How long does it take for Remicade to filter out of your body?

[dcsportsfan5]

I just skipped my last Remicade infusion because of awful side effects. Extreme fatigue, dry skin, rashes, vision issues ( I had perfect vision before the infusions), hair loss, thinning hair all over the body and scalp, sensitivity to cold, Hives, itchy skin....

I had my loading dose then decided not to proceed with my 4th dose. It was the intense hives and itching that put me over the edge. Does anyone have experience with stopping Remicade and feeling better? Do the symptoms go away? Will my vision be permanently damaged?

I'm done with medication for now, the only reason I changed was from side effects from Azathiprine and Allopurinol but it turned out I had iron deficiency anemia that went undetected because my GI knows absolutely nothing about hematology and blood function. My Iron was incredibly low which I have been receiving iron infusions for the last 2 months so that is corrected. I'm going to treat my disease holistically until further notice to let my body reset from these awful medications. When will the Remicade be out of my system?

 

[rygon]

Remicades Half-life is 9.5days according to Wiki, so going by this website it should take approx 40days for 90-95% of the drug to be removed from your body

http://www.wisegeek.org/what-does-a-drugs-half-life-mean.htm

This is just what I have collated from the web, so if anyone has has any better info I'd like to hear as I've never looked into this before.

If your GI didnt know about Iron deficiency I would probably look at getting anew GI. Its one of the most common symptoms in crohns disease, and easily detectable by a simple blood test.

Have you told your GI about stopping the infusions and the side effect you are having? Its a very dangerous drug and I urge you to say something, even if you aren't going to try it again

 

[ryansbronco]

I agree with the 40 days. My infusion window is 4 to 6 weeks.
I would caution dropping remicade cold turkey. I went cold turkey about two years ago (very bad income and could not pay medical) I felt fine for about two months and then I had a very hard crash. I ended up in the hospital for about a week. So Id call your doctor.

 

[dcsportsfan5]

Should I expect the symptoms to go away? It's been about 8-9 weeks since my last infusion but I still have some lingering side effects from the medication.

 

[rygon]

It may or may not have been caused by the drug itself. It may have been just a coincidence (however unlikely that seems). I dont think anyone here could give you a definite answer. The best thing to do is see your doctor and ask them. If they can't tell you then maybe some testing will

 

[dcsportsfan5]

I'm having a difficult time believing it is coincidental. I was feeling "normal" this summer. As normal as someone with Crohn's can be then when the iron anemia went undedicated she changed my medication to Remicade leading to the the symptoms I described above. I don't exactly trust my GI dr or any for that matter. It is difficult to find a good one because it seems most Drs refer their friends rather than someone they really trust. When I first described the symptoms they never take them seriously unless you are in the hospital.

 

[carrollco]

Be careful. I got mad at my doc and decided to go it holistically. A lot of money later I am sicker than ever and praying for a shot at Remicade. I really get how you feel, but if it comes back, please don't wait as long as I did for help. It is so not worth the pain.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.

 

[Jennifer]

Remicade can take up to six months to leave your system entirely (just like Humira). You should notice a decrease in side effects before then. In the meantime if possible, see an eye doctor and they may be able to tell if your sight issues are related to the medication or something else. With the hives and itching it sounds like you're allergic to the medication so be sure to let your GI know that you stopped it and why. Hopefully you'll find something else that works for you. Keep us posted.

Let your doctor as soon as possible if you get any symptoms of any infection so that it can be treated without delay. This applies for up to six months after finishing treatment, as this is how long it may take for the medicine to be removed from the body.
http://www.netdoctor.co.uk/skin-and-hair/medicines/remicade.html

 

[dcsportsfan5]

Oh no 6 months is scary. I couldn't imagine dealing with these symptoms for that long. The frustrating part is I believe it could have all been avoided with proper diagnoses of the iron anemia and continuation of my previous medication. In my experience you really have to be careful what you say to the doctor. For an example if you mention the symptoms and then say oh and I'm stressed/depressed they will "OH you are experiencing these symptoms because of depression..." Depression coincidentally is a side effect of Remicade...my point is they are quick to dismiss a reaction to medication. I have to trust my body and what it is telling me, not the doctor. I will definitely look into seeing an eye doctor, I had them checked out in March and they were fine.

I spoke to a friend of my neighbors who said he has had Crohn's for 30+ years now is 62 years old. He said he hasn't used medication in 20 years (was on prednisone for a long time). He is inflammation free and he said his secret is proper use of probiotics(with the proper coating), digestive enzymes w biggest meals, and avoiding certain foods when he wasn't feeling well. I might give it a shot. I've been in and out of the hospital last few years with bowel reductions, colostomy, adhesions etc. I don't have much more to lose.

 

[dcsportsfan5]

I just had a Prometheus test done which measures the amount of Remicade in your blood. And it turns out 3 months removed from my last infusion I still have Remicade in my blood!

This is frustrating!! I wish there was a way to expedite the removal of the drug, I hate this stuff.

