Anyone on Infliximab every 4-6 weeks??

[Grant]

Basically I had my 3 loading doses in the space 6 weeks, my 4th infusion is due next week & boy do I need it. The Crohns has come back with diarrohea, weight loss & generally feeling unwell. My question being is anyone getting it anything other that 8 weekly because I'm worried that the 8 weekly gap is going to prove too much for me.
Rgds
Grant

 

[JaimeM]

I know some people go to 7 weeks but I've never heard less than that.. Which dose are you on? Some people start on 5mg/kg then if they don't have high enough levels of remicade they will up the dose to 10mg/kg. They can also add on something like imuran.

 

[Maya142]

My older daughter had infusions every 6 weeks and my younger one had them every 4-5 weeks.

I don't know about the UK, but in the US it is definitely possible to have infusions more frequently if necessary.

Many of the parents on the parents' forum have kids who need infusions every 4-7 weeks.

 

[Clash]

My son was on a 5 week schedule at one point then high dose remicade as well.

He was quickly moved to a shorter schedule after starting remicade. 8 weeks was just too long.

There were several kids at the infusion center (primary school age to college age) that were on shorter schedules that 6 weeks.

 

[my little penguin]

Ds never went to 8 weeks
He moved to every 6 weeks and 7.5 mg/kg right after loading doses
Most kids don't go to 8 weeks
They burn through the remicade too quickly

 

[Grant]

I have to admit, I'm not 100% sure what my dose. I'll be finding out next wednesday & will report back.
Grant

 

[ChicagoMom]

We did a regular loading schedule, and then for about a year we did the standard dose, 5mg/kg every 8 weeks. DD started having symptoms again so we did a 4 week dose of 7.5mg/kg, and now we are back to every 8 weeks, 10mg/kg.

 

[FrozenGirl]

I'm on 10mg/kg every 4 weeks. However sometimes it takes longer than the loading doses to see an effect so your GI may want to wait another dose or he may trying moving you to every 6 weeks or so.

 

[Grant]

Just back from my Infusion. My dose is 5mg per kilo. I'm going to see how it goes & if I hit snags then I'll be hot footing over to the hospital to see if I can get the dose upped.
Rgds
Grant

 

[FrozenGirl]

That seems reasonable. Good luck!

 

[ronroush7]

I am off it now but I used to be every eight weeks.

 

[tots]

My next infusion will be the second time I am at a 6 week interval. Hoping for the best.

Lauren

 

[Charlotte.]

I was on Remicade every four weeks, a friend of mine was on every 6, catched a cold too often, is now on 8 weeks, is still effective for him currently.

 

[jasont1]

I'm currently at every 6 weeks. can feel myself sliding back a bit a day or 2 before i get in.

But before my GI & I decided on 6 weeks we went back and forth with different doses at the 6 week mark & the 8 week mark as well.

They just took my word that i felt a lot better every 6 than 8

 

[m86]

Hello Jason. I started Remsima (new brand name for remicade) about two months ago. Dose one, another two weeks later and my third will be 4 weeks from then. Then I (hopefully) will only need it every 8 weeks. Before that I tried methotrexate injections (made me miserable, nauseous, depressed, tired), azathioprine (much the same), and some other pill, can't remember the name. It's been a long road but I'm really hopeful about remicade, it's transformed my quality of life. Now I'm able to be active, concentrate, sleep, and get away with eating most things (BUT fats, acidic food, red meat, sugar, alcohol, refined things in moderation). I drink about 2 litres of water every day. I prob shouldn't self medicate but, I stopped taking budesonide steroids because I didn't feel I needed them. If I feel a flare coming on I'll pop one to ease the pain / symptoms. But I basically have only flared twice in total since starting this treatment. Which is a brilliant result. I really hope my bloods come back confirming its effectiveness so I can stay on this. I haven't been feeling symptomatic so this must be what normal feels like. Now I'm looking forward to my wedding in August when, only a few weeks ago, I could barely function. Hope your treatment goes well. To get back to your initial post, I do feel a twinge / a little more Crohn's-Y when I'm due an infusion. 3,4 days prior. Take care M[emoji106][emoji119][emoji1325]

 

[Grant]

Well 5 weeks on from my last infusion & the crohns is back again, I've contacted the specialist nurse & she's getting hold of my consultant with the idea of bringing my dose forward. I simply cannot stretch to 8 weeks as things stand.
Rgds
Grant

 

[Grant]

Just been speaking to my Specialist Nurse, she's going to speak to my Consultant tomorrow. But I feel rough, its like when you don't taper off steroids properly. Its come back very strongly & I'm not in a good place atm. Just cannot see an end to all this.
Grant

 

[Tuff]

I was on 8 weeks, then started having symptoms a week before, so he put me on a six week cycle. I've had five colds this year, two rounds of antibiotics, strep throat, and now oral thrush. Waiting to see my doctor so that maybe I can go to 7 or 8 weeks again. I never had this kind of problems with the longer cycle.

 

[Grant]

They brought my infusion forward by a week so I had it on the 27th May. Well things settled down quickly thankfully & I'm going to be having it 6 weekly. Also waiting for the results of a special blood test that was sent to London. (checking for anti bodies iirc)
I'm having an MRI on Monday. I do worry about the crohns coming & going on such a regular basis & the scar tissue build up. What I need is to be able to have it often enough without getting those dreaded feelings of "here we go again". That obviously increases the infection risk which is another worry.
Rgds
Grant