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Remicade users, how are you doing?

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Ulcerative Colitis
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Posted 5/24/2014 11:25 AM (GMT 0)
Just had my 6th infusion - all has been going well so far. I have been off pred 7 months which is insane! I introduced L-glutamine powder to help with form as that was one thing i was having trouble with. Worked great. Now, the past week, the form has disintegrated again - and I'm quite crampy and gassy which scares me into thinking some inflammation could be starting up again. Don't know if it's because I haven't eaten great this week - and I've also had three days where I ate brown bread! Thinking of reintroducing my enemas every second night. I literally only stopped using them two weeks ago after 9 months of using them. I actually can't go back to being sick again!
Posted 5/24/2014 5:06 PM (GMT 0)
Minners, my dr told me the cort enemas can provide relief and definitely can't hurt especially short term. She said to use them (even 2 per day, not only at night) if there's any sign of blood or mucous, even though remicade is working generally. The idea is to hit it hard & quickly. I don't think every other night would help at all, based on her advice and what I've read. I hope you feel better soon.
Posted 5/24/2014 7:51 PM (GMT 0)
Thanks contentprof. Going to start back using them for a few more months before tapering just to keep that angry inflammation at bay!
Posted 5/25/2014 1:57 AM (GMT 0)
Doing great! I actually forget to do preemptive bathroom visits now.
See my signature.
Posted 5/25/2014 2:26 AM (GMT 0)
Peety, Wow, no preemptive bathroom visits; that's great! How many infusions do you think it took for you to really feel good?

Canadagal, I am actually not doing too bad lately. I tried taking VSL #3 DS and it really messed me up; enough to where I was miserable in the mornings. Once I stopped that and started back on cortifoam things are improving.I will check on a double dose of remicade if things get bad though.

Minners, it sounds like we are in the same place regarding the time we have both been on remicade. As I mentioned, I am supplementing with cortifoam and that seems to be helping. I think the key is to keep an eye on things and not assume the the remicade is all we need.it sounds like you are also doing the same thing with the re-introduction of enemas. Hope it works for you.
Posted 5/25/2014 2:55 AM (GMT 0)
Lr21, I'm encouraged by your post. Does your insurance cover Remi every 7 wks? Mine would only do 8 wk intervals after loading.
Posted 5/25/2014 4:33 AM (GMT 0)
I am on 3rd loading dose.

Not improving much. Only urgency. And old lessened.
Hard to tell if remicade or steroids are doing the good.

Prednisone never did anything, good or bad, until I started remicade.
then I got all the side effects... so its hard to tell if I was suddenly getting thd benefits too... or its the Remi.

Second dose and no steroids: urgency became major and blood returned.
Third dose and Uceris: blood mostly gone and urgency improved. Still frequent. And tenesmus is so painful.
Posted 5/25/2014 4:58 AM (GMT 0)
Hi! I was on Remi before it was approved for UC. Thanks to a great GI, he got me started on Remi as soon as possible. Five years later and two clear scopes, I went off the Remi, and onto maintenance meds. I think I've been on the maintenance meds for about three years now and still feeling really well! Best of luck to you!! :-)

Carol
Posted 5/25/2014 11:28 AM (GMT 0)
Contentprof, yes I have been able to get it every 7 weeks so far because it wasn't lasting the full 8 weeks.

Embersglow1, hang in there. Even though I have felt much better on remicade, this last infusion is what actually seemed to help the most. I did stop taking all the other suppliments and the VSL right after the infusion just to see if they were causing me problems. I think the VSL was increasing my symptoms. So far so good.

Lonnie, that is excellent news. I bet it was a hard move to get off of the remicade when it was working so well. I guess it was able to heal you enough so that the maintenance drugs can now manage things on their own.
Posted 5/26/2014 2:20 AM (GMT 0)
I had my 3rd infusion yesterday and have only felt a very slight, mild improvement. My GI doc said he will test for antibodies if there is not improvement following #3. I mentioned that to the nurse at the infusion center and she seemed a bit surprised. Seems like testing for antibodies is something that happens after several infusions in her experience. Hoping relief comes soon....
Posted 5/26/2014 11:39 AM (GMT 0)
Hey Mudshovel, I wasn't doing that great after my third infusion either. I definitely had improvement, but no where near what I wanted it to be. Once they do the antibody test, would you let us know the results? Be careful with the VSL #3, it was causing me to be miserable in the mornings. It works differently for everyone, but it was not good for me. Best of luck with your future infusions.
Posted 5/26/2014 9:36 PM (GMT 0)
I'd say 3 infussion is still early in the game and not an indication of antibodies...

