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Hi there, I've been in total symptom free remission for almost a year now, which is amazing since I spent most of 2018 severely ill with Crohn's affecting my stomach, small and large intestine. I stopped taking the antibiotics after 6 months due to cost and due to the uneasiness about taking...

If you are on a biologic and in remission it is strongly discouraged to switch to a different biologic, your doctor should know this. You don't know that stelara will work for your daughter, she may as well stay on remicade if that appears to be working If she switches to stelara, and then it...

I had a cold at one of my infusions. They said they were happy to give the infliximab to me as long as I didn't have a fever and as long as I didn't have any sign of a chest infection such as coughing up phlegm, which they checked me for both of those and said I was fine to have it. My cold went...

There is a lot of truth in this. If you look at my response a few posts ago I was more inclined to stop the infliximab and stay on the azathioprine, because that was the advice from one of my doctors, but after researching a bit more myself, you are absolutely right, if you were going to give up...

I plan to stay on it for at least 6 months but cost and side effects may be a prohibiting factor. If it starts to give me tendinopathy or other side effects and my Crohn's is still in remission then I may continue with just the infliximab and azathioprine. I don't know for sure because the...

I managed to come off it after I began receiving infliximab. It needs to be tapered slowly over at least a month, you should leave at least a week every time you drop 3mg. If you are tapering on the above recommendation, and you are still experiencing flares, then that is a sign that your other...

Before I begin I'll give some relevant information about my background. I am not a doctor but have always been interested in medicine and biology. Five years ago I worked as a data analyst for three years where I published two papers in peer reviewed scientific journals on the topic of how...

Clofazimine is harder to get than most of the others and actually (according to the sources I've read) not that effective against MAP. A good book I've been reading is the following...

Hi Nosebag. A good reference for the drugs and dosages are here: https://humanpara.org/for-clinicians-chamberlin-amat-protocol/ Your dosages are correct apart from the clarithromycin which should be 500mg twice daily instead of once. How did you get the Anti-map? Hopefully you should see...

Yes they are separate, the anti-Map I am paying for privately so I can have that as long as I want and in combination with any nhs treatment I have. The nhs doctors have the opinion that anti-map isn't effective so their position is basically "go ahead and add on the anti-map to what we're...

I swapped the clarithromycin around a month ago for azithromycin as it is cheaper, has a longer half life (and so maintains a more consistent level in the body throughout the day, and has been shown in some studies to be more effective against MAP) I also removed the rifampin and started...

I forgot about this post for a while but I am doing very well now. Within a week of starting the infliximab all of my symptoms went completely away and I started putting weight back on. I was previously underweight. My calprotectin went from being around 1100 to low 20s within 3 weeks. I have...

There is certainly a differing of opinion between different professionals, so that may be what your consultant recommends, but here in the UK it is more common that a thiopurine is continued indefinitely to maintain remission after the combination of a biologic + thiopurine has initially...

When I was first diagnosed I was put on pentasa alone, even though my crohn's was very severe. After around a week my symptoms massively improved but it only helped me for around 3 - 4 weeks before things started getting bad again and I had to go on budesonide. I do believe it is beneficial but...

Usually you would have the Infliximab for at least a year and the 6MP or Azathioprine for at least 5 years. Although most studies recommend continuing Aza indefinitely. It is not only to reduce the chance of antibodies but also to maintain remission. I think a study that is very relevant to...

Another update. I posted a chart at the start of september when I was flaring. I then started Anti-MAP antibiotics and infliximab and you can see the massive drop in resting heart rate afterwards at the start of october. It seems to be going up very slightly for the last week but I am putting...

The risk with taking clarithromycin and budesonide together is that the clarithromycin may inhibit the breakdown of the budesonide and allow it to escape the first pass metabolism and become more of a systemic steroid than a localised one. In short it may mean that the budesonide acts more like...

Probiotics have been shown in multiple studies to be beneficial for Crohn's. As for specific species, I am not sure which are better than others. I know that bifidobacterium is better for the large intestine, and acidophilus for the small intestine. There is one in the UK called VSL#3 which has...

Well I had my first infliximab infusion 6 days ago now but before I speak about that I'll go back a bit before it. I had a calprotectin test the day before the first infusion which I've just got the result of today: 1056 mg/kg. So still pretty high even after 6 weeks on anti-map antibiotics...

Well I have decided to go ahead with the infliximab and am having my first infusion tomorrow. When I started this journey, I really wanted to have anti-MAP antibiotics by themselves, and no other treatment. Partly because I wanted to show to the world what my response would be, and do my part...