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I bet. I am too. Good luck with the infusion tomorrow. :) I have mine on the 28th. eight weeks is such a long time! :ybatty:
 
Please help! Opinions needed! I have been approved for remicade and should be starting my first infusion very soon. My question...how sick were you when you first started this drug? I have symptoms such as diarrhea (but not everyday)...basically I'm either constipated OR going several times a day. Fatigue is often and very hard to deal with. I don't have pain very often - unless I have an obstruction or inflammation that puts me in the hospital. The last time I was in the hospital was in September. Several meds haven't worked well for me. I wonder if I'm making the right decision to start remicade. My doctor says that I need to prevent the disease from destroying my body for worse. Through the years, I have just dealt with various symptoms and always refused to take meds but my new doctor who I met when I was last admitted in hospital tells me that I need to take care of the disease and not ignore it. So that is why I would like to know how serious your symptoms where when you made the decision to do the infusions? Maybe I'm in denial...or maybe not?? I just don't know if starting remicade is too extreme for me.
 
Your Dr is right, you need to get your disease under control. I've done the gambit of meds that haven't worked, remicade hasn't been the fast acting solution for me that it has been for some others, but it has definitely helped. You want to try to put off surgery for as long as possible. If your dr thinks that remicade will help, then you should try it.
 
RosieM said:
Please help! Opinions needed! I have been approved for remicade and should be starting my first infusion very soon. My question...how sick were you when you first started this drug? I have symptoms such as diarrhea (but not everyday)...basically I'm either constipated OR going several times a day. Fatigue is often and very hard to deal with. I don't have pain very often - unless I have an obstruction or inflammation that puts me in the hospital. The last time I was in the hospital was in September. Several meds haven't worked well for me. I wonder if I'm making the right decision to start remicade. My doctor says that I need to prevent the disease from destroying my body for worse. Through the years, I have just dealt with various symptoms and always refused to take meds but my new doctor who I met when I was last admitted in hospital tells me that I need to take care of the disease and not ignore it. So that is why I would like to know how serious your symptoms where when you made the decision to do the infusions? Maybe I'm in denial...or maybe not?? I just don't know if starting remicade is too extreme for me.
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When i started remicade (in Dec) my symptoms were D, Joint and overall body apin BAD, stomach pain (not the worse i ever had..but it was there), and vomiting and fitigue. I also had a fistule between my vag and butt.

i have had the infusion 2 times now (my next due in the 23rd). and it has helped with mu D, it has made my fistule go away. I still have the body aches. My stomach was feeling great but within the last week it atarted hurting again...and nausea is back.

Good luck. I personally think its a scary drug. i jave to take bendrly before i take it as i had an alergic reaction my first time and my hair falls out like crazy now. But i THINK (dont want to jinx it) its working
 
Glad it is going well. My son said the same thing last week. He kind of liked getting out of school and laying there for a few hours watching a movie.
 
Had first Remicade treatment yesterday. Seemed to go ok. Today I'm exhausted and feel shaky. Have had a headache since infusion started, which I did expect so taking Tylenol. Does this sound pretty normal?
 
Maxwelljax. Yes I get the same way for the first couple of days. I'll get annoying headaches and I'll be so shakey and sleepy and I'll usually sleep and hr or two after I get home from it till the next morning. And then I wait four to five days for it to kick in and I'm good until about the 6 week mark and then I'll feel crappy for two weeks until I get my next dose. Good luck to you, and I hope it works well!
 
I am soooo exhausted. Like my muscles and bones are melting. I got a little headache at the end but nothing like the Humira migraine.
 
These side effects WILL lessen! I've been on remicade since 2008 and definitely felt everything carrollco and maxwelljax experienced! But mine got better
with time! Make sure your premeds include Tylenol and plan to take it again later that day! Try to get on a schedule where you can get your treatment in the morning and have the rest of the day to recoup! I also make sure I don't have anything big/important coming up in the day or two after my treatment. Stick with it!
 
