combat Crohns, it has the fewest and most minor 'known' issues/complications, BUT.. it is soo new, only 1 clinical trial (2nd is underway) and no one has ever studied the long term effects of low dose treatment... so everyone is assuming that it is similar to regular dose treatment (that has a 30 yr +/- provenance). I've been on it for a while, it has done wonders for me, it seems totally harmless so far.. but there are no guarrantees in life. What is known about it versus what is known about other crohns drugs and their effects (short/long term) is like comparing Girl Guides to the Hells Angels.. The issue is what isn't known.

Anyway, apologies for side-tracking the main topic, just answering the query.
We have an entire section devouted to LDN if anyone wants to learn more.

 

[kenny]

I think your point on other treatments is a good one Kev. I'm on imuran now and I have read a few of your posts regarding it. It is Not without its risk for sure. But....

The SCD is a stronger treatment than many people give it credit for. Not in it being a food cure thing. But in that it gives the Bowel rest. And that should be the front line treatment ahead of prednizone. In Asia the Elemental diet is the primary treatment because it provides bowel rest and is far far more cost effective than our drug heavy modern medicine.

When I was first diagnosed I toughed out the initial restriction/infection with bowel rest and antibiotics. I ate nothing solid for 2 full months prior to surgery. Now that I am on Aza I find I consider what I eat and if I am able to eat that Because Im on Aza? If I ate more restrictively would I be ale to stop Aza? My doctors want me to be able to eat what ever I want to and they are doing the best they can to make sure I have a healthy full life. But If I ate more restrictively and dropped meds would that not be more healthy? Its going to be a personal decision for everyone. I watch people cramming dinner in a box down their gullet every day at lunch and they feel a bit sorry for me eating a tuna or salmon sandwich. Funny thing is I'm eating that because It tastes better, fuller and healthier than what they are eating. I'm eating for that and not because I have Crohn's.

So the on topic part is . . . . . I'd make sure I was doing all I could eat the best I could to get the bloody stool under control and hope like heck I could off aza and not have to start messing with the biologics at all. But I am only a yearling yet too. Who knows how I will feel 5 or 10 years down the road.

 

[Kev]

Its been too long since I looked at the numbers, so I can't recall whether it was AZA or Metho, but I know one or the other of them seemed to display diminishing returns over the course of treatment (I think it was metho, but it could have been AZA).. As I recall, whichever one it was, approx. 66% +/- of those taking it experienced good results in the 1st year, but by year #2, 1/3 of those who initially experienced improvement failed to continue to do so, and I think (my memory isn't what it used to be) that trend continued.

Now, my exposure to AZA was brief.. I did OK in the initial stages, all my bloodwork looked fine (I had bloodwork every week when I started on it), but shortly after my doctor ramped up my dosage, my body went toxic on it.

But, in earlier treatment, I was on pred (the whole ramp up then taper off process) for the better part of a year... and I noticed that on it, I witnessed a similar thing... my initial dosage gave me good results... I'd taper off of it, and my Crohns would come raging back... Then my next pred round didn't do as well, so they had to up my dosage to get me back to the same initial level.
And round and round it went.. till I was maxed out and not achieving as good a result as my initial treatment. It's all conjecture on my part, but I think that whatever the root cause of Crohns is (MAPI or otherwise) it is a resilient and relentless opponent... So anything one can do to gain the upper hand is a smart move. I stick to a low fat, low fibre, low residue, hi protein, lactose free diet.. and I take supplements and probiotics, rest a lot, and exercise.