Humira Bloodwork Results

I'm really frustrated with my GI right now. So, I've been on Humira for 10 weeks now and I'm still flaring. I only felt better until a week after I got off prednisone. Then I got better again when I went on Uceris for 2 weeks. My symptoms came back again a few days ago, about a week after getting off of Uceris. So, I wrote my GI the other day and his response was i need to get Humira trough level bloodwork done...apparently, he forgot I just did that 2 weeks ago and he even commented on my results being therapeutic on the online portal. He told me I need to do that and get a calprotectin test before we can decide if the Humira is working. Well, it's definitely not working. How much more of my life do I have to waste?!

I have to drive 40 minutes to the hospital to get the stool test container, then I'll have to drive back another day to drop it off, which is really annoying and I feel unnecessary right now because I know I'm in the same flare I've been in since the end of October and I just want to hurry up and start the approval process for the next med so I can start it and get off Uceris. I feel like time is of the essence for me since I now can't take pred and I really don't feel comfortable taking Uceris for long either due to the whole osteoporosis thing. I'm fighting not to get depressed over all of this.

Anyway, I wrote him back last night reminding him I already had the Humira bloodwork done and then I wrote him one more time today because i wanted to know if he had heard of a link between migraines and Humira and I also expressed my concern about a Xeljanz side effect I saw listed on their website of "tears to the intestine." I don't know if he didn't see my first message about the bloodwork because he again said we need to get concrete evidence from the calpro and Humira trough before we call Humira a failure and he told me not to stop it. Well, I'm stopping it. It's clearly not working. I'm bleeding again and I spent almost all day tied to the toilet. I set up my "bathroom desk" and was working from the toilet all morning. Had to take Tramadol again for pain, too. And I'm extremely exhausted. Sorry, I'm just really frustrated.

Thanks. I actually like this doctor better than the two I saw in Indianapolis (closest big city to me) a few years back. He's been writing me back personally usually within a day so that's really nice not having to go through his nurses, and he gives me Tramadol when I need it, which is currently helping me function. He's really nice and a good doctor overall...it just frustrated me tonight because I really want to feel better as soon as possible or get surgery and move on with my life. I'll just get the calpro done and go from there. Thanks for listening to my rant and responding.

I know you guys all told me not to go off the Uceris so soon but I really wanted to know what was working. I started it again yesterday. I hope it works again.

It's not doing anything. Both times I stopped steroids (first pred and then Uceris), I went right back into what feels like a severe flare. And it may have been the cause of my super scary migraine last weekend (see other thread). I'm not expecting Humira to be a magic bullet...I waited 10 weeks. And I've been basically waiting since July, which is over half a year (that's when I started biologics). And I've been flaring since Mary of 2018, with only a couple months here and there of remission. That's a LONG time, I've been VERY patient. And my GI will tell me to stop Humira as soon as he sees the calprotectin to prove I have inflammation (so unnecessary when he can just listen to my symptoms) and as soon as he remembers I already did my Humira bloodwork.

Yeah, I have a surgery consult set up for March.

Thanks. I'm on Delzicol too, but I don't think it does anything anymore. I haven't been able to retain the enemas the last few nights. I'm starting to feel a lot better though on the Uceris. I'm truly shocked it's working for me because I never thought it did in the past.

I left a desperate-sounding message with my doctor's nurses yesterday and this morning I had an email from him where he remembers now that I did get the Humira testing done. Lol. He said the Humira should be working since I responded to Remicade. Yeah, well, it's not. Lol. And I was only good for 9 weeks on Remi and that was right after a pred taper so who knows. Couldn't it have just been my body being in remission for a short while after a pred taper like it used to do all the time?

Now I'm leaning towards Entyvio next. Xeljanz just scares the crap out of me with the tears in the intestines side effect. And I read reviews online and the first one was from a man whose wife died from Xeljanz. It's just so new.

I am about ready for surgery. I just wish it was more of an actual cure instead of "you're still going to poop 6-10 times a day and you might have chronic pouchitis." I would just about die if I had the surgery and still had to be on these biologic meds.

That really sucks you still aren't in remission. You seem extremely patient! I knoe what you mean though. My first few years with UC I still had minor symptoms every day. I was only on mesalamine then, never took pred until 6 years in. Ah, the good ol' days. Haha.

