Remicade Club Support Group

[j.bug]

If you have trouble veins, make sure to let the nurse starting your iv know. Also, if you have one that works better for you, let them know that too. they can 'hot pack' your arms too. the heat helps the veins expand. If you go in there cold, they will be contracted to begin with.

I am one of those that is tired afterwards. The reason you get cold is because the infusion meds are kept at room temp. Our bodies are so much warmer than room temp, so as your blood carries this 'cold' liquid through your body, it becomes cold. Most nurses will try to hep control your temp with warm blankets.

First infusion tomorrow!!!! How you feeling??!!! You will breeze through it. Some people feel a difference after their first infusion!

 

[Lisa]

When I get my infusions, the IV is started where ever the nurse finds a good vein lol....sometimes my hand, or wrist, or crook of the elbow (I have really GOOD veins there, even after years of sticks!).....

I am usually tired after, but that is because of the benadryl....I have gone to work after, but try to time my appointments so I go to work first, then to my appointment then home....I usually don't restrict anything, even drive myself the hour home....but tend to go to bed early - I also am up about 5am the morning of, so I'm tired anyway!

Good luck with the infusions - I have my next one on Dec. 3rd.....

 

[DAVID KINGHAM]

Had my hopes built up but been let down bad.I had my 3rd last week so will be starting maintenance in january. It's every 8 weeks and takes about 2 hours to go in you and an hour checks before you leave.I do feel slightly different as in not needing the toilet as much so can see me possibly increasing my weight.After my first i thought i was cured coz i had a week pain free but that's all i got and the story keeps repeating itself.Seems to only last about a week and at the mo i'm having a little trouble with my throat feeling swollen,not sure if it's linked but feel it is.Kicker is,pain comes back too quick.Not holding out much hope on this one but it's all i got at the moment.

 

[j.bug]

Had my hopes built up but been let down bad.I had my 3rd last week so will be starting maintenance in january. It's every 8 weeks and takes about 2 hours to go in you and an hour checks before you leave.I do feel slightly different as in not needing the toilet as much so can see me possibly increasing my weight.After my first i thought i was cured coz i had a week pain free but that's all i got and the story keeps repeating itself.Seems to only last about a week and at the mo i'm having a little trouble with my throat feeling swollen,not sure if it's linked but feel it is.Kicker is,pain comes back too quick.Not holding out much hope on this one but it's all i got at the moment.

I think they usually say you will know after the 4th if it will work for you. A couple of things that may be helpful to you though:
My drs draw blood at every infusion. They check all of my levels. Ask your GI if your inflammation markers are getting better. I know for me, I still have a TON of pain, and I am just about right where you are with infusions, though my fourth would have been last Tuesday, and I had to postpone due to emergency surgery. I am rescheduling for next week. If you took a long time to get as ill as you are, it would only make sence that it would take a long time for you to heal.
The other thing you can ask your docs about, is a Remicade Trough level. They take this level at i think, week 6 and 7 once your 8 week schedule is in place. This test tells them the level of remi left in your system. Some peoples bodies use the Remi at a faster rate. They may need to increase the dose, and or frequency of infusions.
Hope that this helps some. I would say to red everything that you can. your docs dont neccesarily know everything, and sometimes they need guiding. be your own advocate!!!
I hope that you start to feel WELL very soon!!!

 

[spinnychick]

I love all the support and info I get on this thread, thanks to everyone for all the posts! It's great being able to chat about this with others going through the same crap (literally) haha.

 

[j.bug]

I love all the support and info I get on this thread, thanks to everyone for all the posts! It's great being able to chat about this with others going through the same crap (literally) haha.

poop puns are fun here arent they??!!! lol! This forum has helped me sooooo much. And I have met some of the most amazing people ever too. I am rather sure Ive got some life long friends here.

 

[barrett]

Thanks thisisme.... I too have small veins and they always have a tough time getting the IV in my hand... for my scopes they just put it in the arm which is must easier.

Spinnychick... yes it would be great to be able to compare experiences with... are you going to be on any other meds while taking the remi?

 

[spinnychick]

Barrett - I am not going to be on amything else right yet. I am not a good candidate for Imuran due to my genetics and methotrexate didn't work well with me. Are you going to be on anything else?

 

[barrett]

Hi Spinnychick,

I am still currently on pred, on 25 a day now. Tapering by 5 per week. I am currently taking pentasa and nexium and proctofoam. I had a bad reaction to imuran. The reason I chose remi over humira is because on humira I would have to go on methotrexate and on remi I can opt for the steriod injection on my treatment days. I didn't want to try the methotrexate yet because of all of the side effects and if the remi works as well as I hope, there may be a chance for another child. If on humira on methotrexate that wouldn't be possible.

 

[spinnychick]

I was on the pred for five months and between that and the crohns have suffered bone loss and now diagnosed this week with osteopenia. I hated the pred, lost alot of weight, never hungry, anxiety, dizziness. I chose remi over humira because I didn't want to self inject needles and figured infusions every two months would be better. Do you load up (first dose week zero, dose two at two weeks, then for then eight)?

