Returning to the forum, need advice for worst flare in years.

oolyooly said...
I've never experienced a biologic, so if anyone could explain the benefits in comparison to such drugs as azathioprine I'd be interested to know. It seemed my GI has high hopes for the drug.

There are generally three classes of ulcerative colitis medications. UC is an autoimmune disorder (or at least an immune deficiency) in which the immune system attacks the lining of our large intestine causing inflammation, diarrhea, pain, blood and mucus. Class one is topical anti-inflammatory medications with the active ingredient of mesalamine (examples asacol, lialda, pentasa, delzicol, rowasa, and canasa), they're generally well tolerated by most and few experience side effects.

From here on out, classes two and three are both medications that target our immune system, and slightly weakening our immune system.

Class two is immunomodulators (examples are Imuran/azathioprine or 6mp) these medications intentionally lower your body's white blood cell count. WBC are our bodies attach dog, directly causing inflammation. The less WBC you have, the less inflammation you have which improves our UC symptoms. These are very slow working medications that take multiple months to work. The downsides are you must have regular blood work while you remain on these medications (every three months), as your WBC cannot get too low. WBC has to stay within a certain safe range.

Class three are biologics (examples include Remicade, humira, simponi, and entyvio) which interfere with the immune system's ability to signal and initiate an attack on our large intestine. Remicade/infliximab is what's known as a TNF-alpha blocker. Your immune system creates a protein called TNF-alpha that essentially says "hey, send an attack over here" and WBC respond by attacking that area. Remicade is a bioengineered protein that is designed to dock with TNF-Alpha proteins. When one remicade protein docks with one tnf-alpha protein, the signal to attack is muted in that one instance. A typical infusion has numerous of these proteins and it enables you to mute or at least greatly silence your immune system's call to attack your intestine and you can heal as a consequence. Remicade requires no blood monitoring. Generally there are no side effects for the vast majority who take remicade. You might feel slightly sleepy afterwards, have a slight headache, etc. Usually the pre-medications prevent it.

Classes 2 and 3 are very similar with their safety profile. As they both slightly suppress your immune system, they carry the same increased rare but increased risk of infections requiring antibiotics becoming serious (UTI, bronchitis, bronchitis, etc) and a very small lymphoma risk (a 0.04 percent as compared to 0.02 for the general population).

So it's is 10.05pm UK time. I have completed my first infusion of infliximab with no hiccups to speak of !

After a most intense and horrible week I shall be heading home a much happier and relaxed man come the morning.

This week really brought to my attention how close I was to surgery ( surgery being out of my hands). And all this has hit home pretty hard with my family and especially myself.

I'm contemplating changing almost every way I approach daily life in order to firstly achieve remission, but also successfully retain it for multiple years if not indefinitely.

One thing I'd like to mention is that I cut down smoking heavily 2 weeks prior to my flare, my GI mentioned this could of been a factor involved. I don't want to smoke, but are patches as effective? I know for sure I'm giving up alcohol though and that will be a real toughy.

All in all my heads a bit all over the shop, I'm very euphoric and excited for the future. Again thank you all for your continued advice and support. If there is anything you would like to add in regards to the future on infliximab or making better lifestyle choices I'm all ears.

Here's hoping the Remicade brings you to remission! And I do hope you can quit smoking for good; it's bad for heart, lungs, etc., etc. RE alcohol: your gut may eventually tolerate a moderate amount, but no binges. Also beware of caffeine. Many forum members do extremely well on Remicade for long periods; hopefully you'll soon join their ranks. As for present euphoria, you'll have to wean off steroid med so give yourself at least a month to readjust. When back at your studies, try hard to get adequate sleep & eat nutritious food at reasonable hours so that you don't exhaust yourself. University life can be stressful with many demands on one's time; a UCer has to prioritize so make yourself lists of essential tasks and don't worry about being perfect in everything. You have to take care of your health 1st, and the rest will fall into place. Best wishes & let us know how you're doing when time permits. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)

Certainly, they make us all a bit nervous when first considering taking them, I was no different. In the end, it's all about quality of life with chronic illness and those treatments give you the possibility of improvements there. Whereas refusing them keeps you in the same situation you're currently in, struggling.

I've been on remicade and 6mp (equivalent to aza/Imuran) simultaneously and I was not sick any more than usual. It's pretty common to combine these two medications for the best results. At uc doses, you're far from shutting down your immune system, it's still very functional immune system (it's just slightly weakened). The infection risk doesn't impact every day cuts, scrapes and bruises. Rather, it impacts the type of infections that normally require antibiotics to treat (uti, bronchitis, sinus, etc) and those will get severe faster while on these medications, and require antibiotics sooner. Same goes with colds or flus, if you normally have one cold per year then you might have two, and it might be a little more severe in symptoms plus last a couple days longer than your normal.

Vigilance with hand washing during cold & flu season seemed to help me a great deal. As most cold/flu spreading happens through shared contact with door knobs, hand shaking and other similar things. They're medications that have helped many of us reach and sustain remission and worthy of consideration. Is it to much too soon? To me, that's a mental roadblock we impose on ourselves. Uc can be darn aggressive in some of us, and it's important to have an equivalent and appropriate treatment plan that matches the severity of your individual uc. Good luck in your decision.