 

[Keenie]

I have excruciating migrating joint pain caused from the remicade. . Never had joint pain prior to commencing remi.. been on remi 1.5 years every 8 weeks.. I want to go off it because im scared of my future . I don't wanna be crippled because of remicade. ..so you think 3 months to get it all out of your system .... the joint pain is very very excruciating. . Just unbearable

 

[dcsportsfan5]

Not necessarily. I'm 3in half months removed and still have Remicade flowing through my system. It might take as long as 6 months to get it completely out but there is no real way of really knowing unless you get a blood test. Everyone is different and metabolizes the drug at different rates. You might notice some improvement in your symptoms as time passes. I'm still recovering myself.

 

[StellaFunk]

Anyone still following this post? This is a lot of what I am experiencing. Wasn't sure why. Joint pain, difficultly swallowing... dry skin. Is there anything that can help? I can't live like this any more.

 

[Bufford]

I tried Remicade and had lupus like symptoms and had to stop after the 3rd loading dose. Side effects crept in after the 2nd infustion. Rectal bleeding returned, horrible abdominal cramps, chills, skin peeling from my face like paint leaving me with the Malar rash; hairloss came later, along with a pounding heartbeat. I could not keep my colostomy bag glued on, creating stoma rashes and a lot of misery.

It took well over 6 months, perhaps about 8 months later that the Remicade was out of my body. I knew when it was finally gone when I finally could keep the colostomy bag on. For some reason the glue would breakdown in a day or so of applying a new bag.

Don't ever let your GI get into a huff. They have no reason to get angry at patients for any reason. I see it this way, its my body I own it. I ask for doctors to work with me (the patient) for a reasonable treatment or solution, but at all times I remain in charge and I fully expect the doctor to take direction from me. If they do, I have a good doctor, if they will not I will find one that will.

I take this position from my life experience on the job where I had to supervise and oversee plant operations for a large boileroom that was responsible for heating and cooling an institution. There are times when we need work done by contractors and advice from them to keep the plant running. I see my doctors much in the same light as those who we hired services for on the job. Our bodies are not really that different and we must remain on guard for our own best interests. I would never accept a nanny oriented doctor.

One thing to remember is that we know our bodies better than the doctor can. They can only do so much, and it is up to the patient to do the rest. There is a lot a patient can do to help themselves.

 

[StellaFunk]

I am so sorry you experienced that. Was there anything that helped? I unfortunately screwed myself by saying I wanted a second opinion. My original doctor has washed his hands of me and just tells me to go to the ER or my primary care. Primary care says they are family practice, there is nothing that they can do. I know I need a new doctor. Was there anything that helped you during that 6 months? At this point I'm not going to be able to work.

 

[IrritableBob]

I have excruciating migrating joint pain caused from the remicade. . Never had joint pain prior to commencing remi.. been on remi 1.5 years every 8 weeks.. I want to go off it because im scared of my future . I don't wanna be crippled because of remicade. ..so you think 3 months to get it all out of your system .... the joint pain is very very excruciating. . Just unbearable

I had this very same issue! It took about 6 months and getting checked out by a ruematologist before I convinced my doctor that I needed to go without Remi (Note: it is your choice what medications you choose to take--your doctor cannot MAKE you stay on a medication, just to be clear ).

I was having lupus-like symptoms within days of my infusions (intense joint pain, swelling, and inflamation--everything I moved hurt excruciatingy 100% of the time, skin rashes and inflammation). My GI argued that this was probably Crohn's related, but I had never --in all of my worst flares--experiecned symtoms anywhere close to this. My rhuematologist urged me to "take a break" from remi as see if the symptoms went away.

It was 3 months--almost to the day--when my joint pain and skin rashed dropped off the scale. Coincidence? I think not (and my rheme agreed). Anti-body tests were inconclusive, but my rhematologist suspected drug-induced lupus.

During the time I spent off of meds I went on a strict elimination diet (one of the best things I have ever done I think), and in doing so my crohn's symptoms were kept at adequatly tolerable levels. One more month passed before my GI put me on Imuran, and I've been on that ever since.

I still have joint mobility issues that I think stem from the 6 months of inflamation--maybe some scar tissue in there? But it is NOTHING like what I had while on the remicade.


dcsportsfan5,
My advice is (as always) listen to your body. If it's anything like mine, your body is crazy--however--if you pay attention to it, patterns can still give you clues as to what is going on. Sometimes it no more than a gut feeling or craving a particular food (my cravings seem to indicate nutrient deficiencies pretty accuratly).

 

[Bufford]

I had the same problems with remicade. My doctor suggested trying Envyto, but I am terrified of the biologics after the rough ride on Remicade. I would consider trying it only as a last resort, but my symptoms are under control, I am not rocking the boat.

 

[StellaFunk]

Thank you all! It's very helpful.

 

[TammyR]

I've been having similar issues and my GI has taken me off remicade after four doses. I'm waiting to try humira.
I have white flaky itchy skin on my back, hair loss, dry skin on legs and arms. Crohns symptoms going well which is great but the side effects are awful.

 

[TammyR]

When I went for my 5th infusion of remicade the GI stopped it before it began due to the rash. I've now officially rejected this medication too. I basically had flaky, itchy skin combined with severe hair loss when washing/blow drying hair for two months. This stopped about 10 days ago thank goodness. I'm now on Humira.