Remicade and my stupid ileum...

[Jackie]

Two things:

First treatment of Remicade next Thursday 9/27. Please tell me of your experiences...am scare of side effects, but also curious about relief. Would REALLY like to hear your stories.

Anyone do a pill cam or small bowel series and that is how they figured out your ileum was bad news? I had a small bowel series and nothing came up, but since he couldnt get into my ileum valve thingy (techno, I know) when he did my colonoscopy, he did the pill cam. Ugly in there. Tons of swelling and massive ulceration. But he wants to get under control my ulcers that are in my mouth, backside parts and my terminal ileum. Then he wants to see if it is scarred enough to think about taking out....my ileum.

Got any good ileum removal stories?

 

[ltordo]

Hi Jackie,

I received my first Remicade infusion this morning, and had no reactions at all.
Not even an itch. They gave me a pill of Claritin first.
The infusion itself took about 2 hours and 30 minutes.

They said I may be tired afterwards but I wasn't, I was staving. So
I went and got pizza, then went to Walmart, then went and got a
haircut. I still feel no fatigue as of yet.

So for me the wait, and thinking about receiving Remicade was
worse then the infusion itself.

My disease is in the large colon and rectum, and it is fistulizing Crohn's.
I am not flaring at the moment so I won't know for a while if
the Remicade is working or not.

Lynn

 

[vickyoddsocks]

I've been having it for a couple of years and have never had any side affects what so ever!

 

[Shoeless]

I haven't taken Remicade yet, but i'm told I will start the 29th of Oct. I have had my illium out since 99. I have to get B-12 shots monthly. My insides have begun to eat there own pathway again,and things aren't going through the right way. Not having it Fatigue is huge. B-12 helps you will know when you need it. You can always PM me if you have any questions.
Thanks

 

[mle]

Hi Jackie,
Almost a year ago they removed about a foot of my small bowel including the terminal ileum and the "valve thingy" (can't remember the terminology either).The first couple of months I had once daily diarrhea but other than that, it wasn't bad. The doc said that since there was no valve to regulate the bile that it was normal and that the body adjusts to this after a while. They were concerned about my b-12 absorption but blood tests say I'm doing fine.
In the case of my surgery I really had no say in the matter because they thought I had appendicitis (I hadn't been diagnosed with Crohn's yet) and when they went in they saw all kinds of nastiness, stricture, and perforations. Turns out my appendix was fine but they removed it anyway, which I'm glad of, one less thing to worry about.

Good luck with your Remicade injection! I've heard it can really do wonders.

 

[soupdragon69]

Hi Jackie,

I have had 4 infusions so far of remicade. Get a bit tired and cold during it but just tend to sleep and the nurses give me blankets. No other problems. Am tired for a few days after it and then over the next 10 days really start to pick up.

Find that about 2-3wks before my next one I start to nosedive again, but am seeing my gastro cons tomorrow so will see what he thinks. He may adjust the time between them a bit or leave it at 8 weekly.

Have to say it has made such a vast difference to me I am actually for the first time in years feeling like my old self again and getting my life back together.

Yes I agree when you read up on it it can be scarey but then you need to decide where you are in the " cycle" of Crohn's and how much it impacts on your life....

Keep us posted on how you get on and any thoughts or concerns etc you have yourself.

Thinking of you - know how hard it is...

 

[Jackie]

I am going to try and keep a diary about how well I do (or don't do) on the Remicade. I know that I am SOOOO grateful to read about others experiences good or bad. Thank you all for your stories.

Soupdragon - how often do you go in for your maintenance and what were the intervals on your first infusions? Two weeks apart?

Itordo - how are you doing now?

 

[Mazen]

Hi Jackie. Well, I have mine in the trerminal ileum also. and also they couldn't reach it with colonoscopy because they couldn't get through the inflamed ileocecal valve (I think this is the name for it ). So they did a CT scan and a small bowel follow through and thus diagnosed Crohn's. I once asked my doctor about the cam pill and he said it's not advised in my case because it may get stuck in my tightened ileum .....

As for Remicade, I'm not there yet. But last month I had a wicked flare (massive pain in my ileum, I thought I was dying) and now am back on Prednisone. The doc says that after I finish the prednisone , if I don't go into remission then Remicade or surgery to remove my terminal ileum is the next step..... Hope the prednisone works and good luck to you too...

 

[soupdragon69]

Hi Jackie,

My infusions were what they call 0,2 and 6 wks apart. So the second infusion was 2 weeks after the first and the THIRD infusion was 6 weeks after the first. These are known as loading doses to get it into your system. They may have a different way of doing it where you are but wont mean you get any less benefit.

Currently I have it 8 weekly but the gastro team said they would adjust it according to how I responded. They told me most folk have it 8 weekly here in the UK but they can "tweak" it anywhere from 6 to 12 weekly.

I see my GI this afternoon so will know more then as to time spans between.

The other thought that springs to mind is after my first infusion I was a bit wobbly on my legs. Felt fine during it but noticed I was unsteady and a bit drained when walking back to the car.

