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Low immune system... starting on Remicade

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Ulcerative Colitis
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Posted 2/23/2015 10:05 AM (GMT 0)

Hi All, this is my first time on this forum... or actually any health forum and actually cant believe ive resorted to this. I am tired and exhausted of my UC and i guess need guidance and assistance from those in the same boat with me.

Was diagonised with UC around 3 yrs ago and the son of a gun doc didnt explain anything just said i need to take medication for a long time. Had a beautiful healthy baby girl a year later, thankfully all well with that. After delivery though i started with a relapse of UC and was on steroids since July until December last year, between which i changed doctors to get a different opinion. The new doc put me on Imuran; which i think worsened my normally low immune system at the end of which was hospitalised for a week in Nov for pneumonia. Stopped with Imuran and continued with prednisone until end of Dec. Towards Mid-Jan this year however, started to develop symptoms again and have just done another colonoscopy to re-look at by GI tract with the new doc and he tells me that i am completely inflammed. Has put me back on steriods and will be putting me on Remicade after a couple of weeks.

I am completely worried now, coz i have a naturally low immune system and Remicade is also an immuno-suppresant and like Imuran,i will be back to scratch again. Also all the side effects of the drug has also got me worried; especially the cancer part of it whether with the risk of UC or with the use of Remicade.

I am exhausted with this disease and the constant trips to the toilet and cannot understand for the life of me how i got it.

Basically need to know if anyone with an already low immune system and on Remicade and any effects as such with using the drug??

and how probable is it that one could get cancer with UC?

_____

3 gms of Pentasa daily

40mg of Prednisone daily

soon to be on Remicade (dreading it already)

Posted 2/23/2015 12:29 PM (GMT 0)
The overall prevalence of CRC in any UC patient, based on 116 studies, was estimated to be 3.7% CRC is more the most likely in patients based on extent of uc (who have their entire large intestine affected by uc), and after the second and third decade of having uc.

Remicade is an immunosuppressive medication but it is very different than Imuran. Imuran lowers your bodies white blood cell count causing less inflammation in your large intestine. Remicade is a bioengineered protein that blocks another protein in your bloodstream that would otherwise cause inflammation.
Posted 2/23/2015 12:37 PM (GMT 0)
Have you been diagnosed with some kind of low immune system or are you just saying that because you have always gotten sick a lot? Please read the resources thread at the top of the page. Are you taking any probiotics, supplements, or doing any diet changes? They help many people and some have real science and studies behind them. Almost all of us do better on some kind of probiotic.
Posted 2/23/2015 12:43 PM (GMT 0)
I am sorry sad and troubled! It really sucks and we all know how you feel. I am considering 6mp as well, and seeing a second GI today.

You didn't do anything to get this disease, but maybe like a lot of us you were crammed with antibiotics as a kid? I am sure that is my reason, or at least part of it.

Good luck and keep us posted.
Posted 2/23/2015 1:27 PM (GMT 0)
"Hi All, this is my first time on this forum... or actually any health forum and actually cant believe ive resorted to this. "

huh ? are we that bad ? i mean, ya, we do talk about pooping and farting and blood and hemmies , and all that, but we're actually quite hospitable about it -

hope things get better for you -
Posted 2/23/2015 1:49 PM (GMT 0)
Hey just stud, sorry that I made the forum sound like a bad thing. Didnt mean it like that. Just that i never expected to have something like this that wouldnt be healed by a doctor and would need me to look for alternative means of finding solace in this condition.

thank you all for your comments.@garylouisville: I do usually fall sick very fast just by being around someone that has a cold and that was the basis of my statement above. That was the first thing that struck me when i saw the effects of using Remicade or Imuran for that matter. I have a one year old baby girl and do not want to keep getting a cold and being prone to passing it onto to her everytime.

@iPoop: Thank you for your CRC figures. it just scares me to know that i could be prone to getting it.
Posted 2/23/2015 2:59 PM (GMT 0)
Thing is, with some immune suppressant taken with the Remicade, it is likely to only work for a year or three. Many people form antibodies to Remicade, and it stops working.

Please discuss this issue with your doctor.
Posted 2/23/2015 3:02 PM (GMT 0)
Our CRC odds are fairly low, and screenings are adjusted accordingly. CRC is fairly slow moving, and with the standard screening routine we have, you should be fine. If you uc limited to your rectum, your odds of CRC are the same as the general population (no increased risk).