Btw, this is kinda gross, but I just pooped in a tupperware container and am just going to switch it over once I get to the hospital. It isn't a sterile container but it's poop so hopefully it doesn't matter...? I didn't want to drive 1.5 hours 2 days in a row to get the container and then drive it back. I'm going to ask for an extra container today. Lol.

I think this disease is teaching me patience that's for sure. I get to thinking that I am in remission and then a couple weeks before my infusion I would see some blood, BMs weren't always fully formed and sometimes had an extra BM/day. When it happened in Nov before my 12/6 infusion I thought it was because I had been taking NSAIDs for knee pain, But then it happened again this month so the doc was able to get 6 weeks approved pretty quickly and I was able to get my infusion a week earlier than I had scheduled. I really feel like this will be the trick!

I hear you about xeljanz being too new. My doc wanted me to go on that instead of remi after humira failed, but I wanted something that has the best results and longest history. I also knew there was more room to adjust dosages and frequency with remi. I am glad I made that choice because this is the best I have felt in 2 years.

I loved Entyvio. Sometime between the last loading dose and the 1st maintenance dose I knew I was in remission. I was on low dose pred (20 mg) when I started and was completely off pred by the end of the loading doses. Felt completely like I did pre-UC. I hope it works just as well for you and last years and years! Since Uceris is helping you, hopefully you can stay on it until you have given Entyvio enough time to work.

My calprotectin was only 65 (usually it's over 500 when flaring), but I got it done after 3 or 4 days on Uceris and I was already improving quite a bit from where I was. I'm still bleeding and needing to spend hours on the toilet every day though and having quite painful BMs. I'm surprised the calprotectin isn't higher. Surely he won't make me stay on Humira now, right? I would think he'd listen to my symptoms over a test. My old GIs never even did this test.

When was your last endoscopy? You've certainly been through a lot and struggling a while, so perhaps another look is warranted? It's not a completely unwarranted request, but it is something you can say no to if you feel strongly about it. Certainly it is the most accurate tool to see where you are at, today. Moreso than calprotectin or CRP. Maybe he/she is covering their own butt, or verifying to your insurance with evidence why you need a different med now. A few things could be going on, I would ask for the reason. I am the type to hear someone out 1st, before I tell them they are wrong at least

No, they would not ask you to stop uceris before the endoscopy. Uceris has a relatively weak affect, so they are not expecting major changes from it.

My last scope was 1.5 years ago, so I was getting close to time for my 2-year check-up. Also, my current GI has never scoped me (my last doctor moved at the end of 2018). So I guess it does make some sense to scope me. The Uceris seemed to make quite a big difference for me (surprisingly) the first time I took it recently, a few weeks ago. It doesn't seem to be working quite as well this time, but I also had a stressful week and had a few nights where I got very little sleep, so that may be playing a part. I just don't want to get a scope and have it look decent just because I'm on Uceris and then be told I have to continue with Humira, which I feel is doing nothing. Last night I felt pretty bad. So far today, I'm okay. I guess I am just so sick of waiting and being sick that I was really bummed last night when he told me I had to do more waiting.

NSSG: Yes, that makes sense. Did you say the extra BMs with a jpouch are not like normal BMs or UC BMs, meaning it's fast like peeing and also painless? I thought I remembered you writing that somewhere and I was just curious if I remembered that correctly or if I made that up (wishful thinking maybe....lol).

Side note: My landlord paid to have a cleaning lady come clean my house today and she mentioned her son has Celiac's, so I said I have UC, and it turns out her husband has UC, too! Thought that was kind of crazy. I hardly ever meet someone with UC in real life.

Thanks for the replies!

Yep, you pretty much summed up my feelings perfectly. Haha. Thank you. I'll ask about Stelara.

I have not tried weekly Humira. I guess I figured since my levels were therapeutic at bi-weekly that weekly wouldn't be worth trying. Do you think otherwise?

Thanks! I keep going back and forth with Entyvio or Xeljanz. Now I'm back to leaning more towards Xeljanz.

You might read through the “starting entyvio” thread for a timeline on symptom relief. I see I posted on page 8 or so that I was off steroids and feeling better by infusion 4.

I read earlier than that page that Keith was on Stelara. I don’t remember now if he still is or switched to Xeljanz

I just got a bill from the hospital for $374. I thought it must be for the head CT scan I had for that migraine but it's for this Humira bloodwork! It was $500 before insurance! I guess this is taking care of my $350 deductible, but I was just shocked it was that much money.