@Carrollco, I wish you luck :) it was also my last shot before surgery. It did its job and I got surgery to take out the damage I had from cd . im happy to say I look forward to getting my remi. I get mine in the morning and also make sure I don't have plans like Kristi. Although I wish it was every 6 weeks at 10mg instead of every 8 weeks. I always flare up in the middle of the 5th week, sometimes if I'm lucky itll last to the middle of the 6th week but that's it lol. Oh well :ybatty:
@Maxwelljax, have fun at work! I can't really function the next day lol to tired and sore. I wish you luck and no headaches! :thumright::thumleft:
 
@nini_mini, thanks. I'm up and going. Still have a bit of a headache and sore, but better. Will always make sure I'm off at least day after if not two. Best news is fistula seems better. Maybe too soon to be from remi. Have been on flagyl for last 3 weeks and that has helped before. But maybe this is going to work???
 
@nini_mini - have you talked to your GI about switching to 6 weeks? I started at 8 but after about 9 months we switched it to 7 and then about 6 months later we upped it to every 6 because I too was increasingly symptomatic in week 5/6. He was very open to change. I wish he'd write for every 5 but my insurance won't cover closer than every 6
 
Jack had a headache and extreme exhaustion as well after his first dose last week. The exhaustion didn't hit until later in the evening and I know he was tired in class the next day as well as he told me he kept falling asleep at his desk. Good thing I had already given his teachers a heads up. We'll see what happens next Thursday at next infusion
 
Kristi. Yes he said he can't until he gets permission from my insurance company. And they cover almost all of it so im pretty sure theyll let him do it. I should know on the 28th when I go in for my next infusion.
 
Maxwelljax. A day off is probably a good idea! Lol and im happy about the fistula! Theyre nasty little buggors. I didnt think anything was going to work for me untill I tried remi. I cant say its my miracle drug but it sure has helped alot. I hope it works wonderfully for you and closes the fistula. :)
 
I am up and around today. Still a little headachy but better than yesterday. Thank you to everyone. Your support means a lot.
 
To Kristihelene: I wondered how long they could access the same vein before it would scar up too much. They can only use one of my arms for IVs and have discussed a port with nurses giving infusion, but Dr. is very hesitant, worried about too easy infections. I notice no one answered the question on who has ports. I would be interested in a reply too. Looks like that time is coming up for me soon. Had three people attempt a recent IV before surgery. They did not want to use my hand (where infusion goes).
 
I'm starting Remicade on 1/23 I'm scared because this is the last thing before surgey. Imuran did not work! On that for 4 weeks and then start Humira and on that for 6 months!!! I'm so upset I just want to start to feel normal again!!!
 
Day 2 after first dose and I actually made it to work. Headache really minor and handled by Tylenol. Body aches manageable. Hoping for some definitive relief of Crohn's symptoms but I know it's too early. Thanks for support!
 
nini_mini - my son's fistula cleared up almost immediately after his first dose of Remi. Truly amazing! He, too was on abx, but his GI said it was most likely the Remi doing its thing.

lblair - Hope it works for you! We've set a record here of 11 weeks with no symptoms. Lovin' Remi :)
 
I am much better today AND I haven't ANY pain in my rectal area EVEN after pooping. Too soon to get excited as it could be a fluke, but no pain? I never am pain free. No burbling gas either.
 
@Mehita, that's great news! I'm glad its working so well for him! :)

@carrollco, its great isn't it?! I love it when it takes away all pain and it will for a bit as it gets in your system. The burbling gas relief is so nice! I'm pull in for it to work for you! :)
 
Hi everyone,

Switched from Humira to Remicade about six months ago and recent colonoscopy results show I'm finally improving.

I had an infusion yesterday and later noticed small and different shaped dark red spots scattered below my shoulder but above my elbow. Mostly were a couple inches below shoulder and seemed to end in a straight line.

This straight line of dots seemed close to where the nurse tied the rubber band but that was over my shirt.

IV was on top of my wrist and no dark red spots around.