If you are more prone to getting sick, then take extra precautions. For example, be more vigilant about washing your hands and thoroughly. Use hand disinfectants. And try to get out of the habit of touching your face, especially around the mouth and lips, if you tend to...
Posted 2/23/2015 3:06 PM (GMT 0)
I second iPoop's information on Imuran vs Remicade. Two different drugs with two different reactions within your body to the target the inflammation. Don't think that one will be the same on your body as the other.

I was on 6 mp (sister drug to Imuran) back when I was first diagnosed. I had to stop it because of the effect on my liver enzymes but the time I was on it I did not feel well. Just an overall tired/down/nauseous feeling. But thats me.

I started Remicade a little over 2 weeks ago. I know how you feel about dreading it. I dreaded it from the minute I knew there was a possibility I could be on it. But in all seriousness its not bad. I am 33 weeks pregnant and started flaring at 26 weeks. The flare got out of control and prednisone along with my other meds wasn't holding it. So under my circumstances I didn't have many options and preterm labor was not something I would put the baby through. So far I have had no reactions during the infusion, no side effects accept for a mild headache after the infusion and I can say that there have been slight improvements already. I have my last of the loading doses on 3/17. And I actually look forward to the infusion. A little over 2 hours of quiet and reading a book.

I have a baby on the way and a 2 1/2 year old at home. All I want to do is be healthy for my kids. I missed Christmas and New Years because of being hospitalized for the flare. I don't want to lose anymore time. I'm optimistic about Remicade and getting me in a solid remission - crossing everything I've got for not having a post partum flare.

This disease is a rollercoaster - emotionally, mentally and physically. Keep your head up. Nothing is ever written in stone and maybe one day we won't need to be on the Remicade. But for today...get healthy!! And if you are not on a probiotic you should definitely look into them...

And the people on this forum are a HUGE support. They have years of knowledge and insight. It helps keep me going in the worst of the "crapiness" ;)
Posted 2/23/2015 3:16 PM (GMT 0)
Welcome to the forum.

Didnt mean it like that. Just that i never expected to have something like this that wouldnt be healed by a doctor

As depressing as it sounds, doctors are there to help manage symptoms with medications. They cannot do much outside of that except give assurance that you will be fine. When they don't have the solution, the answer by default is to take the colon out. I am sure you will realize this fact after running through the loops for a few more years, and I want to save you the trouble. They cannot heal UC anymore than a band-aid can heal a wound.

The imperative here is finding a doctor that will work with your immune system issues, as immunosuppressants and biologics do compromise immune activity. I think guiding your own care is very important. You have to make the best possible decision for yourself, going by the best information available. The up to date data says that there are many things one can to do alleviate UC.

The good news is that you have this forum, which is a vast repository of information. It's always in the realm of possibility to rebuild immunity. For starters, there's a strong connection between decreased bacterial diversity and autoimmunity or any immune malfunctions. If have taken even one antibiotic course in the past, chances are your bacterial diversity has been compromised. Probiotics can be one way to build up the immune system.

I encourage you to use the search feature for things like the probiotics, paleo diet, curcumin, LDN, fecal transplants, whey protein, kefir, fermented foods, resistant starches.

Good luck.
Posted 2/24/2015 12:12 AM (GMT 0)
I've been on remicade for over a year now and (knock on wood) I think I've been sick once, but it wasn't any different than being sick before. I don't know if I take better precautions now or what. I wash my hands a LOT and I try to stay away from people I know are sick. Even working with preschoolers every day I managed to stay well.

As far as the cancer goes, I wouldn't worry a ton about that. You are monitored so closely while on remicade with blood tests, doctor's appointments, physicals, etc that if you were to develop cancer, it would be caught pretty early and treated quickly. At least that's what I tell myself. For me, I didn't really have a choice. My UC was so severe and I was intolerant to everything else it was either remicade or humira for me and the thought of giving myself a shot scared the crap out of me. The benefit of no longer being in pain WAY outweighed the (tiny) risk of getting cancer for me. I actually cried tears of happiness when I was scheduled for my first infusion.

You just have to ask yourself if the benefits outweigh the risks for you. If someone told you that there was a drug out there that could eliminate all your symptoms to the point where you and the people around you don't even know you have UC, but there was a very small possibility that you could get cancer would you do it? Because that's exactly what remicade did for me. I love it. I was in the worst pain of my life before remicade. Not everyone has the same success, but for me, remicade was a miracle.
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