HealingWell
Search Close Search
☰

Remicade levels in bloodwork-lots of gory stuff too... beware!! & rant....

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/23/2017 4:00 AM (GMT 0)
Ok guys I need your wisdom.(sorry if this is too much info I just don't know if any or all of this is relevant)

I've locked myself out of my medical charts but here's whats going on. My numbers may be off...but not by much.

Had ostomy/stricture surgery in Sept. Had Remicade in October, (tested serum level and antibodies 1 and 8.9 four weeks out from infusion) then 8 weeks later (again tested for serum and antibodies at 3.6 and 0 at 4 wks after infusion)and then scheduled for this Tuesday. Thought we were using 5 mg since February 2016 (we actually lowered it in Feb ftom 10) Caught cold, euvitis started acting up, started having 3 to 5 mucus plugs come out of the rectum, (foul smelling but no blood or pain) and my cbc came back with something high for inflammation....so called my GI who at first was going to raise the Remicade level to 7.5...but upon review his nurse had sent orders to infusion center to raise me to 10 mg when we started back up in October. So I am at the max amount...and now he wants to shorten my time to 6 weeks until my Remicade levels rise. Apparently the methotrexate--which is making me meaner and sicker than a junk yard dog helped get rid of my antibodies...exactly like it did before. I think the poor nurse is toast...she didn't even notate my chart. His face was red with bulging eyes and her face was panic stricken....

Has anyone else had this happen? Were you able to get it back down to 5 mg? Were you able to get it back to 8 weeks?

Sorry if this is confusing. I am brain dead and sick from mx, and trying to get my doctor to leave it at 8 weeks since there was some improvement. He is adament and stated my serum levels need to be at 5 especially with my inflammation markers being alittle high.. Anyone else experienced this?

Clo
Posted 1/23/2017 5:55 AM (GMT 0)
Im slightly confused... did the nurse order the wrong amount of remicade?! Are the antibodies completely gone now?
Yikes! I'm sorry your going through all of this!
Posted 1/23/2017 11:24 AM (GMT 0)
Confused as well. Not sure that antibodies can go up and down. Only suggestion I would have is, if Methotrexate is not agreeing with you, you could switch that to 6mp or Imuran, as a combination therapy.
Posted 1/23/2017 3:21 PM (GMT 0)
Sorry guys...methotrexate makes it hard for me to think for 24 hours after taking it.

I started taking Remicade in June 2015 at 10 mg. We lowered the amount to 5 and extended the frequency to 8 weeks in February 2016. Everything went well until July 2016 when I developed a soft tissue stricture with no inflammation markers. They believe the stricture was caused from how bad that area was and the quick healing. I missed my September infusion because of surgery. I started Remicade back up 6 weeks late at the end of October. It was supposed to be at 5mg and every 8 weeks like before surgery.

The nurse ordered the wrong amount. She was supposed to be ordering 5 but she ordered 10. So now I am at the max amount and can not go up in the amount of Remicade being given, I can only shorten the time between infusions. However the amount of serum in my blood has increased from 1 to 3.6. So based on that I want to stay at every 8 weeks but my GI is adament about going to every 6 weeks. He said we will retest levels in a month or two and go from there.

My GI doctor said that he seldom sees someone react to Remicade and methotrexate in the manner I have. He said he almost never has to lower the Remicade amount ( which he did with me after 6 months from 10mg to 5 in February 2016)and we went to 8 weeks. He also said he seldom sees methotrexate bring antibodies back down to 0 after they have developed antibodies. So we know that we have to keep me on Remicade as long as possible and that I will just have to deal with the side effects of methotrexate.

The doctor does not want to try new meds on me as I have had 5 or 6 allergic reactions (throat swelling not being able to breathe) when he tried meds on me. Thank goodness I was in the hospital each time. (And they were all medications I had previously used successfully with no issues)

So I am concerned and wondering if anyone else has experienced any of these things. If they have had their Remicade amount lowered after going up. If they have had their timeframes between infusions lengthened after they went from 8 weeks to 6. Or is this the beginning of Remicade not working for me?