 

[cmichael]

I was on the pred for five months and between that and the crohns have suffered bone loss and now diagnosed this week with osteopenia. I hated the pred, lost alot of weight, never hungry, anxiety, dizziness. I chose remi over humira because I didn't want to self inject needles and figured infusions every two months would be better. Do you load up (first dose week zero, dose two at two weeks, then for then eight)?

Yes, that's how they did my remi dosage. I was lucky enough for some of my major symptoms to go into remission and get off if it. I had only 3 infusions and consider myself one of the lucky ones. I think my symptoms were more due to raw skin on my buttocks causing moisture and what i thought was anal leakage. Now that this has healed, the itching has subsided and the moisture has dried up.:thumright: Hopefully I won't have to go on it again. Good luck with the treatment and wishing you speedy results!

 

[spinnychick]

Yes, that's how they did my remi dosage. I was lucky enough for some of my major symptoms to go into remission and get off if it. I had only 3 infusions and consider myself one of the lucky ones. I think my symptoms were more due to raw skin on my buttocks causing moisture and what i thought was anal leakage. Now that this has healed, the itching has subsided and the moisture has dried up.:thumright: Hopefully I won't have to go on it again. Good luck with the treatment and wishing you speedy results!

So are you off remi now?

 

[mreyn]

I didn't know they let you get off when you get into remission. Our sons dr said he will have to stay on it from now on.

 

[spinnychick]

I didn't know they let you get off when you get into remission. Our sons dr said he will have to stay on it from now on.

I thought the same. However, I'm totally new to this and haven't yet felt remission. That being said, I don't know what to expect for remission, good days, bad days, etc, etc.

 

[JoFowler]

I have my appointment for my first Remicade treatment on Wed. Fingers crossed!

 

[spinnychick]

I have my appointment for my first Remicade treatment on Wed. Fingers crossed!

There's a few of us starting this week.

 

[JoFowler]

Good luck to everyone!!

 

[Natedawg]

My doctor just increased my dosage from 5 kg/mg to 10. For those of you that made that jump, were there any side affects you felt? Im just wondering if my body is going to act differently doubling the dose. Also, my dr. said the usual time people are on 5 is about 3 to 5 years, and I made it 18 months. Anybody else see that the dosage of 5 didn't last very long?

 

[stevej54]

Just had my first remicade infusion last week. I was more than a little nervous about it but it went fairly well until the IV drip stopped dripping. The nurse spent the last 10-15 minutes moving the needle around to get it to work. It was not pleasant but I have been almost symptom free for 2 weeks. I think its a combination of my prednisone and the remicade. My next infusion is next week and the good news is that my work just got me an Ipad. Can't wait to take it to my next appointment.

 

[spinnychick]

Had my first infusion today. Felt a bit tired, disoriented, just fuzzy, not quite normal, a wee bit of nausea, but now feeling good. My tummy is gurgling like crazy though, so not sure what's going on in there.

 

[spinnychick]

Just had my first remicade infusion last week. I was more than a little nervous about it but it went fairly well until the IV drip stopped dripping. The nurse spent the last 10-15 minutes moving the needle around to get it to work. It was not pleasant but I have been almost symptom free for 2 weeks. I think its a combination of my prednisone and the remicade. My next infusion is next week and the good news is that my work just got me an Ipad. Can't wait to take it to my next appointment.

Symptom free ... that interests me, as I have never been there, was diagnosed this May. What symptoms are you free from?

 

[LonghornGirl]

Had my first infusion today. Felt a bit tired, disoriented, just fuzzy, not quite normal, a wee bit of nausea, but now feeling good. My tummy is gurgling like crazy though, so not sure what's going on in there.

Did you drive yourself home afterwards or have a ride? We're you able to eat a good meal today.... During or after the process? Good luck, I hope it brings you relief!

 

[spinnychick]

I hade a ride home. Nurse said I wasn't allowed to drive due to benadryl. Had a snack during infusion and ate a big dinner too.

 

[LonghornGirl]

Oh boy, I was told I should be okay to drive after, thanks for the heads up. Hope the nausea goes away soon & you rest easy tonight!

 

[Clash]

Spinnychick, I hope you start feeling great real soon. Sorry you had the fuzzy, nauseated feeling Did the IV go well?

 

[jgtalanoa]

I'm getting ready to start Remicade and Azathioprine and very nervous. Can anybody tell me of any side effects and does the good outweigh the bad? I've been told that once you start it you cant stop but I've noticed that some people have said it just stops working? What do you do then? I also started Entocort (steroid) and had an allergic reaction. Not sure what thats about.

 

[Clash]

jgtalanoa, welcome to the Remicade club...the I.V. league LOL!! When were you diagnosed? Where is your CD located and are you having symptoms now? We were faced with the Remicade decision at the time of diagnosis due to the severity(it is my son that has CD, he was dx earlier this year at age 15).