Not itchy and Didn't feel very bumpy if at all.

Today it's lighter red colored.

Just curious if anyone experienced this or know what it could be?
 
Maybe tiny ruptured blood vessels from the band? Kind of like when kids suck on their arms and get the little red dots.
 
@Judith C - had my appt with GI yesterday. He is putting me in touch with a vascular surgeon asap as he is on board with port decision! He's not only worried about access for remicade but also the dangers of if I end up in ER and they can't get get access! Not sure where you get your infusions, but I go to an infusion center within a hospital that specializes in women's oncology so there is also a chemo center. Because of that, they're IR places hundreds of ports a day and does constant port management so that is where in choosing to have mine put in!!
 
@kristi you lucky dog you! When I was in the hospital in November I had a little baby iv (yellow) in my left wrist because they couldn't find any veins or any that were big enough for a blue iv. And they fought with my right ac one for the surgery iv which to this day I have no idea how that lady got it in there. Well needless to say my little one leaked the next morning and fought with iv after iv while in there 10 days. My veins are so bad and some of them are so scarred from trying over and over. Anywho I went through 5 or 6 ivs while in there and a buch of blood work day in and out (also blew 2 veins trying for ivs and one iv infiltrated and it made my arm swell twice its size! Yikes!!). Had on one day 3 different nurses try to get one started even the head nurse on the ward and they had to get a lady from cv icu to come and do it because all the other nurses had tried and failed to get one durning the week.:ybatty: It was nuts. They asked me about getting a port because my veins are so bad and I agreed to it so did my attending (love her) but my gi doesnt think I need one. Ugh well dec. 3rd came and it was time for remicade. My veins wernt healed up from the hospt. As it was only like 2.5wks later. And it took 3 tries and bothe nurses to get it. And they barley got the they used. And they asked about me getting one also. Pretty much I need one because my veins are all pretty much spent in my arms and certain ones I cant have them try because theyve been blown over and over, basically my tiny veins that roll suck ass and hate ivs, and I most likely need a port but untill my gi signs off on it I'll have to continue to struggle with ivs and or blood work. Its so retarded! But alas im very happy your going to get one!! Thats exciting news! :).

- sorry if I repeated myself a bunch of times. My pain pill is starting to work :).
 
@nini - what about having your PCP write for it? Mine agreed to if GI had said no. Beyond the annoyance of getting stuck, having different people try, etc, it's a safety issue to in an emergency!! I'd push for it if I were you!!!
 
Kristi. You aint kiddin! Although id have to get stuck to get it done lmao thats half the battle
Lmao. I'll deff. Ask My rheumy on the 28th when I go get my next remi dose. That along with getting something added for joint pain and the port. Gonna be a busy morning! Lol idk the last time I saw a reg. Dr. Lmao
 
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Saw the GI doc today. Too early to determine if remi effective after first treatment but ordering Solu-Medrol during the next infusion to see if that doesn't help prevent the side effects I.e. 2 days of shakes, body aches, etc. Also ordered Fiorcet for headaches. Headache lasted 4 days after first infusion. Hate to take a narcotic. Anyone have any luck with something else for H/A after infusion? Gearing up for the next one on Monday.
 
Hey everyone, I hope that you all are doing awesometasstic!! Just a little update, we were approved for the Remicade and my son had his first infusion on the 21st and will return for the second infusion on February the 4th. He said that he is feels great (no pain, less bathroom visits). The only thing that he did not like was the I.V., they had to stick him four times. I will continue to pray that he thrives and that Remicade puts his ulcerative colitis in remission. Have anyone ever experienced any side effects from Remicade?
 
Hate when a kid has these awful diseases and I can't imagine how you must feel going through this with your son. I had my first remi infusion on 1/13 and had quite a few side effects, although none that I couldn't handle. Had headache that lasted 4 days, shakes and body aches for a few days and was exhausted. But after a couple of days I was feeling much better and back to normal quickly. I don't know if that is normal for all. My GI doc is ordering Solu Medrol next time to try and control these side effects. From reading through the many posts I see that some of these effects are pretty standard, although varying in severity. I have a fistula that won't heal but other symptoms are in control with Entocort so I can't tell you how quickly I will respond but from what I have learned from others symptoms can improve almost immediately. Praying that is the case for your son.
 
