Your opinions...is it working?

[chattertess]

Hi everyone,

After my first and second dose of Remicade, it only seemed to be making me worse. More stomach pain, SO SO much joint pain, loose stools, extreme exhaustion etc etc. It got the point that last week at my third dose, I pretty much had assumed it wasn't working. My nurse said that from my blood work, she thought I shouldn't have had the third one and just stopped, as my inflammation levels had risen by quite a lot (I think she said it was 24 if that makes sense to anyone??), which was causing my pains.

HOWEVER. Since the third dose, I haven't noticed as much stomach pain, and today for the first time in...well, goodness knows how long, I had a solid bm. For the last 2 weeks I've suffered with bm that were more or less not wanting to happen and were like rabbit droppings if anything did happen...sorry for TMI, but hey, I've gotta explain. Joint pain and exhaustion is just as bad.

The nurse has ordered Humira in for me to try instead after xmas, but I'm wondering whether this is a sign that Remicade is starting to work?? Or just me searching for it. So confused.

Thanks in advance for any responses

 

[chattertess]

Anyone?

 

[rygon]

Remicade takes around 4-6 doses to work properly, I felt a bit better after the 1st (although I started on mezavant at the same time) but nothing after the rest until the 6th or so dose. Been on it for just over a year and its been great for me.

Personally I'd give it a few more goes until you can decide yourself, if by the 6th theres no change then ditch it. Remember you may be coming into a flare now and there isnt enough drug in your body to combat it all.

On a different note I have just started peppermint oil capsules and turmeric which feels like they have helped with the bloating and inflammation (still get it every so often) and boots have a 3 for 2 offer at the moment which is good (cheapest place ive found for them).

Going back to the remicade, i'd definately give it a little bit longer as its been a life saver for me (and after my 4th injection I didnt think it was working either)

 

[DAVID KINGHAM]

3 weeks since my 3rd infusion and my crohn's is back exactly the same as before.Seems to be the way,just a short rest bite but i did get an extra week this time.Got to wait nearly 4 more weeks before the next and it's not helped xmas at all.Can't see me eating my xmas dinner again.Keep thinking it's not worth it but i suppose 3 weeks is better than nothing every 8 and won't be doing as much damage.Just i'm so close to my 3rd op and am really hoping this can postpone it for as long as poss.Hope everyone else is having better luck!

 

[moogie]

yeah remi is a tricky thing right at first. it took me 4 doses before i notice anything and then at the 11th dose i had to double it and take it at 6 weeks.

if you are at 8 weeks and its to long in between ask to get it at 6 weeks. it did wonders for me.

 

[DAVID KINGHAM]

I have just had 3rd dose which lasted a little longer.About 3 weeks of normal toilets and pretty much pain free.For me,it's the best thing that I've had and I've had multiple surgeries and crohn's for 20 years.I saw my gastro yesterday and he had moved my next one forward.There's also an opportunity to have the dose increased as well.I don't know if you have had any benefits from it.I found my second dose didn't seem to do anything for the pain but toilet was normal so was doing something.As my gastro says,if it does feel like it helps,it can be adjusted to last until the next dose.I hope you notice a difference after the 3rd and try and have a merry xmaas

 

[Runner]

For me its the best thing ever. Have taken it for about a year and probably need to look at increasing the frequency i am taking it with my doctor. Some side effects are appearing as well like abscesses and sore throat. However, my back pain disappeared the day after taking my first injection. Other pain in hip have not reappeared. Stools no problems. More energy as well. Its been so good I am not letting doctors know about the side effects which is probably not a good idea... but i do not want to go back to any of the other medications or life without Infliximab/Remicade.

Did you tell your doctor about any side effects such as abscesses? What was their response?

 

[chattertess]

Thanks everyone for your replies

I've told my consultant about the problems and they want to take me off it and put me into Humira. However, things have very slightly improved...but I'm not sure if its enough of an improvement to justify staying on Remicade. Its very difficult to know what to do

 

[Pirate]

It also took 4-5 treatments for it to really kick in for me. Been on it for 3 yrs and its the best I've felt in the last 26 yrs. I still have twinges and pain once in awhile but it sure beats having flares.
My wife questioned it's benefits for the 1st six months because I was still having 2-3 days of pain, cramps and diarreha. The only thing that effects me negatively is joint pain. Its been getting worse the last few months but not enough to say we need to stop.
Good luck with it and I hope it kicks in and you find complete remission.

 

[my little penguin]

SAme here DS was almost at his 4th treatment before things went really well.
Good luck

 

[jami]

I was on remicade about 3 years ago, worked good had to go off though. Started back on it 4 weeks ago...first loading dose absolutely attacked my joints and ran a fever the whole time, doc thought it was arthritis setting in also, so they said that the second loading dose should help with it. Did the second one, and that night woke up at 1am in the worse pain I have ever felt in my life...took me an hour just to be able to sit up in bed...managed to get to hospital...long story short, that was my last option is surgery this coming week. I am hopeful, yet scared...afraid of what I will wake up too, but I have the best surgeon here...thank God I work on a surgical floor and know them all and got to choose who I wanted!!!

 

[xSophiexx]

Hmm where i live you get 3 doses of it then they do a colonoscopy (at this point now) to see if any mucusol healing .. if theres healing they carry on if not they ditch it! so if it takes 4-6 doses to kick in why do they do this! personally i havent seen any effects yet but presumed it was because my area of inflammation is too far gone to be fixed as i was undiagnosed severe crohns for over a year due to nhs being rubbish but perhaps not given it enough time yet hmmm. does anyone know if even if there is some mucosal healing you could still feel rotten? dont know if this is same everyehere in UK or just me lol. sorry dont have any advice other than to communicate with your gi. feel better! x

 

[araceli]

Thanks everyone for your replies

I've told my consultant about the problems and they want to take me off it and put me into Humira. However, things have very slightly improved...but I'm not sure if its enough of an improvement to justify staying on Remicade. Its very difficult to know what to do

My daugther was on her third dose yesterday. SED rate is going up, wish is not good. I know Remicade takes sometime to kick off, but Sedation Rate is not suppose to go up. wish means is not working good. Doctor also thinking about stopping treatment. Is your SED still going up?

 

[Rustlergirl]

Have had CD for 40 years. Three resections. Have fistulas. Gone thru most of the drug offerings. Have been in remission on and off over the years. But in the last 2 years or so, have been having frequent partial bowel obstructions, that have turned themselves around or responded to medical treatment in hospital. It is awful worrying if the obstruction will become complete and require another resection. I am lucky in that I have not had any ostomies. Last year, my GI doc started me on Remicade. It was a big and scary decision for me, but after talking to my doc and family and friends, the consensus was to go for it. I am soooo happy that I did. No partial obstructions or hospital visits since I have been on it. I am still concerned about decreased immune function and have had two unusual infections (for me) - responded well to treatment. But remicade is my friend. Good luck to all of you who are trying it. PS I am on medicare and have a supplemental insurance. If you get the treatment in an out-patient facility, medicare will pay. But not if you have it at home. There are some alternatives to remicade that involve giving yourself shots at home (like with insulin) but then medicare will not pay for it. I don't know if other insurances are the same...but I almost couldn't take the treatment, but my GI docs office helped me out with the insurance. Something to keep in mind. Especially for us seniors.