Studies have shown that if you stop Remicade it can become ineffective for you as you will have built up antibodies to the drug(although AZA is px'ed to inhibit your body from building these antibodies), making it less effective or ineffective if you try to utilize it again. There are people who have been on Remicade for years, for others it starts to lose efficacy and they have to move on to other meds, usually other biologics such as Humira or Cimzia.

Hope Remicade works for you and you see results quickly!

 

[jgtalanoa]

Thanks Clash,

I was diagnosed just this past September. The CD is in the terminal ileum and cecum and always having symptoms. I'm getting ready to start the meds as soon as I get all my bloodwork back and get a few immunizations but really nervous. I also have an obstruction so going to get a CT scan this friday to see how bad it is and if I need surgery. Did the meds help your son? So sorry to hear about him being diagnosed at such a young age. This is so miserable, I wouldn't wish it on anybody in this world. Hope he is feeling better and thanks for your help

 

[Clash]

jgtalanoa, my son's CD is active in his TI, he did great through the loading doses bit we've had to tweak hos schedule and add methotrexate in an effort to get him into full remission. He has no side effects from the infusion save being tired for a couple hours afterward.

 

[spinnychick]

Spinnychick, I hope you start feeling great real soon. Sorry you had the fuzzy, nauseated feeling Did the IV go well?

The iv part of things went fine. Feeling kinda gross this morning but I've heard loading doses can do that. Back to bed I go for a bit.

 

[j.bug]

I love all the support and info I get on this thread, thanks to everyone for all the posts! It's great being able to chat about this with others going through the same crap (literally) haha.

It is a nice little community huh??! :hug: Smile Dee!

 

[j.bug]

Oh boy, I was told I should be okay to drive after, thanks for the heads up. Hope the nausea goes away soon & you rest easy tonight!

You can drive home if benadryl doesn't make you woozy. I drive to and from my appointments now. However, I would reccomend bringing someone, atleast your first time, for moral support. It is a bit nerve racking. Anxiety over the infusions is pretty normal. Helps to have someone to lean on! Good luck!

 

[JoFowler]

Sorry you're not feeling the greatest, hope it passes soon.

I expect to work the next day, wonder if I should have a back up plan?

 

[Lisa]

Jo - I have gone to work right after my infusion with no problems...don't really feel any different other than maybe a little tired (from the Benadryl).....and I go to work the day after.....as long as you don't have any problems with the infusion itself you should be good to go!

 

[JoFowler]

Okay good! I am going home after my morning appointment, so I will get lots of rest tomorrow.

Thanks

 

[spinnychick]

Feeling fine and up and about now. A wee bit wonky but so is hubby so may be a wee nug.

 

[tots]

I had those problems the first time

The second time when when they added the 100mg of
hydrocortisone and I took the telenol for a few days after
I felt much better


Hope you feel better soon!

Lauren

 

[spinnychick]

Thanks Lauren. They gave me hydrocortisone pre remi. And tylenol and benadryl. It went better than expected. Still had 7 bm's so far today tho and gut pains on and off. How soon does remi start working?

 

[cmichael]

So are you off remi now?

Yes, I am off the Remi and was also told that I would need to stay on it once the treatment started. There were two factors that I think influenced the Dr's decision, I was originally put on it because I was having some rectal mucas leakage which has since stopped. Also, my butt cheeks were so itchy that since that's stopped the leakage stopped too, so my thought was that they were connected and the Remi had no effect on these. PLUS, a friend of mine who has Crohn's much worse than me, said he contracted colon cancer in the rectum from taking Remi. Naturally my Dr. told me this was unrealted, but it put big fear into me, and since the other symptoms were on the mend he said it was ok to hold off.

 

[thisisme]

hey spinnychick! Glad to hear the first infusion went reasonably well!
I just had my 2nd a week or so ago, and ready for my 3rd loading dose on the 13th of December.
I also have hydrocortisone and benadryl beforehand... i pretty much sleep the rest of the day once I get home! and i do get some nausea afterwards and headaches.
I haven't seen any improvement as of yet, however my doc did tell me that she didn't really expect me to have any improvement until at least the 3rd infusion due to the severity of my inflammation... Apparently some see improvement after the 1st, some the 2nd, some the 3rd... and some even longer! As per usual with this lovely disease, everyone is different and everyone responds differently!! So nice

Im currently experiencing a lot of symptoms I havent experienced for awhile... pain, more frequent BMs, etc. A lot of joint and muscle pain too... Im pretty sure a lot of it is from weening off prednisone (down to 5mg on Thursday, WOOT)... but who knows, right?!

Good luck! Hope you see some improvement soon!!!