They run the IV over 2hours generally and you need to stay 1-2 hrs after it to be observed and blood pressure, pulse, temp checked - which they will do at regular intervals whilst you are having it too.

Take something to read and some headphones if you like. I usually take a bottle of water and some nibbles too and pamper myself a bit ;-) I dont have anyone to go with me at present so drive myself there and back. Try and get someone to either stay with you or do a drop off and pick up too til you know how you will react with the first few infusions.

Some folk really turn around in a few days Jackie and feel fantastic my GI team have said. I didnt notice anything after the first. After the second I picked up after a few days then nosedived big time 10 days later and ended up in hospital for 2.5wks. Turned out I had severe IBS on top of my Crohn's and some strictures ggrrrr. Had my third infusion a couple of days after I got home from hospital and havent looked back since. My fourth was Sept 4th and really see a vast difference now. I know my GI plans to keep on the iv's for the next year and then review things again.

I remember the first day, the first infusion and looking up at the bag hanging on the pole and it dripping and thinking about each drip going into me.... had very mixed feelings that day, was upset that I was ill enough to need it but very glad there was something that may well help me get my life back after all these years of suffering. I know its not for everyone and doesnt work for everyone - I am just grateful it has for me.

I know alot of what I have said is a ramble - just thinking out loud about my experience. Sometimes though its not just having the actual iv its also the little things that make it easier to cope and ease the stress.

Feel free to PM me anytime ok? Will help in any way I can if you want to talk..

Thinking of you.

 

[TammySue62]

Hi
I have been on Remicade for years with no side effects.
It helps slow down the drainage of theses darn fistulas
for about 5 weeks then I have to wait another 3 weeks
before my next infusion. Can only have it every 8 weeks.
TAMMY:yrolleyes:

 

[MarkyB]

Thanks Jackie for posting this.

I too will be starting Remicade, (the first lined up for the beginning of November after I have been checked for TB and taken Azathioprine to lower my immune system). When you first read up on this you do start to wonder what the long term effects might be. I am still very concerned BUT reading what others have had to say on here who are taking it gives me hope that I can have my life back.

My Crohn's was bad enough, then I started with Arthritis, and now I have got Kidney Stones (from being dehydrated!)

To think that this drug could put paid to all of this (apparently Remicades has been used on Arthritis suffers for longer with good results) and give me some normality is what is keeping me going right now! (Sounds awful but I am counting the days till my first infusion - the light at the end of the tunnel - fingers crossed)

Let's hope we both benefit!!!

 

[soupdragon69]

Marky,

I suffer alot of really painful muscle and joint pain and stiffness every day. Cant lie on my side in bed at night or tolerate the weight of one leg on top of the other and the pain wakes me frequently.

Since having the infusions I am now having several weeks with minimal or no pain or stiffness and find the last 2-3 wks prior to my infusion that it all starts to return and by the time I reach infusion day I am having problems walking any distance again.

You are very right that they use it for arthritis suffers with good results.

Really hope it works for you as much as it has helped me and more!

I saw my GI last monday and he has told me my crohn's is so severe he is concerned that I may deteriorate quickly at any time still so wants me back in clinic to see the specialist nurse on 10th Oct then to see him again after my next infusion at the end of Oct.

He has also increased my Imuran saying that I am not into remission yet and need some meds tweaking. He told me that I will be on remicade for at least 2yrs now and he will leave it at 8wkly for now but may change it to 6wkly depending on how things go. Then after the 2yrs it will probably continue. He was telling me the main thought now through research is to continue the infusions and reduce the Imuran when possible and only increase it if flares occur so they have some leaway meds wise to support us. Interesting eh?

Anyway Marky, really hope you get the results you desperately need. Let us know how you get on.

Thinking of you

 

[Jackie]

Hi Marky B!

I want to say thank you SOOO very much to everyone that posted and has talked me through this. Remicade has been very, very worth it. I had my first infusion on Thursday, this is Sunday and what almost non-stop Prednisone and Entocort have not been able to do in 7 months, Remicade has done for me in 2-3 days. I have had ulcers in my mouth since February that have been mild at times, but severe at others. They never really went away though. I have also had a lot of rectal bleeding and swelling the last few months and they gave me Anucort suppositories to help with the swelling, but it never really improved it much except a little. By Saturday morning, not even a full 48 hours, my mouth ulcers started to go away and are almost completely gone this morning. Yesterday afternoon I was still bleeding a bit and this morning I am not at all, the swelling is almost completely gone and I can actually sit comfortably. My tummy still hurts in the RLQ and gets bloated whenever I eat, but I am soooooo optimistic that I will start to feel better there too. I do think the little pains I feel from time to time in the middle of my stomach are a lot less. I am being realistic that if my ileum has taken a dive, that I may still need to have the booger taken out, but I can visualize all of those ulcers along my digestion tract dissolving away and that makes me very happy!

Side Effects: Was pretty achy in my infusion arm the day of and a bit cold during the actual infusion. By Thursday night I was pretty tired and then Friday I was completely wiped out from top to bottom. Yesterday, Saturday I was still pretty tired, but not so much mentally. This morning I am still sleepier than usual but I haven't had my 8 cups of coffee yet. No lectures please. But you know (and I am sure many can relate) I think I would have let someone remove my little toe to make the ulcers and rectal pain go away.