The way I approached it was.. if i had similar damage to external body part (e.g. say severe road rash on arms.... ) I would not expect to be all healed and looking like new in a matter of weeks... It would take months. So i was ok with letting my body slowly heal and repair itself.. and slowly each symptom went away too.... 1 year later. though I feel 100% better, mentally you still expect the other shoe to drop! some times more than others.. but it takes along long time to trust you body again.
Good luck everyone!
Posted 5/26/2014 11:26 PM (GMT 0)
Lr21, yes -- it was absolutely terrifying for me to go from the Remi that worked so well to maintenance drugs. It took me almost a year to decide. I had a reaction to it twice, and that helped my decision. I tried to have the mindset that the Remi did it's job, and now it time to move on. I'm grateful for each day I'm in remission and feeling well! Thinking about you, and hoping the Remi works well for you.

Carol
Posted 5/26/2014 11:30 PM (GMT 0)
Thanks Lonie, I really do think it's going to do the trick. Like Canadagirl mentioned, it is just going to take some time for the healing to happen.
Posted 5/27/2014 4:47 PM (GMT 0)
Canadagirl- hello from a fellow canadian! Where are you located?

I am feeling very discouraged with my Remi experience. Did you keep up the double dose after your second infusion? Are you on any other supplements (probiotics?) or diet restrictions?

I wanted this to work more than anything and not sure when to give up hope and explore surgery.
Posted 5/28/2014 1:27 AM (GMT 0)
Hi everyone! Same with me Contentprof, I read this forum when I was very ill and it helped me begin this line of therapy when I was very scared but other options had failed! Got my life back too; on my seventh infusion so far and doing very well with 1-2 BMs a day and no blood or pain. I can of course tell that things are not the same (have looser BMs every few days, they also took a few months to look relatively normal in color etc., sorry for the TMI), and as of my last scope still have some minor inflammation, but am very thankful to be better. I am sorry to hear from some of you that it hasn't been working as fast or effectively as we would have wished, and you're in my thoughts. I know on the med information it states that some people take a couple infusions. Echoing what has already been said, it really does seem like everyone's response is individual, and I think we may also vary in the levels of inflammatory cytokines we secrete based on our disease type and individual genetics. I'm no expert, but I believe this is why anti-TNFs work for some and why they are trying to develop other medications to work against different targets to help others who don't respond as well.

Funny you mentioned that Lr21; right before my fourth infusion, I had some minor bleeding and loosening a little after the 6 week mark. I ended up still getting my infusion on the 8th week and since then have been able to make it through 8 weeks. But if 7 weeks works better for you, I've heard that too!

Just a question to those that happen to see this - for those of you that haven't mentioned it in your signature, is anyone taking AZA, 6MP, or MTX concurrently?
Posted 5/28/2014 7:23 AM (GMT 0)
Quick question about remicade, how do you know if it works?
I'm pretty sure I can only take the infusion while I'm in remission, otherwise it would be pretty hard to go to the hospital without going to the bathroom in the middle of the car trip...

Anyways, if you're in remission while taking it, how could you know if it works?

Also, how many people get into a flare quite soon after taking it?
I've read that this is quite frequent, and I'm honestly scared to take it now thinking I'm going to flare up immediately.

And will it affect your body in the longrun? I've heard of things such as turberculosis and colon cancer being caused from this. How dangerous is remicade?
Posted 5/28/2014 7:45 AM (GMT 0)
You know it's working if you go into remission and stay in remission.

If you're incontinent, you can use an adult incontinent pant for the trip. Once there, you just go to the bathroom with your IV in tow.

I've not seen anyone flaring from the Remi. If it doesn't work and you have weaned off Pred, you might have a flare, but that would happen whatever meds you were taking if it was the Pred keeping your symptoms down.

Remi does not cause TB. If you already have the bacteria in your body but it is inactive, taking Remi or any other immunosuppressant can cause it to activate. That's why you get a TB skin test/chest x-ray every year.