 

[spinnychick]

Yes, I am off the Remi and was also told that I would need to stay on it once the treatment started. There were two factors that I think influenced the Dr's decision, I was originally put on it because I was having some rectal mucas leakage which has since stopped. Also, my butt cheeks were so itchy that since that's stopped the leakage stopped too, so my thought was that they were connected and the Remi had no effect on these. PLUS, a friend of mine who has Crohn's much worse than me, said he contracted colon cancer in the rectum from taking Remi. Naturally my Dr. told me this was unrealted, but it put big fear into me, and since the other symptoms were on the mend he said it was ok to hold off.

I worry about long term affects as well cmichael. Hey, my big bro's name is C. Michael. Small world! Are you on anything now, or just holding off med free in remission?

 

[spinnychick]

hey spinnychick! Glad to hear the first infusion went reasonably well!
I just had my 2nd a week or so ago, and ready for my 3rd loading dose on the 13th of December.
I also have hydrocortisone and benadryl beforehand... i pretty much sleep the rest of the day once I get home! and i do get some nausea afterwards and headaches.
I haven't seen any improvement as of yet, however my doc did tell me that she didn't really expect me to have any improvement until at least the 3rd infusion due to the severity of my inflammation... Apparently some see improvement after the 1st, some the 2nd, some the 3rd... and some even longer! As per usual with this lovely disease, everyone is different and everyone responds differently!! So nice

Im currently experiencing a lot of symptoms I havent experienced for awhile... pain, more frequent BMs, etc. A lot of joint and muscle pain too... Im pretty sure a lot of it is from weening off prednisone (down to 5mg on Thursday, WOOT)... but who knows, right?!

Good luck! Hope you see some improvement soon!!!

HEY!! Looks like we have a date lol. I have my next infusion Dec 13th also! Are you morning or afternoon?

I've been off the pred for a month now, but dealing with the after effects.

I am having alot more symptoms since the remicade too ... I am feeling weird pains in my gut, a few twinges last night had me in tears. And I had ELEVEN bowel movements yesterday which is way more than I've had for quite awhile now. I almost feel like the remicade has sent me backwards. I hope not.

 

[j.bug]

HEY!! Looks like we have a date lol. I have my next infusion Dec 13th also! Are you morning or afternoon?

I've been off the pred for a month now, but dealing with the after effects.

I am having alot more symptoms since the remicade too ... I am feeling weird pains in my gut, a few twinges last night had me in tears. And I had ELEVEN bowel movements yesterday which is way more than I've had for quite awhile now. I almost feel like the remicade has sent me backwards. I hope not.

Hey Dee, I would call your GI, and I know how stubborn you are!!! BUUUUUUT, this is a huge medication. And any new symptoms after Remi, you can't ignore. I would atleast call and inquire if it could be due to the Remi. Don't Be Stubborn!!!...it's not worth risking your health. I didn't know you were having worsened symptoms...I'm sorry!!

My surgeon cleared me to go back on Remi, which is a huge relief, because all of my symptoms seem to be getting worse by the day, which actually is a good thing, as it means that the drugs are doing their job!!!!! I get my infusion in two hrs!!

Hugs Sweet Dee!!!! :hug:

OH! and ps, I would start a journal. write down everything, what you eat, how many bms a day, when you hurt, how bad you hurt, etc...It all gets hard to remember, and this will help when you see your GI.

 

[spinnychick]

You're the best j.bug, I just wanna reach into the computer and hug the hell out of you everytime you offer me so much support!! I will wait out a day (stubborn Dee) and see if pain subsides. I've got shopping plans with Mom this afternoon, homemade suicide hot chicken wings for dindin and family movie night, so nothing is messing with my day. Pain, pain go away lol

 

[j.bug]

You're the best j.bug, I just wanna reach into the computer and hug the hell out of you everytime you offer me so much support!! I will wait out a day (stubborn Dee) and see if pain subsides. I've got shopping plans with Mom this afternoon, homemade suicide hot chicken wings for dindin and family movie night, so nothing is messing with my day. Pain, pain go away lol

Oh...my...goodness!! You can eat suicide wings???!!!!! There is NO way at all that my stomach could handle those now!! or my esophagus for that matter!!!! Its been a long time since I have been able to eat spicy, and I used to love it. :wub: Oh spicy food...

You are so darn stubborn!!! I wanna reach in the computer and SHAKE the hell outta you!!!!! :lol: Just be careful ok? Nothing, not even suicide wings (heheh) is worth your health!!!

You know I am always here for support!!! :heart:

 

[thisisme]

HEY!! Looks like we have a date lol. I have my next infusion Dec 13th also! Are you morning or afternoon?

I've been off the pred for a month now, but dealing with the after effects.