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@BWNTB06- I hope it does awesome for your son! Its helped my crohns and I feel better now that I'm on it. Side effects vary from person to person. Mostly head and body aches and exhaustion. Usually calms Down after a couple days.
@maxwelljax- what's sold medrol? And I had a fistula and the remi started to close it within 3mths ish. My other symptoms are covered but pentasa and entocort. I hope your fistula clears up fast! They're nasty bugger's!
 
Solu-medrol is a steroid. I guess they will give it IV along with Benadryl prior to starting the infusion. This is supposed to help with controlling adverse effects. OMG yes they are boogers! I have had this fistula since getting an abscess in Aug 2012. Operated on in Feb 2013 and plugged. Didnt work. To make matters worse my insurance company denied the claim, after pre certification. Said it was experimental. Surgeon begs to differ. I am still fighting the insurance company. Appealing for the second time.
 
BWNTB06 - My son has had three infusions and no side effects (knock on wood!). I think the Benedryl makes him a little sleepy, but he fights it because he wants to play video games the whole time.

For the veins, our nurse told us to load up on fluids the day before and morning of to plump them up. At our clinic they also offer kids Emla cream (lidocaine) to numb up the skin and make the poke a little less painful. Do you think the problem was the nurse or the vein? You can always ask for an experienced nurse if you think that was the issue. Happens all the time.
 
@max- yeah I'd deff. Go for the second appeal thats crap if it was pre certified. Best of luck to you on it.
@mehita- yeah she told me to do the water too. That doesn't help at all just makes me look like I gained weight on the scale lol and yes! I get the spray every time because I hate needles! I should be amune to them by now but no such luck. Haha and no its not the nurse. The nurse that sticks me is the only one who can get a vein.I also get a hot or warm compress if they don't go and then most of the time that doesn't work either. Its a hassle. My veins are just really little and hate me, nurses, and ivs.
 
nini_mini, you probably already do this but my hubby has really tiny veins and he tells them to use a pediatric needle, it works much better.
 
i started infliximab 3 moths ago and i smoke weed sometimes and nothing happen and i wanted to try acids but i scared, so if anyone has ever tried please tell me if you were fine or not. And i don't know if anyone cames here or not but i had to try, and good luck to you all
 
Okay, that's the one I usually get. They tell me its the smallest one they have and they use it on kids. Haha still takes at least 2 sticks to get it.
 
This is my first time in the Remicade group...would it be strange to say I'm happy to be here?!?!? Maybe better to express I'm excited for possible remission!

I have my first ever dose tomorrow at 1pm here in Texas!

From what I have read I am planning on Tylenol for headaches (I can also take Fioricet for migraines with me if I should) and I am on 40mg of Prednisone (was on Solumedrol in the hospital from Jan 13-21 then switched to oral Pred upon discharge). It sounds like I should take Benadryl as well?

Well, just wanted to reach out and say hello! I hope this one works well and is tolerable!!!
 
hey everyone, I just wanted to thank you all for reading and responding to my post...it really does mean a lot to have people in your corner fighting with and for you (advice coming from people who are going through the same situation helps). My son is doing wonderfully since the remicade infusion. He is going to the restroom less and has so much more energy. so far so good :)

@Mehita, I think it was a combo of both. Not only does he have U.C. but he also has sickle cell anemia and gets dehydrated quickly. So we will make sure to load up on fluids the night before his next remi. appointment...which is 2-4-2014.
 
Welcome Suszanne,
No benedryl here but my son has only had 2 infusions and so far no reactions. It is amazing the difference.
 
So far Makena's Remicade infusions have been a huge blessing. She's gained 7 lbs in 4 weeks, her tummy pains have decreased (still gets them, but not nearly as much) and her fistula is shrinking. I'm very happy with it so far.

