HealingWell
Search Close Search
☰

Remicade 6 years - NO LABS EVER DONE!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/4/2015 12:48 AM (GMT 0)
I have been diagnosed with UC since 2008 - went years before they found out I had it. After doing treatments with steroids to control my flares my gastro-doctor decided to start me on Remicade. I have had Remicade treatments since July of 2009. I found out yesterday while refilling a sleep aide that I was supposed to be having labs done every 6 months to check how things are going - i.e. am I anemic, my liver functions, my kidneys, immune to the drugs... I had noooo idea!! The nurse practitioner couldn't believe that I had never had this done and immediately called the gastro doc to confirm that they haven't done any tests. I'm completely floored that something so important was never communicated to me and that I never knew this was important. I'm so embarrassed because I try to take excellent care of myself and do exactly as I'm told by doctors. I'm also miffed that no one ever said anything before.

I have had belly pain for awhile but chalked it up to "normal" indigestion. I'm wondering how long ago these drugs that cost $10,000 a treatment quit working and what long term side effects could I possibly be facing. I guess other than to vent, there is not really much point in my post other than to wonder if anyone else has had this issue? I'm so concerned that I have been taking these treatments and not needing them... also, I don't know what all could be wrong with me. They are supposed to call in the next couple of days with my lab results but who knows if that will even happen.

Has anyone else run into this?? Is there anyone who has been on Remicade that long with success? I haven't had an all out flare since I started them and my energy level seems good. It was horrible before the treatments and I was in a constant flare for at least 2 years straight. I would love to hear from you all if you have been in my situation. I'm hoping that everything is fine and that I'm not immune to the drugs. I'm really freaking out....
Posted 6/4/2015 1:03 AM (GMT 0)
Labs aren't required with remicade, from my understanding. 6mp, Imuran, and aza require it, if you're concurrently on them.
Posted 6/4/2015 1:17 AM (GMT 0)
chances are you are not immune to them if you have not had a flare in 6 years
also, since you are feeling pretty well in general hopefully you are ok
but....i would get a second opinon
Posted 6/4/2015 1:59 AM (GMT 0)
6 years is a long time for anyone, even healthy people. If i didn't go to the GI for my UC i doubt i would get labs very often though I admit. I think it's irresponsible on the part of your GI to keep renewing your UC meds without doing some basic blood work at least yearly. I get a blood draw each time I get an infusion. So i get it every 8 weeks at this point. I've gone through phases where I went much longer without a blood draw but i think even if you're only on Lialda you're supposed to get bloods drawn yearly.
Posted 6/4/2015 3:03 AM (GMT 0)
Sorry but I don't understand why you are freaking out or why you would think you don't need the drugs. You had UC, you got better taking Remicade and that hasn't changed. Black and white issue. Case closed. Enjoy your remission.
Posted 6/4/2015 6:33 AM (GMT 0)
You've been living the dream for six years? I'm jealous
Posted 6/4/2015 4:38 PM (GMT 0)
My concern is that I have had A LOT of "problems" with cramping, diarrhea, fatigue for awhile now - probably a couple of years that I can remember but it hasn't been like it was when I first started Remicade. Before I started I was going 30 or more times a day so I figured the way I have been feeling lately was "normal". I'm worried that I developed anti-bodies to this drug a long time ago and because my doctor didn't make me aware of follow-up with my care, that I have really been taking something I haven't needed or something that hasn't really controlled my symptoms the way it should have.

I know there are chances for rare Lymphoma cases but I'm really bothered that I found out so late when all of these issues may have been avoided with proper follow-up. Biologic drugs to me are pretty serious and I worry about longer term effects of taking something like I have without being properly followed up on. I have not felt great for 6 years... I've felt better than before I started but I was at the point of hospitalization before I started Remicade.
Posted 6/4/2015 4:53 PM (GMT 0)
How many BM's do you have per day now? Do you have any urgency? It doesn't sound like the Remicade is doing right for you now. What dosage and intervals are you on? Many have to increase both dosage and intervals at some point. It's possible that it has either become less effective or you are building up antibodies to it. It could be either one. They do have tests that can check the antibodies but I believe many insurances don't cover it and it is quite expensive so many GI's don't do it and use educated guesses instead.
Posted 6/5/2015 11:46 AM (GMT 0)
I have been having very irregular bowel movements which is way different than when I started the Remicade. It could be 2 times a day to about 10 times. I also do have urgency at times but not all the time.

I was in such bad shape when I started the Remicade, I thought that was what all flares were like. I assume there can be lesser symptoms with flares? Would you classify some urgency and 10 times a day as a flare? The belly pain concerns me too. I had NO belly pain for a long time when I started Remicade. I felt almost "cured" if you will.

I called the nurse 2 times yesterday because of course, no one called me back. When I talked to her she said (rudely, if I might add), your labs look ok but I am going to have the lab tech call you.... I asked her again "is everything ok?" and she said they look ok but the lab tech is going to call you. My sister is a nurse and she was as baffled as to why a lab tech would call me when the nurse is supposed to read the results. I never heard back from the lab tech.

Either way, I'm calling my gastro-doc today and asking them to get the results and call me and explain every detail on that report. While I'm glad to hear labs looked ok, I'm worried about titers. Hopefully I'll have answers today.
Posted 6/5/2015 12:11 PM (GMT 0)
You are flaring
Posted 6/5/2015 12:36 PM (GMT 0)
You should tell the doc what happened with the labs and nurse
If he is not apologetic I would look for a second opinion
Only because even if a doctor is excellent if you cannot get through to them and the staff is incompetent and makes it harder for you to get the care you need it may be best to start finding a doctor that you trust both him/her and his/her staff
Feel better
Posted 6/5/2015 6:53 PM (GMT 0)
Ok, so I called the GI nurse and had her get the labs from my doctor's office. She called me back and said that everything looked normal. I said how about the development of antibodies.... Is that a problem? She said, let me go back and double check - Again, this makes me worry because that should have been one of the main things they looked at already and she should have been confident in her answer.

My doctor is also a personal friend who happened to be out when I saw the nurse practitioner and I am going to tell her about my experience with her office and her nurse. While I'm glad that the nurse practitioner caught my lack of labs, I'm questioning why my GI doc and regular friend doc didn't. That seems so wrong to me.

On the bright side, they said my drugs are still working, I haven't developed anything that shows any serious complications in my blood work, and I have scheduled an appointment with my GI doc to talk about follow-up and my symptoms lately. Hopefully she can decide whether to increase my dose, frequency, or change meds. It sounds like I am having flares from what you all say and I want to keep it under control. Thank you for your feedback and support. That's one thing I can always count on with this support group. Many thanks for your support and feedback!!! Well wishes!
Posted 6/5/2015 7:04 PM (GMT 0)
OH! And one other thing I forgot to mention was the major case of covering themselves the nurse pulled. She said that they were running labs for "long while" when I was starting Remicade and was getting the treatments early on which is completely untrue. I would know and remember if that was going on. HOWEVER, now she wants me to come to their office every 3 months for now and then every 6 months for lab work.

I find it really interesting that they don't just own up to forgetting something instead of basically calling me a liar when I said I didn't have any done. I would LOVE to see proof of those labs that they were taking....!
✚ New Topic ✚ Reply