I am having alot more symptoms since the remicade too ... I am feeling weird pains in my gut, a few twinges last night had me in tears. And I had ELEVEN bowel movements yesterday which is way more than I've had for quite awhile now. I almost feel like the remicade has sent me backwards. I hope not.

haha, we can count down to the 13th together then! I go in the afternoon... i prefer it that way, as I get in a half day of work, then infusion.. then home to sleep
The pains in your gut don't sound to great! You should take J.Bug's advice! I havent had any pain related to the infusions... just nausea and headaches. I have had pain lately... but I also just got over the stomach flu, and I did hear that it can rehash things .
Hopefully remicade works for you! I would talk to your GI re: the pain though... and hopefully once you get more loading doses in you start to see improvement!

 

[spinnychick]

Oh...my...goodness!! You can eat suicide wings???!!!!! There is NO way at all that my stomach could handle those now!! or my esophagus for that matter!!!! Its been a long time since I have been able to eat spicy, and I used to love it. :wub: Oh spicy food...

You are so darn stubborn!!! I wanna reach in the computer and SHAKE the hell outta you!!!!! :lol: Just be careful ok? Nothing, not even suicide wings (heheh) is worth your health!!!

You know I am always here for support!!! :heart:

Since my May diagnoses, I have had ZERO trouble and can eat everything, no issues at all (touch wood), but I am supposedly not in remission either. Maybe once I get into remission foods will bother me. Stress triggers pains for me though, big time. No shaking me please j.bug, I'll shake you right back missy! :heart:

 

[j.bug]

and hopefully once you get more loading doses in you start to see improvement!

I hope the same for you!!!! I know that Remicade is working for me, but it is very sowly. Makes sence that you would take a while to heal, when you took so long to get so bad.

Some people see improvement after their first dose of Remi, even if it is just decrease frequency and urgency of BMs. I really do hope that it starts to work for both of you VERY SOON!!

As always, I am sending good vibes!!

HUGS AND SMILE!!!

 

[j.bug]

Since my May diagnoses, I have had ZERO trouble and can eat everything, no issues at all (touch wood), but I am supposedly not in remission either. Maybe once I get into remission foods will bother me. Stress triggers pains for me though, big time. No shaking me please j.bug, I'll shake you right back missy! :heart:

I dont doubt that you would shake me right back!!! Your tough as nails! I dont think remission will effect what youre able to eat. Hey, did you know I was DXd in May too?! I've had CD since I was 13, but just diagnosed in May. You are synced up in some way with everyone in here!!!

 

[spinnychick]

haha, we can count down to the 13th together then! I go in the afternoon... i prefer it that way, as I get in a half day of work, then infusion.. then home to sleep
The pains in your gut don't sound to great! You should take J.Bug's advice! I havent had any pain related to the infusions... just nausea and headaches. I have had pain lately... but I also just got over the stomach flu, and I did hear that it can rehash things .
Hopefully remicade works for you! I would talk to your GI re: the pain though... and hopefully once you get more loading doses in you start to see improvement!

I'm in the afternoon too, we should post on here and chat if you get bored. I got quite sleepy last time and dozed off for the last hour. I will def monitor the pains and if they don't subside will call the dreaded GI.

 

[spinnychick]

I dont doubt that you would shake me right back!!! Your tough as nails! I dont think remission will effect what youre able to eat. Hey, did you know I was DXd in May too?! I've had CD since I was 13, but just diagnosed in May. You are synced up in some way with everyone in here!!!

YAY we are diagnoses buds! We can celebrate anniversaries together lmao :ytongue:

 

[j.bug]

YAY we are diagnoses buds! We can celebrate anniversaries together lmao :ytongue:

:ybiggrin: :cheerss: Wait, is this something we really wanna celebrate??! :ylol2:

 

[spinnychick]

:ybiggrin: :cheerss: Wait, is this something we really wanna celebrate??! :ylol2:

Lol

 

[j.bug]

Soooo, I'm gettin my infusion right now. I've never had a bad reaction, but I think I might be today

 

[spinnychick]

No bad reactions for you allowed or I'll shake ya.

 

[Lisa]

Soooo, I'm gettin my infusion right now. I've never had a bad reaction, but I think I might be today

What's going on?.......Hope you are ok and don't be afraid to let the nurses know something may be going on!

 

[thisisme]

Some people see improvement after their first dose of Remi, even if it is just decrease frequency and urgency of BMs. I really do hope that it starts to work for both of you VERY SOON!!

Oh how it must be nice to see improvement after only one infusion! One can dream! lol

 

[thisisme]

I'm in the afternoon too, we should post on here and chat if you get bored. I got quite sleepy last time and dozed off for the last hour. I will def monitor the pains and if they don't subside will call the dreaded GI.

Haha, definitely! The last two times I went the room was full... but no one seemed to be the talking sort. lol. I can't manage to doze off... I wish I could! I am too anxious in there and need to see whats going on.. I fight the sleep until I get home!

 

[spinnychick]

Haha, definitely! The last two times I went the room was full... but no one seemed to be the talking sort. lol. I can't manage to doze off... I wish I could! I am too anxious in there and need to see whats going on.. I fight the sleep until I get home!

Lol the people in my room didn't talk either.