However, I don't know what is up with today, but I've gotten two messages from friends on facebook (whom I haven't spoken to in years) that both had random advice for me to "watch out for Remicade and be careful giving it to her." First of all, thanks for the advice but - its a little out of left field. And might I add, rude. How about asking how she's feeling and how the remicade treatments have been working so far?? Maybe I shouldn't react so defensively, but have they any idea what its like to have a child in so much pain that you are willing to pump them with medicine that you are hoping will work? Have they ever had to hand over their childs livelyhood to some Dr, hoping he knows wth he's doing?? Ugh! I'm so irritated right now!
 
Jmrogers4 said:
Welcome Suszanne,
No benedryl here but my son has only had 2 infusions and so far no reactions. It is amazing the difference.
Click to expand...

Isn't it? When we leave the hospital Makena is in such a good mood. Sleepy from the benadryl, but I can tell she feels so much better! I love the Remicade so far and can't wait to go back to Oahu for out next treatment on Feb 7th. We're on a 4-6 week schedule now.
 
Yes It's a whole benefits outweigh the risks, do they think we came to this decision easily. We've read all about the side effects, the horror stories, etc. But we've also read the success stories (something they have probably not done) nor do they see the difference in our children who are able to enjoy a normal childhood with this drug.
Jack was just saying in the car how much he likes remicade because he feels so good, he says he really feels like a normal kid. - just about brought tears to my eyes.
I'm so glad she is feeling well on it and just ignore those people who really have no idea what she is like without the remicade. You are doing fabulous and making the right decisions for your daughter
 
T-minus 12hrs till my next infusion! This one needs to knock this flare back some. Its not natural to sleep this much. Also I need to eat more than little bits here and there. I feel like a rabbit just nibblin away. I won't be surprised if I lost a couple pounds these past 2 weeks. Just hope I get my full 10mg!
 
So Solu-medrol seems to have helped with remi infusion #2. No headache. No shakes, at least not yet. My vision is weird and my coordination is a little off. But... Im much better with this than last time.
 
Good good. I go for mine at 9 tomorrow morning :) and I plan on sleeping all day afterwards into Wednesday. I'll try to eat something but I probably won't Lol. Oh well. Sleep is needed with remi.
 
I too took a lot of nsaids before I knew better. The only thing I miss is aleve for my knees. Tylenol just doesn't do the trick.
 
OMG... I agree about the pain. Tylenol does nothing. I take tramadol at night. Never realized it did anything til I forgot to refill it and went without a couple of days. Lortab does help but I can't take it several times and still function. Nothing works better than Alieve, figures doesn't it lol! But not only does it contribute to thinning my intestinal wall, and I'm quoting here, but it also prevents production of rbc's and platlets which makes it difficult to keep you hgb above 5. Never a good thing!

Good luck tomorrow! Let me know how you do.
 
I will be starting Remicade sometime in the next few weeks for my UC. Also found out my friend with Crohns will be starting probably the same week as me, so I have a remi-twin haha. Any tips for the first infusion? I am crossing my fingers this puts me back into remission, been in a flare since September.
 
I didn't know about hgb! Lol wicked. And yeah the thing that's bad is the only thing that works for knee pain lol. I take tramadol too! and did the same about the refill. And thanks! Will do. My veins better poof up or I'm gonna flip
 
LNS87 I've had my first 2 remi infusions and the best advice I have is make sure you have a day or two off afterwords to rest. Also be prepared for headache and body aches. Everyone seems to tolerate this stuff differently so communicate to doc if you have problems so they can order appropriate meds to help you tolerate it.
 
mini....my whole body temperature drops by the time the infusion is over. I actually bring my own blankie, and am going to buy an electric throw blanket just for this purpose. LOL
 
I hear that! Lol my rheumy infusion office has stacks of blankets so I bring a jacket for my arms and take a blanket for my legs. And coffee! Lol
 
Wow...hadn't heard anything about drop in temp or feeling cold. None of that happens to me. But now I understand why the nurses keep offering me heated blankets throughout.
 
