Decision time - Remicade of Humira?

[deb123]

:sign0085:


Hi,

Had an appointment with Gastro team, and been told the next step is to start with Remicade or Humira.
I have one perianal fistula which is on my left side and goes towards pelvis - wierd because my pain is in right bum cheek, and in that leg??
Also there is inflamation in the perianal area. My small bowel is fine along with the resection i had done to remove terminal ileum. I have been in remission for 7 years, and am only on Questran.

Ive had bloods, and chest xray done today, and i have to make decision soon - what the hell do i do? On paper both sound the same, but what is the reality?

I noticed that both can cause Psoriasis, which i can get quite bad.

The surgeons dont think putting a seton in will be benificial, as from my MRI there is no sign of collection of fluid.

Im showing symptoms of infection ie sweats, feeling tired, and pressure and aches in bum cheek and leg, but they dont think i need antibiotics.

Which road do i take? I want to take the fastest route out of this episode, and back to that lovely lovely place called remission

 

[chrisnsteph1022]

I think they're pretty much the same. The big difference is the delivery method. Would you rather do your own shots at home every couple weeks, or go in for an infusion every couple months? I've done both (but Cimzia instead of Humira) and I kinda prefer the infusions. It's my relaxation day. LOL

 

[deb123]

Are you not worried about what these kind of drugs can do to your body?

I am seriously worried about the side effects.

I have asked if i can just go on antibiotics, but they say that they will not heal the fistula alone, and i will set my self up for future problems if i dont sort it now.

I just get the impression they are dealing these biologics out like sweeties - or am i being silly??

And i appreciate straight answers - if i should just get on with the biologics and not be so silly then please give me your views.

 

[chrisnsteph1022]

I'm more worried about what I KNOW the Crohn's will do to my body, rather than the small risks associated with the drugs. I don't think they're dealing them out like candy. I just think the current thinking is it's better to hit it hard from the beginning and get it knocked out quick.

It's a decision you have to make and be comfortable with. I always said I'd never take Tysabri. But now that it's about all that's left, I'm considering it as an option. I don't even have a fistula. But I've heard Remi is very good for fistulae.

 

[ravensfan88]

It was explained to me that if you use Remicade, and fail it - you can try the other medications... however if you try Humira or something else first, you can't do the Remicade if you were to fail Humira.

I'm not sure why, maybe the way it's administered or the type of biologic it is (Remicade contains mouse protein) but ultimately the choice is still yours to make!

Good luck.

 

[crazycanuck]

I'm more worried about what I KNOW the Crohn's will do to my body, rather than the small risks associated with the drugs..

That's a brilliant way of putting it. I just said this in another thread but I rather take the small risks to have the life I have on Remicade.

Why worry about what you cannot control?

The choice was simple for me. Sit at home in my parents basement or give remicade a shot. That was almost 2 years ago and it's worked amazingly well so far. I'd say I'm in remission right now.

 

[deb123]

Hi,

I am aware of what Crohns can do to my body and lifestyle, but please understand that i was in remission for 7 years since surgery. The only medication i took was Questran and B12, then BAM! I started to feel unwell this year with cysts in my breasts, psoriasis out of control and so much pain under my ribs and in my joints.

I thought it must be something else as i was'nt experiencing the same symptoms i used to get when my crohns flared ie diarrhea, mouth ulcers, cramps, tiredness.

I thought it was maybe a build up of scar tissue where i had my resection. I was knocked for six when they said i had a fistula on my left side into my pelvis. The pain i get is in right side - ribs,pelvis,hips,groin,thigh even foot, but the tiredness is the same. I still havent even got diarrhea!
So thats why im scared of taking these drugs - i dont think that my symptoms match up
My bloods are clear, just the MRI scans showed the fistula.
Maybe i will ask if surgery will fix the fistula. If i have to have the drugs i am leaning towards the Remicade now after reading posts on this forum.
Thanks everyone

 

[Thermo]

Aside from the resection you had it sounds like your disease has taken a quiet progression, however it is progressing at all times even without symptoms. If you are worried about biologics get your TPMT enzyme tested for 6MP. These drugs have been studied for longer term use and have been proven safe. I would recommend trusting the doctor if they say its time then you beat the odds and just go with it. Humira is easier however dealing with specialty pharmacies and getting a refrigerated UPS shipment every couple of weeks is a pain. Remicade is kind of nice in that you get a day all to yourself sitting in a transfusion center with chemotherapy patients getting an IV for a couple of hours. If you time your appointments right you can get served a meal since they admit you each time. Please take my advice you cannot hid from a fistula it will show itself one day and you will end up in the hospital in agonizing pain.

 

[ontariomom]

Hi i am just wondring if you have started treatment yet and what you decided? i am in that same boat right now, with those two treatments being offered up to me. And i have to admit i am freakin terrifed and dont know what to do.

I am leaning towards remicade as i absolutely hate needles and know i couldnt give myself shots......

its so hard to know what to do.......i would love to hear what you chose and why.

 

[deb123]

Im going to go with the Remicade, as i have been told that has been around for longer, and hopefully there will be no nasty surprises.

It would be easier for me to do the Humira as i could do that at home eventually. I will have to take time off work and travel quite far for the Remicade, but it will be worth it if it works. The gastro nurse also said that once im established i may be able to get the district nurse to come to my house to do it.

I have also been speaking to a friend who suffers from severe Ankylosing Spondylitus, and he has been on Remicade for 8 years, and took part in the original trials in the UK. He says that if he had been treated with the Remicade when he was younger he would not be in the disabled condition he is in now. Since starting treatment his condition has progressed only slightly. The only side effect he has suffered has been a dry mouth.

He advised me to go for it, and said that you are thoroughly checked bloods/urine/temperature/blood pressure etc - and it is all noted in your book, so if any change before treatment they question why.

I feel more comfortable with it now. I think because of the way they adminstered it, it freaked me out quite alot.

 

[Trysha]

When I was told by the GI to choose between Remicade and Humira I immediately asked him which he would choose.Without a moment's hesitation he immediately answered
Remicade. It can act within the first day of the infusion I have been told.
So I am on the Remicade pathway , takes a month or two for the government rituals of financing etc.
However like others--I still have some reservations about taking it.
Trysha