My doctor said it just depends and he is not making any predictions. What usually happens with people doesn't necessarily apply ie;. The rest of my colon healed when he did not think it would because it was so bad, The mx killed the antibodies to 0 and he had to lower the Remicade amount. The colonoscopy was successful and they think that after we repair the fistulas we can hook me back up. He just said those were all things he did not think he would see with me because the Crohns was so bad.

So....I am just trying to figure this out. Adjust my expectations accordingly. I really do not want to shorten the timeframe between infusions. The serum level has risen by 2 in just 1 additional infusion. If that pattern holds I would be at 5 with my infusion on Tuesday. The answer test says the norm is 1 but my doctor said I have to be at least at 5. So I am confused and this all happened on Friday and I am trying to figure it out by Tuesday but the methotrexate has rendered my brain useless til later tonight....

So I thought I would get your input and try to go from there.

Thanks for your feedback. Sorry for the confusion and rambling..

Clo
Posted 1/23/2017 4:49 PM (GMT 0)
I'm not sure why you're so concerned about getting back to 8 weeks if he moves you to ever six weeks. I started out at 5mg/kg every 8 weeks. It worked for two years, then stopped working well and I eventually moved to 10 mg/kg every 6 weeks and have been doing that for 3 years. I've known people at my clinic who get 10 mg/kg every 4 weeks.

Also, are they making sure to weigh you and give you the dosage based on your weight?
Posted 1/24/2017 6:18 AM (GMT 0)
Scifigal2k,

Thank you for your response. I am probably worried over nothing. I was concerned that the raised amount and frequency indicated the Remicade was losing its effectiveness. One of the patients at the infusion center gleefully told me about all the people that she's encountered there that are now unable to use Remicade for their Crohns. And the horror stories about those side affects....

Yes I read the pamphlet. I thought those side affects happened rarely. That lady counted off 12 former patients that are now near death because of Remicade. She scared the living sheets outta me! And those are the ones she knows of.... But now that you have responded I can't help but wonder if she wasn't pulling my leg. (And she looked like such a sweet little grandmotherly type!)

Yes they are weighing me. The mix everything up in the other room so I don't get to see much.

You helped ease my mind tremendously. Thank you! Gosh I hope I don't run into her today at my infusion. She was better than Stephen King!! Lol.

Thanks again,

Clo

I
Posted 1/24/2017 7:23 AM (GMT 0)
My GI had said in relation to me that it all depends on the person and you have to adjust it sometimes higher some lower depending on how fast your body uses it. My levels of it were high 11 to 14 depending on the month and i was told that 5-7 is normal. i was lowered to 3.5mg because he didn't want to overdose me and risk complications and side effects but when he did I started having issues so it was brought back up to 5mg. It may fluctuate with you and I think only time will tell. The antibodies is odd because from what I was told is that once you have them they usually don't go away, also docs usually stop the med. though at one point I had some antibodies show up and then the next there was no sign of them so its really confusing.
What did the other patient tell you?
Several years ago at a different hospital a male nurse told me not to take any drugs they were suggesting, that it would poison me just like his ex wife who was on life-support. his child had it too and wouldn't talk to him because he was trying to convince her to go with "natural" treatments. The head of the GI department walked in when he was telling me to basically not take meds or trust any docs which caused quite uninteresting scene. where did that leave me? scared! i didn't start humira and slowly went down hill over the year until another hospital trip and finally on humira when it was my only choice.
I've done my best to try not let my mind go there lately and I hope I won't regret it some day not that i really had a choice. It has helped being on here and seeing positive experiences. my doc''s thoughts on this when I expressed my concern was something to the effect of- the best case would be to cure crohns, that's not possible, this is the best we have, otherwise crohns untreated is devastating.
what ever he said it was enough to give me some peace that it was the right decision and so far he's been pretty good about monitoring the drugs and weighing risk/benefits which has relieved some of my anxiety over it.
I would say the best thing you can do is have a really honest conversation with your doc about what has you concerned and what his experiences have been with remicade.
Posted 1/24/2017 11:54 AM (GMT 0)
Lab,

Thanks for your response. She told me about the other "young girls like me" that had come in to take Remicade for Crohns and everything that went wrong. Not a positive word could be had from that woman.

