Fed up with Infliximab/Remicade side effects and considering SCD

[Clem26]

Hi everyone, I live in north east England. Diagnosed with Crohn's Colitis in 2011. My brother was diagnosed with Crohn's in the 1970s at the age of 18. I developed ME in the 1980s in my twenties. After many years I was able to overcome this using diet and supplements, and trained as a nutritional therapist. I was astonished to be diagnosed with Crohn's myself in my fifties.

I found myself on Prednisolone, but tapered it off in a few months and asked my specialist if I could try working it out with nutrition. However, after six months my weight had gone so low I was hospitalised. Back on to Prednisolone and then reluctantly began Azathioprine (Imuran) but didn't do too well on that - one symptom was developing episcleritis in both eyes and looking like a vampire! I was persuaded to try Infliximab (Remicade) which worked great, and despite my worries about the immune suppression I was fine for 2 years.

However, one year ago I started a throat infection, and didn't make any progress until five months later. I was taken off Aza, and in the autumn had a break from Infliximab for 4 months. At first I began to feel much better, getting over the throat trouble and regaining strength and energy, but unfortunately the intestinal inflammation skyrocketed, and I had a lot of painful wind and lost weight. Had to go back on the Infliximab in December, and started a bad cold the day before the infusion. This time it developed into a bad sinus infection. After a year of sore throats, headaches, low energy and no strength, I have been looking seriously at the SCD. But I'm on 8-weekly infusions and I don't know how I can taper that off. Once I go back on it, most of my Crohn's symptoms vanish, so I wouldn't know if the diet was working or not. I'd like to post some questions soon.

 

[Clash]

Welcome to the forum. How did they determine AZA caused episcleritis? Episcleritis is a known extra intestinal manifestation of Crohn's disease. It usually runs concurrently with active disease present in the GI tract. There are other EIMs that affect the eyes, joints and skin with CD as well. In the beginning of our dx, Episcleritis was a red flag for us that my son's disease was flaring.

There is a diet section on the forum that you may want to read through. It may answer some of your questions. Are you and the GI thinking if the diet doesn't work you'll move onto another biologic? I ask because a lot times your body will build up antibodies to the med and it won't be available to you anymore. Good luck on your journey, I hope you find relief.

 

[24601]

I agree with Clash that the risk of losing the ability to use Infliximab (since you do experience improvement of your symptoms with it) is something you would want to consider seriously.

Related to that, I see that you said you stopped azathioprine but have you started on another immunomodulator? As that is also a factor in helping prevent your body from forming antibodies to Infliximab.

I do understand the desire to stop taking meds and particularly when you pick up a lot of infections. I did for a while on Humira - there was a time when it seemed I always had a bug and took forever to fight them off. I think one of my doctors thought I was mute because I whenever I saw him I could barely speak with the throat infections that kept recurring. But somehow for me that time passed and I started to do better. I'm also incredibly careful about doing all those things that stop you picking up bugs - lots of antibacterial wipes etc!

I've tried SCD myself and while I had benefit in terms of symptoms (possibly because I suffered from SIBO and SCD is good for that) it can be difficult to know whether it is controlling the disease adequately. Of course that's always true of any treatment, and bloods and fecal calprotectin results are important to monitor whatever you are on, but I think it may be particularly true of diet as the diet can minimize symptoms so we can't go by them quite as much and need those other measures of disease activity even more.

Good luck with whatever treatment you decide on! I hope you start feeling truly well!

 

[Clem26]

Thanks for the replies. I didn't actually mean that Azathioprine caused the episcleritis. It just wasn't controlling the inflammation, hence the red eyes. As soon as I started the Infliximab the condition cleared up, though they kept me on Aza until last year. I don't think that Infliximab is stopping working, it actually calms gut symptoms down quite quickly. My problem is that I have no resistance to infections. I don't mind being on a strict diet, if it means I can do without meds. My brother had one operation when he was first diagnosed but since then has largely lived without meds. Our Crohn's is in different places, so really it can't be compared.

I'm looking forward to being part of the forum. Thanks.