Is Remicade the only INFUSION option?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Nov 12, 2010
Messages
115
My TB tests keep coming up inconclusive so I will probably not be able to use Remiade :( especially because my grandma and uncle both had latent TB. Does annyone know of another medicine that worked for you that is infusion? I REEEAAALLLY am against the idea of injections!!! And that's looking like the only option, so I need HELP!
 
Sorry I don't know of any other infusions best to ask your doctor of all your options available. Just wondering why you are against the idea of injections?

Hope you find something x
 
The injections aren't in the veins or deep muscle. You just pinch your stomach a bit and inject it into the fat. I'm not sure how the pens work.
 
I think you can take Immuran, but it too is IV therapy....I believe its the same type of medication as Remicade-TNF blocker. I know with Immuran you have to have more injections but people report remission after use. Im not sure if you have to be TB neg. Ive had one dose of Remicade and looking forward to my next....I sure do feel much better since having had it. Best wishes to ya!
 
Because injections hurt, IV's don't hurt at all. At least for me they don't. Don't the injections hurt like a shot?
And the video I watched of the Humira the girl was crying and I heard the injection site can get all irritated red and itchy.
 
Kate if your TB pos I don't think you can use any of injectibles like Humira or Cimzia,just for the record the Humira pen is just to easy to use don't worry about that.

Surgery July 2010
Maintenance drug 6mp
 
I guess I don't understand tuberculosis. If you test positive for TB, is that curable or do you always have it? Could you go on TB treatment and try the test again?
The Humira and Cimzia websites also says that you need a TB test pre-injections, so if Remicade is out then Humira and Cimzia is out as well.

Honestly though, the sting from the Humira pen is only a few seconds, and when it's done, it's done. My remission on Humira was so awesome I told my husband I would do the shots every single day if I had to. A teeny bit of pain FAR outweighed crapping my pants in public and I was able to sleep through the night without getting up to poop.
I never cried or even came close to crying from my shots, I always looked forward to them because I knew that was 2 more weeks that I might feel better.

I hope something works out for you.
MBH

BLM said:
I think you can take Immuran, but it too is IV therapy....I believe its the same type of medication as Remicade-TNF blocker. I know with Immuran you have to have more injections but people report remission after use. Im not sure if you have to be TB neg.
I may be mistaken, but I've never heard of an Immuran IV. Are you thinking Imuran? That's only in pill form as far as I know. Maybe you were thinking of Humira?
 
I've not had any treatments with an injection but if you find it better with infusion see if you can change it with your doctor. Starting any new medication is stressful especially if you don't want to start it. x
 
Don't know what video you watched, but I never saw anyone cry...think the marketing on that one needs to be worked on.

I have done both Humira and Remicade. Personally, I think the IV hurts worse especially if you get a nurse that just can't find your vein! I give them two tries and then ask for another nurse....

Humira does not hurt. I used the pen and could have not been happier. Used the cold pack first for about 15 minutes then just did the shot. Never felt a thing. Sometimes there was a slight sting if I didn't take the Humira out of the fridge early enough but that was because it was cold and not room temperature. The needle in it is like the little tiny hair like needles that are used with diabetes shots. Not a big deal at all. The only reaction I ever had was slight bruising at the injection sight if I happened to hit a vessle....again, no big deal. The whole shot process takes about 10 seconds. Doctor should give you a sample Humira kit with a fake pen so you can practice. Just numb with cold pack, pinch about 2 inches of skin on stomach, place pen in the middle and press the plunger. Done!

Only reason I went back to Remi is the Humira just didn't work as well. Otherwise would never have changed.

Remember Humira and Remi are basically the same drug, just that Humira is a human based protien vs the mouse protien in the Remi. So if you are told you cannot take the Remi due to the TB, chances are you cannot do the Humira either. So this decision may be taken out of your hands anyway. Don't know about Cimzia and the others. Haven't had to research them yet....and with any luck will not have to. Remi is working just fine for me.
 
Imuran is a pill, not an IV. Also it's a immune suppressant not anti-TNF. I am taking Imuran at the moment because I went to a different pharmacy and they didn't have the generic azathioprine that I normally take. I think BLM must be confusing Imuran with something else.
 
I've not had Humira, but I have done daily injections. It took a week or so to get used to it, I found that it rarely hurt. I found that when I was in the hospital I ended up asking the nurses if I could do the shot on myself. It tended to hurt more when they did it as opposed to doing it on myself.
 
Cimzia doesn't hurt at all and it's only once a month. But you can't take it and be TB pos. You have to be treated for the TB first.
 
Since your doctors are unwilling to put you on Remicade, it is unlikely that they can put you on any of the other infusable or injectable anti-TNF drugs (Humira, Cimzia) because they all work in the exact same way - by toning down your immune system.

It's tricky to put someone with TB on an immunosuppressant at any time after they test positive since TB is a tricky bug to get rid of. Treatment for TB usally involves months to years of antibiotics.

Most people with TB are asymptomatic because their TB is latent (literally, the TB is walled off by immune cells from the rest of the body in a type of 'cage') but if they are put on immunosuppressants, the immune cells stop forming the cage and TB can reactivate, potentially causing fatal disease.
 
If you test positive for TB, it means you have been exposed to the germ at some point in your life. You can be a carrier of it and have no symptoms. When these people are given immunosuppressant therapy, it can activate a TB infection. This goes for all biologics, Remicade, humira, cimzia, etc. They all carry the TB warning.

Immuran is not a biologic, but it is an immunosupporesant and it can be taken in pill form. I didnt even know you could get it in injection form.

Cant they do a more specialized test to see if you are actually carrying TB, and not just the quick one that detects exposure? I think there is a swab they can do.
 
The definitive TB test is a chest x-ray and your doctor should have performed one as soon as the PPD (skin test) came up positive anyway to confirm if you do or do not have TB. In general they will give you a course of antibiotics to try and clear it up if they think you are positive. If your lungs look clear of nodules then I think you are ok to start remicade or any of the TNF drugs. However, as said here, any immunosuppressant that is a biologic (remicade, humira, cimzia, tysabri <-the only other infusion, but has other issues and also the TB issue) will be bad options if you have a latent TB infection.

Ask your doctor for the chest x-ray and if they don't know about it (my doctors required a chest x-ray and ppd, even with a negative ppd) then get a new doctor, they are playing with fire and not taking the proper precautions for you.
 
Just wanted to chime in about the alleged "pain" of injections. I have a very low pain tolerance. Like, ZERO pain tolerance. I have been taking weekly Huimira pen injections and they are not bad at all IMO. Stings for like half a second. And I have never had a site reaction. I started doing weekly subcutaneous methotrexate shots about two months ago and those have zero pain, nada, nothing. The worst part to me is watching me give myself a shot - it's weird.

Good luck - I hope they find something that you can take with your positive TB status.

-Amy
 
Back
Top