Trying not to (give on Remicade)

This is such a difficult disease to manage. It doesn't seem like Remicade is right for you if you are having so many side effects, but I do understand your fear of it being worse without it. Whatever you decide about the medication, try not to personalize it as a character flaw or a "quitter." It is not your fault that you have this disease and healthy folks who have never suffered with a chronic illness have no clue what it is like to struggle day after day. Try to get the best medical support you can including a second opinion if needed. Then make your best decision and don't look back and blame yourself if it turns out wrong later. We are all doing the best we can. Sending big hugs your way!

My son has this disease (not me) but as his mother I try to stay involved every step of the way. I know that this past year he endured two months of recurring C - Diff, being hospitalized for an obstruction (and a torn esophagus from throwing up so much), a small bowel resection all while trying to be a "normal" college freshman. What I have learned is that this is a tricky disease and that what works for a while may not in the future. I almost feel like it may never be to the point where he can forget he even has Crohn's so we talk about making the best of what sometimes feels like "the worst." I hope you can find some answers this week or next and choose paths that seem right! Best to you!

So Humira worked better than Remicade, i.e. didn't have any side-effects? What happened with the Humira then? I'm wondering if it's worth you switching to another anti-TNF, either Cimzia or Simponi. If I was in your shoes, I think I would have a go at treating the symptoms first, and then if that didn't work, switch to another medication. You sound quite miserable; rightly so. There is one user on here who got horrible migraines with Humira; she said that taking an antihistamine before her Humira injection knocked the headaches on the, er, head. It's a bit of a long shot, but you could try taking an antihistamine to see if that helps. If not, maybe stronger migraine meds might help.

Joint pain can be an absolute bear to treat. Have you seen a rheumatologist about it? I've no other suggestions on that front, I'm afraid.

Fatigue is another thing that is an absolute bear to treat. Jen is right when she says it's common even in remission. So many things can cause it, it's ridiculous. Anyway I'm feeling fatigued right now, so I'm going to wrap up this post >_>.

Hi All, Thank you so very much for your comments! It helps so much!
@gumby44, you're right, definitely not the right choice of words, I was in such a yucky way I was not myself. I was having a rough morning when i wrote that.
@Jenn77, I wish it was only fatigue too, haha!I think one of the worst thing is waking up with pain because it starts the day off in a negative way and its so hard to get moving. I actually once again don't think i realized just how bad and consumed with pain I was feeling because it had gradually grown to overwhelm me and i was still functioning but it was taking every bit of energy i had. Every test and scan was coming up with no active disease and yet i was still having some GI discomfort, body and joint aches, etc. My doctor is the best I have been to. I had gotten a number of opinions a few years back and settled on my last GI but I did not feel like he knew how to best deal with my health once the humira failed and wanted to blame everything on stress and was using CRP as the sole determiner as to whether there was anything really wrong, despite my rheumy at the time saying i could have alive disease with out it being elevated. My current doctor is amazing and has been really good at communicating, discussing options and looking for solutions. Its still hard though when your not feeling great and things take time to make a solid conclusion.

The only thing that came back with any answers was a recent test that showed I might be developing serum sickness. but despite not feeling great I still had made a lot of progress so neither my doctor nor I wanted to give up on the remicade yet, so the current plan has been to get one more dose of remicade and see what happens.

@pb4 The GI thought it was crohns related until those results came back and nothing is showing inflammation. I am confused by it because I did not have any of these problems to start with though i have had these issues during bad flares as well as when I had problems with Humira so I'm still not ready to make a determination. The meditation is a great suggestion and is something i have always wanted to take up. I need to make more time for it. I appreciate the quotes and i try to live by a similar philosophy though i was a bit off the other day and it helps to get the reminder and I too had plenty to deal with before crohns came along. thank you!

@Bettysue your son is very lucky to have your support! I am sorry for the struggles he has had to deal with with this disease but i agree it is trying to find the good in bad situations that help me get through as well.

@NCOT humira was great at first, no side effects, healed my fistula, i felt fantastic and could tell it was working. then about 7 months in i noticed close to the next dose i would have more joint and body pains and thought it was a sign i needed it because it would be relieved by the next injection. then I started to develop severe stiffness in my knees, leg spasms that would wake me up at night, restless leg syndrome and strange burning pains, and sensations like i was wearing cold boots just to name a few. the body aches and pains got worse. the rheumy thought it was the meds but there was no real evidence. the GI wast sure and the neuro said quit the humira. I was concerned it would make the joint pain worse since that was still helping it a bit but when i stopped several weeks later everything got better and went away! the rheumy wanted to start me on methotrexate but i was not ready for that and the GI felt i should wait because he wasn't sure what to make of it. i was fine other than some mild aches in the evening that always went away after exercise and my ESR and CRP stayed fine. i did have a few pains i complained to the GI about but since the blood work was fine he figured it was okay. I had no symptoms except for one or two minor bleeding episodes from last august until i was surprised by the partial obstruction. So all of these joint pains and body aches were nonexistent until i was about three months into remicade.


so to continue the long story I got my infusion of remade friday and felt great the next two days. It once again reminded me how I'm supposed to feel. I actually woke up with out gut pain which hasn't happened in months and didn't happen the last time i received remicade! but now the joint and back aches are setting in again:( does any one else only get two good days out of an infusion? do you not always get relief from an infusion since the one I had two months ago didn't feel like it helped at all but this one did, though the joint and body pains are new since the infusion two months ago? Im still so confused!!

Take heed of your gut, pun intended. Stop taking Remicade if you are experiencing problems. It's not quitting, it's self preservation. It worked for about a year for me then the weird stuff started, including memory loss. That was 2 years ago. Still experience some residual memory effects. Stop if you don't feel right.

T
Cimzia didn't work and I have my doubts Entyvio is working. My options are limited. GL