Long term effects of Remicade

[Squadinho]

Well I'm having my first infusion tomorrow, and for some reason I'm dreading it. I was far less nervous about my colonoscopy!

I'm not worried about the actual infusion. Things like that don't bother me, I'm more concerned about the long term effects its going to have on my immune system.

As I understand it, TNFa is a major part of the immune system, and Remicade stops TNFa from working, in turn suppressing the immune system. I'm really concerned about how much more vulnerable this is going to make me to things like chest infections and colds.

I'm already on 150mg of Azathioprine and had a terrible chest infection a couple of weeks ago which I've only just got rid of, which I've put down to catching when I went out with friends for the first time in 5 months and I feel as though I'm losing my friends because of it.

I'm really concerned that if I don't keep my social interactions to a one on one basis that I'm just going to be constantly ill with colds and / or other infections all the time. How do you guys cope with this?

Also, I'm having 3 infusions. After the last one, how long does it usually take for TNFa to re-establish, or is it suppressed forever? I understand that some of you guys have regular infusions so I'm guessing that TNFa does re-establish itself.

Bleh, probably worrying over nothing.

 

[My Butt Hurts]

The way I see it (and I could be completely wrong) is that my immune system is overactive, and the Remicade levels it out to normal, doesn't make it underactive.
I've been on it for 2 years now and haven't noticed any increase in colds or anything else. My kids have even had viruses that I snuggled them through that I didn't end up catching.
I personally think a trip to the grocery store is way more dangerous than hangin out with a group of friends, germ wise.
I look forward to my infusions because it's 8 more weeks of feeling fabulous, hopefully. Good luck tomorrow, I hope it works for you as well as it does for me!
MBH

 

[Becky]

I have been on it for 3 yrs and also have not noticed increase in colds. I also have 2 little kids and they have been sick I have not gotten it.

Good Luck!

 

[Squadinho]

The way I see it (and I could be completely wrong) is that my immune system is overactive, and the Remicade levels it out to normal, doesn't make it underactive.

That's a good way of looking at it, a lot more positive than my way.

Thanks very much you two for your replies, helped ease my mind a little.

I'll report back, sure it'll all go fine though.

 

[effdee]

I was on Remicade for a little over a year and it didn't make me get sick more often.

 

[Fourlocos]

My son has his second infusion last week and has tapered down to just 5mg prednisone this week and is feeling quite well. He has had no problems yet with infection and did have a flu shot before starting the process. He is new to crohn's but so far things are going fairly well. Go for it!

 

[Mountaingem]

I've been on Remicade for 4 months, so far I haven't noticed any increase in sickness at all, and I'm also on Methotrexate, which is a chemo drug.

When I was on Aza, I definitely got sicker more frequently, but I was only on it a few months when I had a severe allergic reaction to it. Remicade is much different to me, I get no reactions to it at all, and I always felt sick when i took Aza.

My GI told me that pred is a way scarier drug long term than Remicade.

 

[Squadinho]

I was speaking to some people this morning when I was having my infusion and they were all very positive about the effects Remicade has had on their lives and they also haven't noticed an increase in infections or anything.

Once again thanks for putting my mind at ease.

 

[Jennjenn]

I was on Remicade for a while and never got colds or the flu. I had to stop taking Remicade within the last few months and just last month came down with a horrible flu and cough that lasted for a while with medications. It was something very difficult for me to go through as my symptoms for Crohns are active and dealing with both was not fun at all! I felt like one thing the Remicade did do for me was help my immune system. Before I stopping the Remicade I never got sick (cold or the flu).

 

[Pam]

I have been using Remicade for just over eleven years with wonderful results. I can only count on one hand the number of times i became sick over that eleven years. I taught school and worked as a paramedic...can you imagine any two worse environments to pick up germs? I worked with two rules: never toich your face with your hands and constantly wash your hand up to your elbows. I was staying healthy when everyone else was sick.

 

[Mrsfillys6]

Hi, I have been on remicade for about 4 years now, every 8 weeks. I have 0 side effects other than being tired after the infusion. This drug works wonders and also being a teacher I feel I am sick less than my colleagues . Good luck!

 

[Mrsfillys6]

Hi, I have been on remicade for about 4 years now, every 8 weeks. I have 0 side effects other than being tired after the infusion. This drug works wonders and also being a teacher I feel I am sick less than my colleagues . Good luck!

 

[kiny]

I have only been on it a few months long ago and long stopped.

Infliximab has more than one effect. No one had a clue what infliximab did when they started using it, they knew it lowered TNF-alpha and that was about it, they had a lot of preconceived notions of it's mechanics but many turned out to be wrong later on.

Infliximab interacts with monocytes (a type of while blood cell) , it interacts with a TNF-alpha receptor and is able to reduce TNF-alpha load, not TNF-alpha release, it also increases expresison of IL-10 which is an antiinflammatory.

As for your "are these things permanent". No they shouldn't be permanent, leukocytes and even memory T cells get changed. I do think the effect of infliximab lasts much longer than people think, the half-life of infliximab is 10 days, but the effects on the immune system would be something that could last months I believe, lymphocyte for example double quite slowly.

T cells balance each other out, I think if someone stayed on it for years maybe it would have effects that could last long after discontinuation, it might balance T cells one way or another and if someone stayed on it for years, I think it could take a while for those effects to change back to normal.