I am not going to into it because I don't want to scare anyone else. Remicade gave me back my life. My doctor was not their doctor. My results will be better than theirs. I don't know why people feel the need to scare others. Remicade may be the last resort for them so give them something positive to hang onto.

I guess I am upset because this happened so close to the time of my infusion. It just makes me question everything and want to know experiences from people here...so I can gage where I am and when I really should ask questions...

You all help.me when something unusual happens or when my norm changes. I trust my doctor. I verify with you all.

I appreciate all of you so much.

Clo
Posted 1/24/2017 12:09 PM (GMT 0)
Wow, yeah, just ignore her. Honestly, she probably more is telling you horror stories she found online as opposed to what she really saw first-hand. When I was pregnant with my first, lots of people felt the need to tell me all of the things they've heard go wrong with childbirth. I'm not sure why people like doing that.

Everything @labrodite said is accurate - our bodies are all just different, and how quickly we use up Remicade is going to be no different than how quickly tylenol works for us or wears off (or pain meds, for that matter). We're all just different, and it's a bit of trial and error to figure out what works best for our particular bodies.

If you see that lady again and she starts in again, just politely but firmly tell her that you aren't interested in hearing them, and if she keeps talking about it, ask the infusion nurse if you can be moved. Or if that's difficult, just bring big headphones and put them over your ears and pretend to be listening to something! ;)
Posted 1/24/2017 1:08 PM (GMT 0)
Good god, don't sit next to that woman in future - she sounds like a sh!t stirrer and I wouldn't trust a word she says. I never had any side-effects from Remicade for the time I was on it. None of the other folks in the infusion centre reported any side-effects to me either, although after a couple of infusions the room changed and wasn't open plan anymore - so I didn't speak to any more patients after that.

I never knew what my serum levels are. Remicade never worked for me except at the very beginning, but it quickly stopped working. My GI tried increasing the frequency (although not the dose) to once every 4 weeks, but that didn't make any difference either. I sometimes wonder what would have happened if I had been given a massive dose of Remicade at the beginning - like 3-4x the usual dose. My GI told me that in some people with severe disease it had been found that the standard doses of Remicade weren't sufficient, as they produced extremely high amounts of TNF (the inflammatory protein that Remicade neutralises). Think I might have been in that position back in 2011.

At any rate, yeah, Remicade is a pretty safe drug. It does increase the risk of serious infection, but that tends to be more for elderly people with multiple health conditions rather than young and otherwise healthy people.
Posted 1/24/2017 9:14 PM (GMT 0)
Gosh everyone,

Thank you for your responses. Did I tell you that methotrexare makes me mean? Lol...

I walked in for my Remicade and who was perched on a chair like a beady eyed vulture just waiting to rattle my cage? Yep. So when I sat down she asked if I had thought over what she said and what my plans were now. I smiled sweetly and told her I had really pondered her words of advice and I thought she was full of hot air. My new plan was to avoid her and not listen to anything she had to say now or in the future. Then I got up and moved.

Aaaaggghh. I really hate it when I lose control like that. I don't think I have to worry about her speaking to me again. She latched onto the next new younger woman that walked in the door after that. Whispering really loudly how disrespectful I was to the older generation. So of course I started laughing and told the young woman not to mind my Grandma. She gets confused sometimes and really doesn't understand what she's saying.... Then my name was called and I left.

Shudder......then laughter.....

Methotrexate....it makes it so that I do things I would never normally do.....aaaaggghh..

