Just Recieved My First Treatment of Remicade

[Shelley327]

So yesterday I received my first treatment of remicade after being diagnosed with a severe case of crohns this July. Everything went well...besides all the trouble with the IV and my tiny veins. But I haven’t had any sort of allergic reaction or anything so that’s a relief! I was just wondering how long it might take to see any sort of results? I’ve been sick so long and I’m just so ready to get out of bed and get back to life again. I’m so terrified this treatment won’t work.

 

[nogutsnoglory]

Biologics can take up to 3 months to see the full effect but you should start feeling better in increments after the induction phase.

As for trouble with the iv, you may find hydrating a lot beforehand will help with getting better veins for the needle.

 

[Shelley327]

I go back for another infusion in two weeks so I will definitely be drinking a lot more water before.....3 months seems so long but I suppose it gives me hope if I don't see results right away

 

[nogutsnoglory]

Yeah most likely you will feel better sooner but most docs will wait 3 months before giving up on it. Everyone is so different, from feeling better after the first infusion to needing months before it works.

 

[Alibea]

I never blogged here; I had browsed and got much info and comfort from the info I found; even helped me make the decision to join the Remicade ranks. So time to return the favor.

I was never a fan of biologics, and for 5 years ignored my GI's recommendation of Remicade. I finally tried it this June, tiered of marginal relieve at best with other drugs and by the second treatment I saw relieve I hadn't had in years. So hang in there, I hope you feel better soon. Best wishes....

 

[Shelley327]

thank you, it's nice to hear all the positive feedback about remicade. I haven't tried any other drugs...well except prednisone which I'm really looking forward to getting off of.

 

[Alibea]

A trick I learned to help get nice plump veins before an infusion; I eat plenty of potato chips and drink plenty of water 48 hours before a treatment (any excuse to snack guilt free, I knew there had to be a perk to this nasty disease). The nurses love it when your veins are nice and fluffy.

 

[Shelley327]

hmm potato chips...that I can do! interesting...I have blood tests scheduled in a couple of days I'll try it out and see how it works

 

[ThePear]

Ugh...what a day that was for me, the day I had my first infusion. 3 weeks ago. I almost talked myself out of it, but it kept coming into my head "well you can't keep going on like this either, so you don't have much choice." Why do these drugs have to be so #*%& scary??? I hear non-crohn's people complain about drugs they have to take for various ailments and they say things like "oh it just gives me such a headache and I never get headaches, blah blah blah" I feel like saying yah boohoo! WANNA TRADE?!

 

[LodgeLady]

Had my first set of Humira shots yesterday. Like you I kept thinking of reasons not to take it. I kept reminding myself how I got to this point. All the pain the vomiting , etc. so what are our choices? We want to go back to normal. What risks we are willing to take for that.

 

[ThePear]

Had my first set of Humira shots yesterday. Like you I kept thinking of reasons not to take it. I kept reminding myself how I got to this point. All the pain the vomiting , etc. so what are our choices? We want to go back to normal. What risks we are willing to take for that.

It's true. And then I think "yes, a few people had bad reactions, but we never hear about the MILLIONS who are doing great on these drugs because they're too busy out enjoying life!"

It was really hard to psyche myself up into letting them give me Imuran, and then Remicade. I had probably, oh, 46 trillion conversations with myself trying to work up the nerve. I think it's human nature to fear the unknown and especially in modern humans to fear doing anything that doesn't come with a guarantee that nothing bad will ever ever happen. We totally, completely forget that something FANTASTIC could very well happen and instead only focus on the scary stuff that happened to a few. I wonder what the psychology is behind that.

 

[LodgeLady]

It doesn't help either that on the Humira support thread there is a poster who posts nothing but hazards, law suit info, etc. on Humira. Not really what you want to read on a support thread .

There are plenty of people getting relief from biologics. We just are not hearing about it. They are doing great so they don't need to post on these types of forums, right

 

[ThePear]

It doesn't help either that on the Humira support thread there is a poster who posts nothing but hazards, law suit info, etc. on Humira. Not really what you want to read on a support thread .