 

[Lisa]

The infusion clinic where I go only has 4 chairs.....no one really talks too much - although you can't help but overhear when the doctor comes in to talk to everyone individually.....

 

[thisisme]

I just found it funny... when my GI was telling me about Remicade to get started on it, she advertised the clinic as this great social place where everyone sits and chats about their GI issues, watch movies and get to know eachother, LOL...
My clinic has 6 chairs... and so far the nurses are quite social with everyone (as they seem to remember EVERYBODY) but I haven't seen anyone actually talk to anyone else!
I did have someone talking on their cell phone throughout my 3 hours last infusion.. but that's simply not the same! :shifty:

 

[Lowbudge]

Well I just finished my third infusion wrapping up my JumpStart. I was moved to Remicade afterthe 6mp was messing with my liver. So after my first infusion I had experienced a few side effects. Being tired more then usual and a headache that hung around for a day or so. But after the first few days. I got some heavy depression that sat with me for 3-4 days. The second infusion 2 weeks later was better and I went through that mess in about 3 days and then I felt better. Now this Monday I finished my final of the 3. WOW, I was beyond tired till mid day today. No depression yet but a headache that could have killed a horse. My heart rate was crazy high and the palpitations were driving me up a wall. It too went away this early afternoon.

So I see a pattern with the aftermath of the infusions. It all seems to last now for about 4 days. I am hoping this drug gives me a fighting chance at a normal routine with out the steroids and such. I just can't stand them anymore.

Anyway, that's my story on my first set.

 

[Beach bum]

Hope it works for you Low , at least after this it will only be every 8 weeks I presume.
I am on the 8 week cycles now and so far I have been very lucky with no noticeable side effects from the infusions at all.

 

[JoFowler]

Had my first treatment yesterday, and it went well. I was very sleepy afterwards.

One thing I noticed, is that for about a week now, I have been experiencing jabbing pains in my feet and legs- like a needle being shoved in...this was increased yesterday afternoon a lot. But not having that today yet.

Other than that, I feel pretty good today. Early yet and haven't eaten much yet, so we'll see.

 

[spinnychick]

How fast is this stuff supposed to work? Got juiced with my first dose Monday, had eleven bm's Tuesday, zero yesterday (maybe a block), and I'm at 6 today and it's early morning :O( So far remicade has made me poopier lol

 

[mreyn]

Ok, so as scared as I was for my son to start Remicade, and still am because of side effects that could show up... at the moment... he loves it. We went yesterday for his 3rd one, and in 6 weeks he has gained 12 pounds, his anemia is almost gone, his labs for inflammation are all good. The dr is going to add vsl #3.

 

[j.bug]

Ok, so as scared as I was for my son to start Remicade, and still am because of side effects that could show up... at the moment... he loves it. We went yesterday for his 3rd one, and in 6 weeks he has gained 12 pounds, his anemia is almost gone, his labs for inflammation are all good. The dr is going to add vsl #3.

It is hard to make the choice to use biologics. I know it has been scary for me, every infusion I have a semi panic attack everytime I go in. But I wound up having to g oa few weeks passed my scheduled infusion, and my symptoms were getting worse by the day. It's really working, and it give me hope for remission!

I am so happy for your son! Its must be terrible watching your child suffer with this disease! Its awesome that he is feeling better, and loves the treatment! I am sending good vibes to you and your son!!! :hug:

 

[j.bug]

How fast is this stuff supposed to work? Got juiced with my first dose Monday, had eleven bm's Tuesday, zero yesterday (maybe a block), and I'm at 6 today and it's early morning :O( So far remicade has made me poopier lol

Hi Miss Dee!!! It took until after the third infusion to FEEL a difference. However, I remember an ER trip in between #2 and #3, I didn't feel any better, (duh, I was in the ER lol!) but the Dr told me that my inflammation markers were getting better.

It can take some time. They say that if it isn't helping you after 14 wks, that you will have to try something else.

BUT, I always think about it this way, it took a long time to get this sick. The disease has done lots of damage. Looking at it that way, it would make sence that it will take a while to feel better!

Stay positive! You GOT this!!!!! Attitude makes a world of difference!!! Loves ya hun!!!! :heart:

HUGS AND SMILE!!!!! :hug:

 

[crohnette]

Soooo, I'm gettin my infusion right now. I've never had a bad reaction, but I think I might be today

How are you doing? Is everything ok? Hope so saying some prayers for you!:hug:

 

[crohnette]

Does anyone get the shakes or shaky feeling thoughout the body ever? This has been happening a lot to me lately and I don't know if its the meds or part of having CD? Help!

 

[spinnychick]

Does anyone get the shakes or shaky feeling thoughout the body ever? This has been happening a lot to me lately and I don't know if its the meds or part of having CD? Help!

Never really had the shakes, but sometimes get tingles, like body parts fall asleep. Oh and I get weird jerky twinges in my feet and legs sometimes.

