10mg dose of remicade-anyone on it? Little nervous!

[Lani5]

Hello all I've been on remicade for about a year and it saved my life! Unfortenately I wasn't always lasting to the 6 wk mark and these past 10 days I have been in a very bad flare so I've been admitted to the hospital by my go on fluids and he wants to up my dosage of remicade to 10mg I'm scared! Uu heard the max dose is hard to handle any info would be great! I'm getting it tonight!

 

[Lani5]

My gi*

 

[Hope345]

Lani,

My daughter, 14, was told she would be put on the 10mg's next time if she continues to have symptoms 1-2 weeks prior to dose. I wouldnt let them last treatment, but I know the disease needs to be put under control.

We are going to proceed with caution too.
so far, it appears Bs symptoms are gone, but the lab tests will show more.
wishing you the very best.
Julie

 

[katiesue1506]

I was doing double doses every 5 weeks until it stopped working completely for me. I didn't notice anymore side effects with the higher dose.

Good luck!

 

[Lani5]

Im Sorry It stopped working for you I did have no choice but to get it so far it is working towards gettig me back to be better so crossing fingers :/! Hope all goes well with your daughter

 

[jlm]

I honestly don't now how much I was getting but I was getting a double dose consisting of 6 viles. The airmiles I racked up from these visits were great lol. Didn't notice any new side effects or anything.

 

[kiny]

I don't know how useful a high dose is in people who use inflximab, because the reason they actually give 5 mg / kg in most people is because in early trials 10 mg / kg didn't work very well, they lowered it because it actually worked better on a lower dose.

 

[Taytan]

Don't worry I'm on 10mg every 6 weeks. Was on 5mg for 6 yrs. the change was smooth and Remicade has helped me tremendously. Hope you do well!

 

[Hope345]

Ltani,

We chose not to put our daughter on a higher dose at this time, but we added the Cortifoam and it stopped the remaining symptoms. Our doctor assured us, if in the future, we did need to raise the dose, the side effects would not increase.

My feeling is you do what you have to do to get rid of the inflammation. If you would like to try something else you can. However, it may work for you.

How are you doing and where is your Crohns located?

 

[Lani5]

Thank you everyone I greatly appreciate your comments!

I am doing better than in hospital but still not feeling great, hoping that as time goes on it'll get better my nurse said it may even take until the next infusion! But I hope to eat more by then my Crohn's is in my stomach Julie, all over it. What about your daughter?

 

[Hope345]

I hope you get feeling better soon too. Are you able to eat?

Our daughters Crohns is in her colon. she is doing really well right now.
With all of her bleeding, it was hard to tell when or if the REmicade was working.. possibly more effective and quicker for you

I hope you have lots of support around you.

 

[AK47]

I wish I had the support that I needed to get thru this disease, but most people around me don't realise what I have to go thru everyday and just tell me that I should be strong..there's only so much I can take.

 

[Dukeis]

I was on 10mg/kg. every 6 weeks the last 3 years I was on Remicade. I took it for 7 years. The double dose never seemed any different except it helped my Crohn's better then the 5mg/kg every 8 weeks did. It never stopped working for me. I had to stop it because of a fungal infection.

 

[JudithC]

My Remicade is coming every 5 weeks now instead of 6, but my symptoms are still getting worse within two weeks of the infusion. Worse, now I have Crohn's arthritis which seems to have settled in my knees feet and hands and gives me an achy feeling in my legs almost constantly. Add to that the usual tummy ache. Does anyone have Crohn's arthritis? Are you doing something extra for it?

 

[Lani5]

Just read this and I gotta tell you my knees have been bad especially my right one! I started taking calcium . Wat did ur doc suggest?

 

[JudithC]

Hi Lani5, My doctor only brought my Remi dose from 6 to 5 weeks. It is NOT working. I need to do some research so I can discuss this logically with him at my next appointment. I'm hoping I can get suggestions from the Crohnies here.

 

[chrisnsteph1022]

I'm on 10mg/kg every 6 weeks, as well as 25mg/ml methotrexate weekly. I haven't had any infections or illnesses.

 

[Hope345]

Lani,
We did raise our daughters remicade to 10 because all her symptoms came back 4-5 days before her treatment. She is not doing great yet. Did the calcium help your knees?
Hope you start doing better too...

 

[Lani5]

Judith the remicade sometimes works overtime and takes a while but everyday should feel a little better! If it doesn't feel that way soon try switching to humira or anther drug because it may not be working ! Julie I hope ur daughters doing well, just started eating rly and the calcium so hope it helps soon! I also use max freeze on my joints which helps!

 

[JudithC]

So good to learn that doubling the Remi dose seems ok with most of you. Will have my first double dose on Friday, only 3 weeks after my last dose. The last dose did not work AT ALL. I was worried about side effects.

 

[Manzyb]

Judith. I did 10mg every 4 weeks for about and I didn't have any side effects from the doubled dose at all. I hope it works for you!

 

[AmyCstar]

Hello, I'm new to the forum (been a leerker for awhile now) and have been on Remicade since 2001 with overall great results. But over the past 6mo I've been having lots of complications from my crohns again. I'm going in tomorrow for my first double dose and I'm a little worried because I have started having a mild fever and pain after infusions for the past two years and I'm hoping the double dose doesn't cause a bad reaction. Does anyone have any experience with this or any reassurance? Also how long after infusion with a double dose did people start to see a difference in their health?

 

[Starlight]

They put me on the double dose at I think my 4th or 5th treatment since the regular dose wasn't helping enough. I've been on the double dose since and I've been on remicade almost 7 years. I didn't notice in more side effects with the double dose than with the regular dose.

 

[AmyCstar]

Thanks , how long after the double dose did you start to experience an improvement?

 

[Starlight]

I started improving even on the regular dose after just a few days. They doubled the dose because I was still getting a good bit of mouth ulcers and the double dose helped stop them. The past year or so though I'll get a bout of them every once in while between treatments, but I've also been on remicade a long time, so it may not be working AS well as it did in beginning, but it still works good enough to keep with it. Before remicade I lived with 20+ ulcers in my mouth a one time, 10 or less was considered relief, and I was basically bleeding out from my colon. Started the remicade and within a couple of days, my bleeding stopped and the ulcers started to go away, and stayed away for the most part! Remicade gave me my life back!

 

[2thFairy]

I did the double dose of 10 mg/kg at 4-week intervals and didn't have any side effects at all other than being sleepy the day of the infusion, same as I did on 5 mg/kg.