There are plenty of people getting relief from biologics. We just are not hearing about it. They are doing great so they don't need to post on these types of forums, right

I can't stand that. I wish there was a way to just block all the negative nellies. I know there are some people who just have bad reactions to all drugs, but man oh man they sure like going around telling everyone how it destroyed their lives. My question for those people is this though: How bad could it have been? You're still here, with enough vigour to complain as loudly and frequently as ever!:emot-nyd:

 

[Shelley327]

so I just had my second round and I'm starting to feel much better! The incredible pains that plagued me whenever I would use the restroom cease to exist and there's no more signs of blood! My appetite is CRAZY and I'm gaining weight. I haven't really noticed any negative side effects of remicade (other than the baseball sized bruise where my IV was...holy cow) and I'm so glad I chose this drug. Even if I never reach remission it's still good to have some relief. Also I'm getting to taper my steroids..yayy!:dance:

 

[ThePear]

:wine::dusty::mario2::headbang::luigi::applause::allright:ika:

 

[Shelley327]

hahaha :emot-dance:

also I would like to point out that my nurse at the infusion center says they rarely see anyone have any kind of serious reaction to remicade..they said the most common reaction was being itchy for a few days...

for me there hasn't been anything scary about treatment...except the needles...can't get over that:yfaint: haha

 

[Mehita]

It's true. And then I think "yes, a few people had bad reactions, but we never hear about the MILLIONS who are doing great on these drugs because they're too busy out enjoying life!"

We just made the decision to switch our 13 year old son to Remicade today. His first infusion is Friday. Reading this thread... makes the decision seem more right. So glad to hear you all are doing well. Thank you!

 

[Shelley327]

When I had my treatment I was surprised at how many elementary age kids there were getting remicade as well! My mom was nervous about me starting this medication too...but so far, so good. I wish your son the best of luck on his first infusion and I'm sure you will be more than happy with the decision you've made

 

[Alibea]

Shelly,

I'm very happy to hear you are doing good, If you are feeling better already this IS going to work for you :dance::dance:

I saw significant relief a week after my 2nd treatment. You know when we all finally say yes too Remicade we are all pretty miserable, like Pear said, these biologics are scary as hell; but I'm glad I did it. Any side effect so far is worth it, so you hang in there; sorry about your baseball size bruise.

I've had a few minor issues but nothing to make me give up on it yet. Bleeding gut, dehydration, killer headaches, needing a restroom in every corner; no thank you.

So I'm on my 6th treatment now and my gut is better than its been in years, and only on 10mg of Pred. So when you get to your 6th you should be doing great. I hope it all continues well for you too. :ghug:

 

[Shelley327]

oh wow, that's so good to hear!!! I just had my 4th and I mean I'm not near remission but I mean no pain, no nausea, no cramping! Although I did have a few incidents with blood (nothing like before) but it was a few days right before my last infusion (I think it was waring off). I'm on to 5mg of pred....still awful, but it feels much better than the 40mg I was on for so long!
....the bleeding still concerned me though because my doctor said you shouldn't see any blood after the infusions....however everyone I've talked to with crohns says they see blood from time to time so..

I also just started going to a new GI doctor, closer to home. He wants to put me on some other meds as well and is possibly going to play with my dosage or frequency of my remicade treatments.

I'm so happy to hear that you're doing so great!! oh wow, now I can't wait to get to my 6th!! thanks so much for the update!

 

[Alibea]

I don't think any of us really goes on "remission" but the symptoms do get more manageable and life is good when you are not in agony. The bleeding will get better in time as it all heals. I had a spell after my 4th, but not since, so I'm crossing my fingers for you :dusty: ; it takes time. We all respond different, but for what you tell, its sounding promising.

The treatment leaves me wiped out (at 50+ that happens), but I'm looking at the bright side; I work a good 45 to 50 hour week, so on my "Remi weekend" I leave early Friday get the infusion and go home to rest and take Monday and Tuesday off to recover, by Wednesday life is good, so do get your rest, R&R has a new meaning for us "chronies on Remicade" (Remi and Rest) it does the body good.

I work in the medical field and what's really scary is how many young people are getting this disease. My hart goes out to all you young ones suffering with this chronic crap. Lots of support going your way.