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HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/11/2022 12:04 PM (GMT -5)
Just received a call from my doctors office. My test results show no antibodies and my drug levels are within range of where they need to be. They didn’t give me exact numbers but the results will be available on the office portal for me to view soon. They’ve told me to continue as planned with my infusion tomorrow and then we will monitor response.
My question is, if my tests look good… what’s with this flare?
poopydoop
Veteran Member
Joined : Dec 2018
Posts : 2081
Posted 1/11/2022 12:32 PM (GMT -5)
Hi that's also what i had when they did my test. They decided that was enough justification to double the dosage from 5 to 10mg/kg (i.e. i needed a stronger dosage to manage the flare). I was flaring so badly at the time they did it immediately without waiting another 2 months.
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/11/2022 1:21 PM (GMT -5)
Did that help you get back to where you felt better? For now they’re just having me get it at the 5mg tomorrow to see how I respond. They said since I had covid recently they think it could be why I’m flaring? It’s all confusing to me.
Another random questions, does not antibodies mean an infusion reaction is not likely? I’ve always been worried about
having one and a see talk on the forum of antibodies being related to reactions?
poopydoop
Veteran Member
Joined : Dec 2018
Posts : 2081
Posted 1/11/2022 1:41 PM (GMT -5)
Hi it helped a bit but in all honestly i think i would have needed a dose of about
30mg/kg to get in remission.
Not all infusion reactions are due to antibodies, it can just be an allergic reaction. They usually do the first infusions more slowly in case of an allergic reaction. Since you already had your loading doses without a problem, it's probably fine.
straydog
Forum Moderator
Joined : Feb 2003
Posts : 20004
Posted 1/11/2022 4:14 PM (GMT -5)
Hailey the way my gi explained antibodies while on Remicade, as long as my Remicade levels were good & I did not develop antibodies I was on the good path. It's when you develop antibodies things go south.
I had a reaction to it on my 3rd infusion, was given pre-meds, slowed the infusion rate down & I never had another reaction.
You responded well to the initial dosing, then caught covid & you have a set back, that's not surprising. If I remember right this is your 4th dose, see where you are at when the next dose is due. It gets tiresome not feeling well, but it takes some time & patience.
Take care.
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/11/2022 4:56 PM (GMT -5)
Straydog: patience is definitely my problem! I just want to feel better and any sign of even a slight symptom just destroys my entire day. I really want to get past feeling that way. It’s just hard
I think the reaction fear is more a fear of how I would respond to it. Because I’m the type of person that if something bad happens I won’t try it again. And I really don’t want to be scared off of the medication that can help me
DavidEA
Regular Member
Joined : Aug 2017
Posts : 126
Posted 1/11/2022 5:11 PM (GMT -5)
I'm in a similar situation. I have high levels of Inflectra and no antibodies, yet have been in a flare for two months now and have had two infusions in that time as well. I cannot go any higher as I'm at max dose and max frequency. So we've decided to switch medicines to Stelara. Throughout my Inflectra journey, they've tested my levels/antibodies and many times they were low and I had small amount of antibodies, but was never flaring. So they kept raising my dose and frequency "in order to be pro-active." It was frustrating because they kept giving me more medicine even though I felt fine. Now we've reached the end and I cannot raise it anymore AND I'm flaring. I hate to lose this medicine but what am I to do.
If you still have wiggle room to increase your dosage and frequency, that's probably the route to take. Sometimes your body needs to find the right recipe. In my case, my GI claims my body has found a different way to cause inflammation so Inflectra, no matter what the levels, will not work. Good luck!
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2928
Posted 1/11/2022 5:56 PM (GMT -5)
I've had several tests and they all showed my levels were within range and no antibodies but I still had symptoms and we adjusted dose and frequency several times -- see my sig. I am now in complete remission. Since you had response don't give up on it yet. You have lots of room to adjust dose/frequency.
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/11/2022 8:48 PM (GMT -5)
Thanks all. I guess we’ll see what happens after my infusion tomorrow. I’m just hoping it will lessen the symptoms I’m having.
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/12/2022 3:20 PM (GMT -5)
Infusion went great! I even actually relaxed the majority of the time. Maybe because I was so tired today haha now hoping it will calm these symptoms down
Post Edited (HaleyA) : 1/12/2022 7:25:02 PM (GMT-7)
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1950
Posted 1/12/2022 9:18 PM (GMT -5)
🤞🤞🤞
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/14/2022 11:01 AM (GMT -5)
Got my infusion on Wednesday, and have noticed a lot of improvement so far. Cramping is pretty much gone and only trace amounts of blood now. So much relief. I guess now I just wait and see if this will last 8 weeks
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1950
Posted 1/14/2022 12:37 PM (GMT -5)
You should keep a calendar of symptoms, if you aren’t already it will help to show your dr in case you need to adjust your infusion times or rates. Hopefully you won’t need to, but would be helpful just in case.
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2928
Posted 1/14/2022 12:38 PM (GMT -5)
If you start getting symptoms again before your next infusion check with your doc. That's a definite sign you need your infusions closer together. Glad you are seeing improvement!!
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/14/2022 12:46 PM (GMT -5)
CCinPA: if I do need them closer together, will that be something that insurance has to approve?
straydog
Forum Moderator
Joined : Feb 2003
Posts : 20004
Posted 1/14/2022 1:31 PM (GMT -5)
I'm not CC, but yes, your dr will have to get approval from your insurance company.
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/14/2022 2:02 PM (GMT -5)
How do they go about
getting that approved? Are there more tests they have to show insurance? For example, if I have symptoms start up again around 5-6 weeks from now, can my doctor just say symptoms returned as justification to get shorter times between infusions?
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2928
Posted 1/14/2022 6:37 PM (GMT -5)
Yes -- that's all my doc did when we increased the frequency. But the doc has to get the pre authorization approved through insurance for you and you can't do it on your own
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/15/2022 8:35 PM (GMT -5)
Thanks everyone. I’ll definitely keep notes these next 8 weeks on symptoms if any return. I feel so much better since the infusion and I’m so grateful for that. I didn’t have much hope that it would work
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 1/16/2022 12:26 PM (GMT -5)
Glad you're feeling better.
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1950
Posted 1/16/2022 2:06 PM (GMT -5)
That’s a great sign Haley! Congrats!
HaleyA
Regular Member
Joined : Apr 2021
Posts : 259
Posted 1/16/2022 3:21 PM (GMT -5)
Feel like my body is just in recovery mode now. After having covid and a flare up I’ve just been wanting to sleep a lot since the infusion. Hope this is the road to recovery. Fingers crossed
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