Now how long this will last before I build up immunity, I don't know. But I DO know that I am looking so forward to the next infusions even if they wipe me out for a few days. This does bring me to a question. Regarding side effects, anyone have worse ones with the next infusions or the maintenance ones? I would like to know, even though it doesn’t really matter in many ways because I will take a few days of feeling a bit under the weather for the kind of relief I have gotten so far!

My doc told me that originally Remicade was for people with Rhumetoid Arthritis, but they noticed that people who had Crohn's along with it were getting relief as well. How cool, huh?

Keep us posted MarkyB! I want to know how well you do and please feel free to PM me anytime. People have help me so much with this. I helps a lot to talk about it.

 

[wwwchachi]

Hi, I started Remicade four years ago and made it halfway through the loading period. I moved and never completed it. My new doc put my on Remicade and mentioned there is a higher risk for reaction for those that have been on Remicade in the past. Yeah, he was right. I had a crazy reaction and had to get pumped with antibiotics, steroids, benadryl, etc. I am now on Humira and doing very well. I blog my reactions to Remicade and Humira, here.

 

[MarkyB]

Had my first Infusion on Tuesday 13th. No treatment beforehand for potential reactions just straight into it. FINE! Didn't have any problems with it at all. Felt very tired afterwards but I can live with that. Four days in though no sign of help with the Crohns and Arthritis. On to the next one in a couple of weeks then...

 

[Kev]

Yeah, I echo the sentiments of wwwchachi, altho I've not been given remicade (yet.. but it's in the cards, if current treatment fails and my GI can get me into a program where the costs are covered, otherwises it's a no go).

Anyway, back to my original point.. I'd heard that if you go on remicade, you HAD to continue taking it,,, you couldn't go off of it AND then resume it later. Thought I'd double check that anecdotal info with my GI, just in case. Welll, the 'official' word from my GI was that one 'could' resume the remicade treatment, but that the results weren't that good. Typically, the benefits are reduced, and the risk of complications, toxicity, allergic reaction, etc., all were vastly increased, leading doctors to the position that once a patient was started on it, the best plan was to continue them on it indefinitely... as the risks of restarting outweighed the benefits. So, it isn't 'absolute' that one can't resume taking it, but it is extremely risky. The prospect of taking such a treatment, and a very expensive one at that, for the rest of my life, left me feeling that it wasn't really ever an option for me.

 

[MarkyB]

Kev, here goes with another contridiction. Over here in the GB my Specialist has told me that after my three induction infusions (0, 2 and 6 wks apart) I will only get another infusion as and when I flare up. He stated that compared to the USA which will continue giving on a regular basis every 8wks or so, there seems to be no proof that this has any benefit over this as and when method. (I am not so sure) This is one area I want to clarify with him when I see him again in January after my induction treatment. Any comments?

 

[soupdragon69]

Marky,

Can I stick my tuppence in on this one as I am in the UK??

My cons told me not 5wks ago that I would be on remicade for at least 2yrs every 8wks. He said he had been in Brussels (which is apparently the european centre for crohn's) and that they are finding remicade works much better and are winding back on azathioprine to then use IT only when there is a flare impending etc.

He also said I would be on it after that but said would wait and see when we got there as to the timespans apart.

I did the same as you in relation to induction of 0, 2, 6wks. Initially they said a year but then when he saw me 5wks ago he said at least 2yrs because my crohn's appeared to be very difficult to control/manage.

So yeah, get at your consultant and see what he says because the general concensus seems to be that you are at greater risk down the line if you restart it. My gastro team have said they dont like giving it any more than 12wks apart for that reason even though the top end of the scale appears to be something like 14wks according to them.

 

[MarkyB]

Soupdragon - yes I have read both on here and elsewhere that the most benefit is for regular infusions. I think in my particular case my Specialist is trying to cut costs. From the first time he talked of putting me on Remicade cost was talked about - which he has never done before. He was also comparing Remicade and Humira as an option later, again giving cost as one reason for changing, alongside any medical benefits. It was interesting to here one of the nurses comment about my Specialist not 'prescribing' regular doses when I had my first infusion, and their view that this might not be the best way forward. I think I will have to have a serious talk with him in January. Thanks for your comments, it just shows you that even in the same country 'practices' can vary so much.

 

[Kev]

Couple of points. I'd heard that once started, one couldn't go off remicade and go back on. Checked with my GI when remicade came up, and she said it wasn't absolute. Going off, coming back on, seems the benefits are reduced AND the risk of having developed resistance/antibodies to the drug increase. So, with lesser benefits and higher risks, most docs who prescribe it prefer to go long term, possibly indefinitely.. Second point, the expense. Really costly, about $4,000 - $6,000 CDN per treatment here. My GI has a number of patients on it, all have private insurance that covers 80% cost. Odd thing is, no one has been asked to fork over the remaining 20% yet. It seems even this drug manufacturer thinks its expensive, and has a heart