Clo
Posted 1/24/2017 9:33 PM (GMT 0)
Do the infusion nurses know what this sweet old grandma is up to? From what she said to you, it sounds like she is maliciously trying to scare young, impressionable patients out of their wits about Remicade. I'd have a talk with one of the nurses and suss out whether they're aware or not.

Congrats for standing up to grandma anyway!
Posted 1/24/2017 10:44 PM (GMT 0)
HAHAHAHAHA!!!! YES!!!!!!!!!!!! You tell that mean old biddy! I LOVE it!!
Posted 1/25/2017 12:01 AM (GMT 0)
bahahaha!! Naw, I think it was good you were on the methotrexate because someone needed to tell her! Doesn't sound like she was acting out of care or concern for your well being so you did the right thing!
Posted 1/25/2017 3:01 AM (GMT 0)
I took everything you all said and combined them. I Thank you all and the Methotrexate for helping me handle this.

I also squealed to the nurse. They spoke to the doctor who is going to tell her she can't do that anymore.

Mean mean old woman. The nurses also spoke to the young girl that she latched onto. The nurse came into my infusion room to tell me that the young girl thought that woman really was my grandma and I was her caretaker. The more she denied it the more she kept reassuring her I would be back to take her home in just a few minutes. lol.... Then that young girl told everyone else that Grandma was confused, and her Granddaughter who was getting her infusion, would be out in awhile so just keep an eye out on granny and humor her.

The nurses were laughing at their little round station. They've been trying to catch grandma for awhile.

When I left grandma was threatening to go up the road to a place that had better nicer clients.

Oh guys.....what a hot mess.

Maybe methotrexate can be classified as a bad influence...lol
Posted 1/25/2017 3:30 AM (GMT 0)
That just makes me laugh even harder!! It's been a rough day, so I definitely needed this!!!!
Posted 1/25/2017 4:34 AM (GMT 0)
Laughing with all of you!! that is the best story!
btw out of curiosity... what was she there for?
Posted 1/25/2017 6:39 AM (GMT 0)
I don't know. Its a large infusion/clinic with one large waiting room buildt like a wheel. Different things will usually go down different hallways but if a doctor overbooked he will use other doctors rooms. So confusing. They have hiv/aids down one hallway. They don't utilize other rooms for them. They have cancer, crohns, uc and ra in another hall...eye stuff down another hall. It was either for her eyes or ra. I
Posted 1/26/2017 5:41 AM (GMT 0)
Best remicade story! Hilarious how you handled granny!
Posted 1/26/2017 12:50 PM (GMT 0)
Nice one :D
Posted 1/26/2017 2:41 PM (GMT 0)
Glad you handled that ol' gal but people like that really bug me.

Of course there are risks but for most of us the benefit far out weighs the risk.

I am no longer on Remicade but I was on it for 10 years starting back in 1999 when it was new. So 10 years on it and 18 years since my first dose and I'm still kickin'!

As for the MTX are you taking a folate supplement? It depletes folate and many of the side effects are from a folate deficiency. I was on 1,000 mg a day while I took MTX. It is amazing to many how many doctors still don't advise about that.
Posted 1/26/2017 6:49 PM (GMT 0)
cupcakespinkgal,

Thank you for putting your experience and time frame in your message. It gave me hope after a night filled with nightmares.

I may have "handled" granny, and hopefully she won't get the opportunity to scare the living daylights out of one more person. I am having horrible nightmares because her narrative was so graphic.

I am taking folic acid daily. I double the dose the day I take the methotrexate and the next day. I hope that my body adjusts to the methotrexate after I have been on it acouple more months.

My infusion went ok yesterday. I developed restless legs after the steroid and benedryl...like normal. My throat gets itchy....and then the infusion starts....so always nervous that its the Remicade and not the benedryl/steroid causing the itchy throat and wondering how I will know if things are going bad during the infusion. lol. Nothing like being paranoid.

I feel so much better now after the infusion. I hope to get some sleep today and by tomorrow I will be ok.
✚ New Topic ✚ Reply