First infusion is done! Cold, very cold going in but other than that everything else was wonderfully uneventful!!!
 
Finally home from the medical fun today. Interesting note. I got put on methotrexate injections today. Got the first one in my arm after my infusion was done. Fun note. I have a cool little sharps container! Lmao :ylol: :ybatty:
 
Nini...wow a new drug. How fun lol! Never a dull moment with this thing. Maybe that will help you get through the 8 weeks without a flair up. Fingers crossed for you.
 
Plan on sleeping soon :) and yeah you ain't kidding! He said that even though I got surgery my stuff still isn't under control enough for his liking. Bascially its just running rampid and doing its thing without much help from meds :voodoo: So to help with my joint pain he gave me mtx. Injections With folic acid. And he said it should help the crohns a bit too. He told me that my insurance company won't let me do remi every 5 or 6 weeks I have to have it at 8 because its not being used for ra. How stupid lol oh well. So I hope it works. I'll have to stop it if it messes with my liver though. And then its onto 6mp or imuran.... Joy. Lol :ybatty: :yrolleyes:
 
Nini - I too take Remicade (going on 5 yrs) and recently added methotrexate - I have to say I definitely have side effects w/ the methotrexate but hoping the combo does the trick!
 
Nini..........my BC/BS pays for my Remi every 5 weeks, but I also have Medicare that is primary. The talk around this part of the country is going towards cannabis, and it seems to help a lot of people. I'm kind of ok on my meds for now, but am watching the research being done on medical marijuana, and won't hesitate if the Remi stops working. Medically it is legal in my State, I don't know about Florida. Hope you feel better soon.
 
Had my second infusion of Remi Monday, slept all day yesterday, today I have to say I feel pretty good. Went to work, plenty of energy, still have a bit of a headache. Most importantly joint pain minimal with Tylenol only and I think, although Im afraid to say it, fistula is smaller! No drainage and no pain!!
 
So glad Remi working for you guys. Been on it a year now and not in remission but doing much better than without it. Definitely solved my fistula issues. Doc just added Enticort to see if that helps. Setting up consult with IBD Clinic at University of Maryland Hospital to get their input. Taking Topamax for headaches, but also experiencing joint pain and memory fog still.
 
Hang in there and don't give up. A year ago I thought life would never be normal again. Entocort took care of a lot of my symptoms. All but fistula and joint pain. Remi will hopefully help that. Just have to keep at it til they figure out the right combination. Stay strong.
 
I haven't found any med to help with the memory issues - So currently seeing a cognitive behavioral counselor who is helping me with memory strategies. It was becoming a true problem in my marriage, so I'm glad to have some concrete strategies in place!!
 
Kristi- I hope it works for you too. Im really tired, joints are killing me yada yada. I hope it works for me too! Oh and my rheumy said he has no problem writing the port but he said he usually only does it if they cant get an iv in. And he said since my immune system is now tanked it would be easy to get an infection from it since its a plastic and metal thing living in my body haha. He told me to really think about it. And if I still want it hell sign off on it. Lol guess ill have to think!

@judithc- you lucky dog lol he said if it was up to him he would bump it to every 5 weeks but he said he cant so I have to deal with 8. Im waiting to hear back from the ssi people for disability and medicare as a supplement insurance company. I wish you luck with the cannabis. If you choose that. My mom wants me to try it but I dont really want to lol. Not my thing.

@max- yay!! Im happy you have energy after two days. And that your joint pain is taken care of by Tylenol! Thats awesome. Im taking gnarly stuff for mine like half an oxy because everything is hurting like you wouldnt believe. Lol im also really glad about your fistula. Thats really awesome. I really hated mine. And im glad its gone. Hoping yours clears up fast! :)

@write2bheard- im on it and not in remission either. No where close to it. But I know if I wasnt on remi id be worse. Im also on entocort. (Love it!) Its really great. The remi fixed my fistula issues too. It seems to work really well for that. I hope you find a combo of things to help you get better. Its a challenge but being sick takes a toll after awhile. can i ask what topamax is? And joint pain is a toughy and memory fog, I haven't found anything for that either lol.
 