I believe this is where the highest potential risk is from infliximab, when T cells go one way or the other, and there is an increase of particular T cells, when a few of those T cells are malignant, people get the lymphoma cancers. Normally T cells tend to balance each other out, but infliximab in some people (especially very young people) shifts T cells one way or the other and if some of them are malignant some people get a rapid growth of malignant T cells as a result.

It's only recently they found out how infliximab actually works, a lot of studies were wrong at first, or incomplete.

 

[nogutsnoglory]

It's great to hear that people aren't finding increased susceptibility to colds on remicade.

What about those of you on remicade and methotrexate or 6mp? Do you also find you are not getting sick?

 

[kiny]

The way I see it (and I could be completely wrong) is that my immune system is overactive, and the Remicade levels it out to normal, doesn't make it underactive.

People with crohn's disease tend to have an immune system that is underreactive. The first studies that found that used used harmless bacteria and checked how fast these bacteria were cleared in people with crohn's disease compared to controls, turns out people with crohn's disease were much slower than controls.

Later they discovered why this is, genetic predisposition in crohn's disease involves the NOD2 gene responsible for bacterial recognition, the ATG16L1 one, used by the NOD2 protein to signal autophagy, there are often deficiencies in vitamin D receptor gene, and a whole number of other genes that point to immune deficiencies.

What does happens is that a lot of leukocytes and cytokine are present in the intestine of people with crohn's disease, perhaps the adaptive immune system compensating for innate immune deficiencies.

People with crohn's disease tend to be vulnerable to infections, regardless of medication. In fact the slight increase mortality in some people with crohn's disease is attributed to increased infections in some studies, not to crohn's disease complications.

 

[kiny]

I just realised how old this post is.

 

[Mark in Seattle]

Later they discovered why this is, genetic predisposition in crohn's disease involves ....there are often deficiencies in vitamin D receptor gene....

kiny,

Is there anything more you can say about this "deficiency in vitamin D receptor gene" to help me better understand what that means? I've heard of course the idea that IBD folks live in northern lattitudes and are deficient in vitamin D, but this is the first time I've heard anything about a deficiency in a vitamin D receptor gene. I'm interested to really understand what this is about. thanks.

 

[kiny]

kiny,

Is there anything more you can say about this "deficiency in vitamin D receptor gene" to help me better understand what that means? I've heard of course the idea that IBD folks live in northern lattitudes and are deficient in vitamin D, but this is the first time I've heard anything about a deficiency in a vitamin D receptor gene. I'm interested to really understand what this is about. thanks.

It's the VDR gene (Vitamin D Receptor), it's mutation is associated with crohn's disease (still a relatively small chance just like every other predisposition for crohn's disease, but it's an association that's been shown many times).

Vitamin D can induce autophagy which is needed for bacterial clearance.

The North-South gradient is kind of interesting no, but in Europe the South seems to be catching up with the North just fine, it evens out now in many countries. Then again, I read some study that in Canada itself you can make a North South grandient, people in the North of Canada have more crohn's disease than in the South, it wasn't a huge difference, but it was there.

 

[kiny]

All of those associations with genes are incredibly small though, if you read the studies you would think that it's all down to the genes, but if you look up the actual percentages it's often ridiculously small.

Even NOD2, where the biggest association is, I could be wrong, but I believe it's like 10% association in the West and no association in Asia.

Genetic research as a whole has been a bit of a failure, tons of money wast spent on genetic research and for many diseases they find no association, much research lead nowhere and one of the very few diseases that are of interest is crohn's disease, that's why so much genetic research comes out for crohn's disease. Genetic studies were going to change the world and cure diseases, but the whole idea fell flat on it's face, nothing like that happened, so most researchers converged to diseases where there might possibly be a benefit, like crohn's disease. The genetic research for crohn's disease hasn't really led to anything so far. Well, I don't feel it has.

The first studies that showed NOD2 and ATG16L1 and mycobacteria and VDR genes were interesting, but now they are looking over genes with a 0,001% chance and trying to decipher loci that probably have nothing to do with crohn's disease, it's not very helpful. It's a lot of money down the drain.

 

[Hope345]

Good to know that we should not expect more colds or flu's, but it is obvious that long term use of Remicade is not to be taken lightly.

I am not sure when it is time to stop.
Hopefully we will know.

thanks for all the input everybody, it has been helpful to me too.

 

[Mark in Seattle]

Thanks kiny, I had never heard of this mutation.

I do suspect that vitamin D plays a role. I know that when I supplement with vitamin D it has an immediate and profound effect on ameliorating my burning larynx pain that is caused by drinking coffee or tea for example. The D seems to turn on my tissue's ability to produce a soothing mucus. I just wish I could get enough D to produce lots of soothing mucus in my gut, but so far I've not been able to supplement enough to make that happen.

I never had bad CD like this til I moved to cloudy Seattle - can't locate the sun for 6 months out of the year. Of course when I contemplate quitting my job and moving to a sunnier clime, I ask myself why there is Crohn's in Hawaii or, as you mention, Saudi. When I read the studies about those places though, it seems to indicate that everyone spends their time indoors out of the sun, so even though they have access to the sun, they don't take advantage of it.

I totally agree about the genetic studies - they're interesting to a point, such as NOD2 etc. telling us that there's a bacterial clearance story. OK, so maybe then look into ways to more effectively clear out bad bugs (AIEC, etc.). I wonder who pays for all of those studies and why.

Thanks for the info.