 

[crohnette]

Never really had the shakes, but sometimes get tingles, like body parts fall asleep. Oh and I get weird jerky twinges in my feet and legs sometimes.

I get both of those things too. I just hate having the shakes. My hands are the worst but my legs get really wobbly too. It makes it hard to try and get things done. Life with children you know always something to be done.:lol:

 

[j.bug]

I get both of those things too. I just hate having the shakes. My hands are the worst but my legs get really wobbly too. It makes it hard to try and get things done. Life with children you know always something to be done.:lol:

I get the shakes all the time. I can't get my hands to stop!!! My legs are only bad when I stand up. I wonder if we are on one of the same meds. I know that some meds can cause it. Thats what I've always figured cause my shakes.

HUGS!!!! :hug:

 

[Clash]

spinnychick, have you had your vitamin levels checked lately? The tingly sensation can be due to vitamin deficiency like D or B12, I believe. I'm going to tag David because that is his area of knowledge.

 

[crohnette]

I get the shakes all the time. I can't get my hands to stop!!! My legs are only bad when I stand up. I wonder if we are on one of the same meds. I know that some meds can cause it. Thats what I've always figured cause my shakes.

HUGS!!!! :hug:

I am glad to hear I am not the only one. Yesterday I could barely text and today I am having a hard time typing, I am working on my children's book (something to ease the financial burden I am on my fam) and it is taking me forever, I used to type 65-75 wpm. Drives me crazy! Also, are you guys at all having short term memory issues? That drives me crazy as well, I used to take pride in my great memory and I am so forgetful now. :hug:

 

[JoFowler]

Yes, short term memory has been awful. Some days I feel downright stupid

 

[crohnette]

Yes, short term memory has been awful. Some days I feel downright stupid

I hear you! That is the worst. I tell my mom that all of the time. Like I just feel dumb! My kids sometimes end up getting the shaft too because of it and I feel bad, makes me feel bad when I forget to remind them their library books are due or forget that their spelling test is the next day and I don't make sure they know it! Ugh!

 

[JoFowler]

I hear you! That is the worst. I tell my mom that all of the time. Like I just feel dumb! My kids sometimes end up getting the shaft too because of it and I feel bad, makes me feel bad when I forget to remind them their library books are due or forget that their spelling test is the next day and I don't make sure they know it! Ugh!

I am learning to put reminders in my phone for EVERYTHING as they come up.

I also can't tell you how I walk into a room and forget what I was getting. It was worse on painkillers though lol I would rinse conditioner out of hair, turn off shower, and then forget if I rinsed. :yrolleyes:

 

[crohnette]

I am learning to put reminders in my phone for EVERYTHING as they come up.

I also can't tell you how I walk into a room and forget what I was getting. It was worse on painkillers though lol I would rinse conditioner out of hair, turn off shower, and then forget if I rinsed. :yrolleyes:

When I read that, it was like you were telling me my own story! I am exactly the same way. I have gotten out of the shower and forgot to rinse out my hair until I go to brush it. Terrible. Sucks.

 

[JoFowler]

When I read that, it was like you were telling me my own story! I am exactly the same way. I have gotten out of the shower and forgot to rinse out my hair until I go to brush it. Terrible. Sucks.

Here's the english muffin I put in microwave for what should have been a few seconds to defrost...took a phone call and forgot it....nearly burnt the lunch room down! lol Can still smell it a bit a week later!

 

[crohnette]

Too funny, now. At the time I am sure it wasn't but it is totally true.

 

[j.bug]

Again, I would blame the meds for that! Or, like Clash said, a vitamin deficiency. I know that I get forgetful more often than not now, but mine is longer short term than what you're talking about! Like today, I may have forgetten somebody I met yesterday. And dr appointment I almost never remember those, unless I put it on my phone!

 

[JoFowler]

Yes, I can laugh now! LOL

 

[David]

Clash is correct about the potential for vitamin/mineral deficiencies potentially causing tingling/jabbing/twitching. Obviously it may just be the Remicade as it does weird things to people, but deficiencies are EXTREMELY common in people with Crohn's and if you haven't been tested, I would strongly suggest it.

Tingling or itching without a rash in the extremities, the big one is vitamin B12

Twitching in the extremities, the big one is magnesium.

But in the end, if I had Crohn's I would, at the very least, request vitamin B12, vitamin D, magnesium, and zinc and get the actual results and share them as sometimes, "low normal" is NOT normal. But the more they're willing to test, the merrier.

 

[spinnychick]

I agree with the whole swiss cheese brain thing. Hubby laughs at me alot

 

[thisisme]

swiss cheese brain and me are best friends! I feel like Im constantly losing my words or forgetting things!
and as for the shakes.. I get them in my hands mostly.. not much in my legs though!

 

[SMark]

Whew, I'm glad that I'm not the only one with memory loss.