Remi has been associated in a miniscule percentage of cases with development of lymphoma. These incidences were when the person was on Remi and another immunosuppressant such as 6-MP or Azathioprine. No reported increased incidences of any other cancer.

I was on steroids for three years and still suffer daily pain and disability from the side effects of these even 8 years later. Azathioprine had to be discontinued within six months because it elevated my liver enzymes. In 8 years with Remi I've had no side effects. There is no drug, either pharmaceutical or homeopathic, that is without side effects.

Unfortunately we sometimes have to make difficult choices, and people have different viewpoints on this. Some people wouldn't try a biologic no matter how sick they were; in my case my quality of life was zero so it was an easy decision.
Posted 5/29/2014 1:08 PM (GMT 0)
Judy2, are you taking any thing else for UC along with the Remicade? I am also taking Asacol HD at the max dose. My doctor mentioned that it was good to stay on both. After I read a recent post by therearemiracles, I'm now wondering if the Asacol may be causing me not to recover completely with the urgency.
Posted 5/29/2014 1:27 PM (GMT 0)
Lr21, in my case, the dr. took me off of Asacol right away. I still was taking Azthiriopine (Imuran) with the Remicade until the warning came out about a possible lymphoma link when using the two together. Then I continued on with just Remicade for the next few years with no issues.
Posted 5/29/2014 1:34 PM (GMT 0)
Lonie, for some reason my dr wanted me to stay on it; said something about synergy with taking both. I guess I could drop the dose and see what happens. What do you think? Is anyone else on Remicade also taking something like Asacol?
Posted 6/1/2014 5:42 AM (GMT 0)
Does anyone know anyone close to them or anyone they've heard of suffering any serious side effects from the Remicade?

I'm just still scared to take it.
Posted 6/1/2014 6:13 AM (GMT 0)
Remicade has made me better I suppose but I'm still very sick. Honestly can't say it has helped but it seems to suit me better than the Humira. I'm onto my 12th infusion.
Posted 6/1/2014 8:01 AM (GMT 0)

Lr21 said...
Is anyone else on Remicade also taking something like Asacol?

yeah, I am taking lialda lr21.

Sugarcrave said...
Does anyone know anyone close to them or anyone they've heard of suffering any serious side effects from the Remicade? I'm just still scared to take it.

Sugarcrave, what about remicade scares you? You need to weigh the risk versus the benefit of taking remi. Remi has statistically rare side effects like lymphoma with a 6 in 10,000 (or 0.006%) rate which is hardly something to worry about. The benefit is 60%+ of uc patients improve after taking remi. Infection risks are increased while on remi and immunosuppressive meds simultaneously. I haven't had any since I started, but others have got uti's or other things like that. You don't have to become a germophobe or anything, I'm an outdoorsy guy and always getting dirty lol. You basically have to be more vigilant if you suspect you are coming down with something then see your primary care physician.
Posted 6/1/2014 11:32 AM (GMT 0)
My understanding is also that the lymphoma risk is more so for young males for some reason..

As for the germs.. I work around preschoolers and they are germs on legs.. (lol) but I honestly feel healthier than I have in years... I think I had one quick case of the sniffles in the fall... but that is it. I would take anything major symptoms (such as high fever) much more seriously now that I'm on Remi and I've probably increased my hand washing a bit and I'm more aware about potential germs but it really hasn't changed my life or stopped me from doing anything.

It is a SCARY choice at first but if it works for you... you will soon wonder why you were so worried. For me the struggle was more about climbing the ladder of meds and thinking.. oh no, if I'm already at the biologics level.. what is left. so i resisted for a while... but between that and surgery, for me it was a no brainer to give it a try.

My GI told me I could drop the Mezavant (5ASA) as soon as I was on Remi. He likes to compare it to a water pistol vs. fireman hose... I was happy to drop the daily handful of horse size pills! although it was a security blanket for me so I weaned myself off slowly (with his approval but with no real need to do so other than my peace of mind).

And although this was never confirmed medically, a little part of me wonders if after 7 yrs on 5ASA I had perhaps built up an intolerance for it as I felt it may have been contributing to some of my symptoms! just a thought..
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