@nini - yes I understand the concern with infection! I'm on remicade and methotrexate so I too have no immune system!! As for the port, once it's fully healed the only infection risk is when they needle in, which is done as a sterile procedure anyway. I wouldn't recommend the port tho unless you really need it!!
 
High five for the no immune system club lmao :highfive: amd yeah I hear ya. Im sick of fighting to get ivs and bloodwork and when in the hospital going through ivs like water because they leak really fast or infiltrate or blow trying to get them. Its very painful needless to say. He understands that but hes still concerned giving me one just because yes they try a thousand times to get an iv they do end up getting one. So I guess ill wait it out. And ponder it. Lol it just seems easier and a non hassle to have have one you know?
 
Nini - I was 100% in same boat - and my thought was this - we struggle enough with all the pain and hassle of crohn's, why suffer with pain and hassle with IVs if that's something I can control?
 
We have completed the 3 loading doses of Remi for my son & are now waiting out the first 8 week maintenance dose. Too long of a story but the ins co won't let us bump up the dose because it's our first 8 weeks...BS...but whatever.:ybatty:
At 4 weeks it was like flipping a light switch and he went from being ok to being in an awful flare. This literally happened overnight. (They started him on prednisone...waiting to see if that works)
Was wondering if this happened this way to any of you?
And what got you on track, increasing the dose, shortening the interval, or both?
 
Gmama, my son C, was the same way. He did great during the loading doses, the turn around was truly amazing. But once we started the 8 week stretch he could only make it about six weeks. We first shortened the schedule, then we had to up the dose then finally added methotrexate. Now he goes every six weeks at the max dose and takes 7.5mg of MTX a week.
 
Gmama and clash. Mine also stops working soon. It usually lasts 5 weeks or if im lucky 5 1/2, 6 but its usually around 5 after that I flare right back up. I camt move mine up because of my insurance co
But I had the dose doubled to 10mg which hasnt helped but what can you do
Lol I got mtx added tuesday so maybe that will make it last a little longer
I wish your kiddies the best of luck with it
 
It's just so strange to me that it stops so SUDDENLY.
This is why I am always worked up...I'm in a twist on bad days because they are bad, but then I'm worked up on decent days because I'm just waiting for something suddenly to be bad! I hate the wretched disease!:ybatty:
I know all of you do too, of course
 
I ended up in hospital after first 4 week dose so they doubled my dose and kept me at 4 weeks. Finally moved to 5 weeks after about 9 months but can't make it to 6 weeks. Doc just added Entocort and I'm scheduled for consult with IBD specialists at University of Maryland Medical Center to get input on a plan that might help me get to remission. Between stomach and joint pain, and memory fog and fatigue I feel like life is passing me by. Hoping they figure something out. I feel for those who have to go without treatment because of insurance restrictions. There ought to be a law against letting patients suffer to save a little money.
 
Just scheduled my first 4 infusions. First dose will be on Valentines day - i figure its a treat to myself. I will be getting them at the hospital i work at so I will go right after I get off my shift at 8am and will most likely sleep through them since they said they will give me benadryl and tylenol pre meds. I am nervous but excited since I have been in this flare since Sept so I am crossing my fingers this is my miracle drug and I finally start to feel better. Glad to hear it has worked so well for so many of you! :)
 
Completely confused by what my body is doing. Can't decide whether I am improving or not. Was better after 2nd infusion. GI said I could start cutting back on Entocort. Have been taking 6mg since Monday. Joint pain, abdominal pain, and totally constipated. Actually had to take laxative. Was really worried about possible obstruction. Went back to 9 mg of Entocort and 2 lortab today and feeling better. Very frustrated right now.
 

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