I was beginning to wonder if something was wrong with me. I've been on Remicade for just over a year now and I'm really starting to notice that my memory has been declining throughout the last year. I sound old right now, but at 33 I should have a good brain yet.

It sucks cause I'm an Engineer and my brain is my living.

 

[spinnychick]

I have only had one remi treatment and have memory loss so not sure but think it might be crohns itself and not so much the remi. I hate when you are mid conversation, about to say something and completely blank.

 

[crohnette]

I am so glad to hear that I am not the only one in this fight of memory loss! I wish there was a real explanation to this, is it remi, Crohn's, other meds or what that causes this. I have been harping on my self about it a lot, because it just makes me crazy. I am also 33 and somedays i feel like an 80 year old trapped in a 33 year olds body.

HUGS TO ALL!!!!!

 

[Thisdiseaseishell]

It seems like a bunch of people are just starting Remicade and looking for advice. I'm starting to lose track of everyone in the IV league! I thought it would be helpful for everyone on Remicade to make themselves known and share their experiences in one nice consolidated thread.

I've been on Remicade since January, every 6-7 weeks at a little over 10 mL per kilo. My infusions take for friggin' ever, but it kicks in within 1-3 days. And i like missing school.

I <3 Remicade.

I just started Remicade and i dont think my body can handle it ...Yesterday while i was getting an infusion i felt like i was gonna die i got hella sick throwing up dizzi feeling like i was gonna pass out you have you had any of these symptoms

 

[spinnychick]

I was fine during my first infusion. Big hugs to you. Are you any better today?

 

[thisisme]

With all the crazy concoctions of drugs they like to hand out, its hard to say which is working and which isnt!
I haven't really seen much difference since starting remicade (albeit I've only had my first 2 infusions so far!)... but I was finally pretty much pain free and tapering off the prednisone, so I figured it must be doing some good!
Now that I am down to 5mg a day of pred, the pain is back with a vengeance ... so I guess it was the pred all along! Ugh.
Here is hoping the 3rd Remi dose is the charm!

Good luck to everyone else!

and @ Thisdiseaseishell -- I hope you are doing better after that unpleasant first infusion...

 

[Jenny]

This is great! I start Remicade on Friday, December 7. I am a long time Crohn's patient who has had my entire colon removed and replaced with a J-pouch. That was in 2002. I have had a couple of terrible years recently with infections, abscesses and fistulas. I tried Humira in 2011 with no success - actually it made things so much worse as I contiued to have abscesses over and over, basically everytime I received the humira. Very painful!

So now we are to try Remicade in hopes of remission. I currently have two ulcers in the J-pouch and several fistulas. Hoping to close the fistulas and reduce the pain from the ulcers.

Anyone with a J-pouch and Remicade treatments? I am very nervous about this approach, but not much else left.

 

[spinnychick]

This is great! I start Remicade on Friday, December 7. I am a long time Crohn's patient who has had my entire colon removed and replaced with a J-pouch. That was in 2002. I have had a couple of terrible years recently with infections, abscesses and fistulas. I tried Humira in 2011 with no success - actually it made things so much worse as I contiued to have abscesses over and over, basically everytime I received the humira. Very painful!

So now we are to try Remicade in hopes of remission. I currently have two ulcers in the J-pouch and several fistulas. Hoping to close the fistulas and reduce the pain from the ulcers.

Anyone with a J-pouch and Remicade treatments? I am very nervous about this approach, but not much else left.

What is a J pouch? (sorry for my ignorance)
And big hopes that Remicade helps you to heal!!

 

[Arkansas Crohny]

In so glad I'm getting my last loading dose rite now,now praying for it to heal and remission!

Jenny, praying for everything go well for you on Friday!

 

[spinnychick]

In so glad I'm getting my last loading dose rite now,now praying for it to heal and remission!

Jenny, praying for everything go well for you on Friday!

Has your health improved at all yet?

 

[Arkansas Crohny]

I'm still bleeding when I have BM , im tired, joint pain but the batroom trips has slowed down. My Dr is going to give me one more week waiting on remicade to work . He said that will give the loading dose a chance to work . If not better he will do a scope look to see what's going on . He done blood work today checking all my levels plus the ones David had suggest ! So waiting on test to come back !!

 

[stevej54]

Had my second infusion of Remicade today. No allergic reaction, yeah. I am feeling the fatigue that I experienced after the first infusion. Still no crohns issues to report and I see the doc on Friday. I'm wondering if its the prednisone that is making me feel better or the remicade.

 

[spinnychick]

Had my second infusion of Remicade today. No allergic reaction, yeah. I am feeling the fatigue that I experienced after the first infusion. Still no crohns issues to report and I see the doc on Friday. I'm wondering if its the prednisone that is making me feel better or the remicade.

Are you on both?

 

[Beach bum]

Off to see the wizard part two today (was refused for my infusion on Friday due to UTI again ) been taking antibiotics and gallons of cranberry juice, so hopefully will get it done today