Should Remicade be stopped?

[deb123]

Hi,

I have been on Remicade infusions since last September for a perianal fistula - which has partially healed.

I had a reaction at my last infusion - rash and hives - very itchy. The infusion was stopped and Dr said to take Piriton - which was put in my IV. The remicade was started up again immediately. Instantly I felt unwell, and sick, and couldn't catch my breath.

Have I become allergic or was the Remicade started up too soon after IV piriton. I don't really want to start a new drug as I am going away soon, and would hate to have problems.

The nurses were whispering that procedure wasn't followed correctly, but Dr has said no more remicade, what to I do?

Any advice welcome x

 

[nogutsnoglory]

It's critical to follow your doctors advice on this. Unfortunately you can develop antibodies and allergic reaction to Remicade after its worked for a while and the last thing you want is the danger of going into anaphylactic shock.

 

[deb123]

I'm starting Humira tomorrow, and they are going to add azathioprine to the mix when I return from holiday.

Very nervous about it all, I'm paranoid about the side effects.

I have perianal fistula which was working its way to my bum cheek, but after my last MRI they said it had partially healed.

I get a constant pressure pain in my bum cheek, almost like I have sat down with a stone in my back pocket. Does anyone know if this could be the fistula?

My groin and thigh also ache like mad at times. A hot bath usually helps, not sure if its muscle pain or a result of the fistula.

 

[PsychoJane]

Well, I assume the groin pain could possibly attributed to the fact that if there is a fistula and/or abscess in the area, it is likely that the immune system is reacting (this is still inflammation and likely a combination of infection too) so the lymph nodes could be painful. If you feel like there is a stone, is there something hard when you touch? I believe this sensation could be related to fistula/abscess but I have not experience that myself, I'm just making comparison to the one I had (mine were enterocutaneous).

For what it is of Humira, it is nothing guaranteed but it should not bring you more side effects than Remicade. It is a possibility that you will build antibodies over time as you did with Remicade since patient showing this with one anti-TNF are likely to see it happen with other anti-tnf. I like to think that at the least, Humira is every two weeks so maybe the adverse effect due to antibodies are controlled quicker and also, manage in a better way than it can be with a treatment you get every two months (this is my belief). Also, the azathioprine should slow the antibodies building process by keeping your immune system lower. So, most important out of all this will be to take precautions regarding infection just as you were supposed with remicade.

 

[lgpcarter]

Not sure about the groin pain, but the butt cheek pain sounds a lot like what I experience with a fistula that has worked it's way out to draining externally. Remicade kept it closed for me, but like you, I had an infusion reaction that meant no more Remicade. I am on Humira now, but it is not doing anything for the fistula. I just started Cipro and Flagyl to help with the fistula and it is helping while I wait for a surgical consult.

Good luck with the Humira!

 

[deb123]

I am praying that the Humira will close the fistula, but was told at the first consultation after they found the fistula that in his opinion Remicade is more effective.

I don't notice any drainage, is that odd? Every post talks about drainage, I never leak or ooze anything.

 

[my little penguin]

DS had an allergic reaction to remicade as well
Hope the humira works for you .

 

[deb123]

Well I've just had the 4 shots of Humira. Totally paranoid about getting a reaction, and feel really tired.
I was a bit of a baby doing them, the ones in my thigh hurt, but the tummy ones were ok.
I suppose it will get easier, just feeling sorry for myself.

 

[TheyCallMeRC]

I am praying that the Humira will close the fistula, but was told at the first consultation after they found the fistula that in his opinion Remicade is more effective.

I don't notice any drainage, is that odd? Every post talks about drainage, I never leak or ooze anything.

If your fistuala has partially healed then you probably wont see any drainage/leakage unless the fistual abscesses. I wish mine would even partially heal. Have had two, one on each buttock since 2006. I have constant drainage and have to wear protective pads and change frequently and clean well to avoid infection. Its a pain in the ass (Ba Da Dum :|) but kinda used to it after 6+ years.

Remicade gave me tightness in chest at second infusion so never got to really try it. Good luck with it all

 

[deb123]

This is the part I don't understand. I have never noticed any discharge ever. I was really ill last year and I really didn't know what was wrong. Had no appetite, groin pain, bum cheek pain, painful joints, pain under ribs etc. the list goes on.

Ended up in ER and they diagnosed Lymes disease, and gave me antiobiotics, which made me feel well in a matter of days!
When they MRI scanned me they found the fistula, then started me on Remicade.
I still am confused, I thought I could always recognise a flare, but my Crohns is really making me feel that I am really not in tune with my own body anymore.

What medication are you on TheycallmeRC? Did you have any pre meds before your Remicade infusion?

 

[TheyCallMeRC]

Well, from what I understand, just as no two crohnies are alike neither are fistulas. mine are right near the anus and they go from outside on the buttocks to inside to the anal canal. So sorry for being graphic but my drainage is everything to fecal matter from diareeah, sometimes blood and sometime discharge from infected abscesses. I keep it as clean as possible to minimize infections but it is hard to keep totally clean 24/7. I wear womens maxipads and on average change 6-8 per day. Expensive as hell but has to do until they heal. I am fixing to start a new clinical trial medicine (post under medicines forum about it) and I hope it works and puts my crohns in remission and closes these damn things up.