Yo-yoing mild - moderate flares....Remicade?

I honestly don't know how much longer I can handle this. I am in a flare at the moment and doing steroid enemas. They are helping except I am still having horrid cramping. Bleeding is stopping. But the thing is, I'm tired. I can't metabolize 6mp properly but it's keeping the more severe flares at bay. I have tried Allopurinol to boost the good effects of 6mp, but found out I was allergic to it.

But because I am not in severe flares, I sort of minimize my symptoms. Thinking that only in severe flares that should I truly consider Remi or surgery. I have contemplated surgery a lot in the past. But I'm scared so I am not sure if I am ready. So I thought that I would ask my GI, when he gets back from vacation, to try Remi. I can't keep having these flares that range from mild to moderate - it's wearing me out.

I am running out of options. But I thought I would ask you all...have you started on Remi with mild to moderate flaring? Were you all in severe flares when you started?

I know they reserve Remi as one of that last line meds and I'm at that point. I can't keep using the steroid enemas because of the years that I have used them, I am highly sensitive to the side effects now (insomnia, hunger, leg cramps, mood swings). I can't take mesalamines or they make me feel like I have the flu. It feels like I am just putting off the inevitable anyway.

Sherry, if I were in your shoes, I'd FOR SURE start Remi or have surgery. I'm a little bit concerned about the long-term effects of Remi, so that's why I can't say for sure I'd use it. But I know I wouldn't deal with the back and forth symptoms that you are, partly because it seems to be affecting your quality of life, and partly because I'd be worried about cancer risk with near constant inflammation.

Either way, good luck, and ((hugs))!

Oh, and have you thought about FT, antibiotic therapy, or LDN? Maybe one of those would work?

My quality of life is not low. I still get out there and do things - Uc be darned. But it's pain and the what if's that bother me the most. I don't let Uc stop me from enjoying things - I can compartmentalize things fairly well. But sometimes I have a hard time just facing the day.

FT? Umm no - I'm not past the ew factor yet. I will look into the other options tho.

Healthy? What's that?? lol

Red, I only have had time to read your top post on this, not the replies. I need to get going to work, but want to give a very quick note here...

I have been adamantly refusing Remicade for two years with mild/moderate symptoms. Both my GI and a second opinion at a respected GI clinic in a different city have suggested that Remicade is the next option, and that I really need it to calm things down. I have spent much of this year trying my hardest to control things, with mixed results. I am, however, wearing down. Nothing has given me long term success and great quality of life. I am opening up the possibility of Remicade in my mind. I would have to accept the possible side effects mentally beforehand, but the quality of life it could give me would be amazing. Even if the disease isn't fully exacerbated it is still very wearing on the body/mind as a whole. Even mild symptoms over time have a damaging overall effect when compounded year by year.

Just my two cents. I hope and pray that you find your solution.

I feel like I was in your shoes just over a year ago where I'd spend half the year in a moderate to severe flare and the rest of year I would be recovering from it. When I was not in a major flare my GI described my condition as smoldering.
I have osteoporosis from steroid use, so I opted for Remicade last year. It has kept me from flaring this year. I still have issues, but they are probably IBS. I think about the side effects all the time and they are very scary.
The nice thing is that as long as I manage my food for the IBS issues, I have a new level of feeling good. I don't plan on taking Remicade forever. My plan is to start the talks on surgery because my next flare will be my last.
I can't tell you to take Remicade, but I do wish that I had decided to do it sooner. Life is a lot easier when you feel good.

One last thing to note is I am also hosting human whipworms. I started the whipworms a few months after starting Remicade. There is no way to know which one is helping me or if it is both or if the worms are causing my IBS. I thought I would mention it because it may be something to consider.

Hi Sherry,

Sorry you're having such a tough time with all this, if it were me I'd try all the more conservative routes before doing immuno drugs, sx etc and if they don't work then your decision will bs made for you

Be well

IYou are now lining up the last of your options at this point.

But, considering you have a LOT of other autoimmune and and not autoimmune health issues, I'd be afraid regarding side effects to do anything more than you're doing already.

Because you have diverticulosis and UC, maybe surgery is a best option, but if you want to first try other meds...then make your limit as bbc says, the decision will be made for you ultimately.

q

^Sherry this thread is so appropriate to me right now! I made my decision today I will start either humira or remicade. It feels better knowing I have made a decision.

I see my PA next week and the GI in September to start the process.

I hope the remi works great for you!

My GI suggested Imuran in the spring of 2010 for what I thought of as mild-moderate UC. I know if that didn't work, she would have suggested Remicade as I was becoming anemic from constant small-level blood loss. I didn't think I was bad enough for either of these drugs and opted to try VSL #3 instead. I thought that was my miracle drug as I entered into a 4 month blissful remission. It was the first time I had stopped bleeding for that long in about 10 years. That all came to an abrupt end when I was hit with a severe flare in September 2010. I really wanted surgery over Remicade, but I was extremely ill and in rough shape, so I decided to give the Remi a try. I am glad I did because, though it worked, I had a horrible reaction to it that basically made the surgery decision very clear for me. Now I never have to wonder about Remicade and know 100% that surgery was the best choice. After trying Remicade, your decision will become clearer too. Either it will work wonders and you will be happy with it or it won't and then you can move on to the next step in your plan.

It is so hard to know what this disease is going to do. I had always considered my UC to be mild-moderate. I had the occasional bad flare with urgency and multiple trips to the bathroom that sent me to the hospital, but mostly I just dealt with pain, bloating, bleeding, fatigue and mucous and got along okay. Then, bam, all of a sudden I have pancolitis and am forced to decide between heavy duty drugs and surgery in a very short amount of time. You are doing a great job of looking ahead and researching all your options so that you can make the best decisions.

I will say that for me, surgery has been a blessing, and I can't believe how great I feel. It makes me realize that I really was doing pretty poorly all those years with UC. I too downplayed my symptoms and now understand what it actually means to feel healthy.

It sounds to me as if you're thinking it through very clearly and logically. I believe I would follow the exact same steps if I were in your shoes.

I will be very interested to know what your GI thinks.

Sherry

I am in a similar situation.  Just had a c-scope on wednesday showed moderate inflamation in left colon.  My doctor said he wanted to talk about ramicade or humira.  I asked him about the risk of lymphoma and he told me it is a very small risk.  He said you take bigger risks in your everyday life however I'm only 26 so am I really going to be taking this for the rest of my life?  I told him I am going to try asocal and diet modification a little longer and see how that works for me and then I will talk about those other drug options. My quality of life isn't bad either however I know its not good to continually have inflamation in the long run.  I hate worrying about this stuff and no one really seems to understand except of course for you guys :)

Deacon, I did have a nice remission going - clinical proven for about 6-7 months. But normally I have no respite.

I'm still on steroid enema's. Doc wants me on them for another 2 weeks and than taper off. I went in for my Tb test and had some blood work done. I decided to give Remi a shot. I should know sometime this week or next week when my first infusion is.

So far, I am feeling a bit better. Cramping is easing, blood is minor to almost non-existant, urgency is still there as well as the left sided pain (minor now) and I am still going about 5-6 times in the morning with D. My appetite is returning, tho at times I still feel a bit nauseous.