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Entyvio so far. Possible back pain side effect.

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Ulcerative Colitis
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naturalcurl
Regular Member
Joined : Nov 2010
Posts : 261
Posted 5/17/2020 9:49 AM (GMT -8)
It has been 5 months and 5 infusions. Even if the response is partial I am happy. No blood! Not tempted to take yet course of Prednisone. The GI was concerned that I still have frequency, three times or more in the morning so we are going to check calprotectin and CRP and hope that inflammatory markers are down.

The infusion process takes a lot longer than the half-hour that Flowers Gal reports. By the time the staff finishes a meeting or gets the medication for the pharmacy I can be stuck in that chair for 2 hours. That's tiring, but I have had no immediate reactions other than this last time when I had aches and chills for a day.

Has anyone had cortisone injections for back issues? That has been mentioned but not offered yet.

The timing of my lower back pain makes me think there could be a greater than zero chance that it is Entyvio related. It is listed as a common side effect. Thirteen years ago I had pain that quickly resolved and degeneration of the spine on x-ray and MRI and nothing has changed. This debilitating pain has been going on for months. I told the doctor I am tempted to discontinue the infusions and see what happens. He does not want me to stop and re-start (antibodies) and he says it is important to clear inflammation. I agree, but pain killers are not a long-term solution.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1600
Posted 5/17/2020 2:06 PM (GMT -8)
Sorry you are not getting the quick infusion. Sounds like the facility is just not very organized. They Always call the day before to make sure I’ll be there. When I show up my bag is waiting for my at my table.

I haven’t had back pain. I was having lots of back pain when I was flaring though.
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QuantEntangled
Regular Member
Joined : May 2020
Posts : 26
Posted 5/17/2020 2:46 PM (GMT -8)
I’m newly diagnosed (6 weeks ago) and new to the forum (3min ago).

I was placed on Inflectra while in hospital where I was newly diagnosed 6 weeks ago. No issues with Inflectra for the first infusion but I did have reactions during the second infusion. One of the reactions was severe back pain. At one point they had to stop due to my chest closing up, sweats, high HR, and severe back pain. Within minutes of stopping the reactions went away. We restarted at a much lower rate and doubled the rate every 15 minutes. Once I hit 80ml/h the back pain returned, I asked for it to be dropped down to 60ml/h and eventually the back pain went away.

Not sure if this helps and I know I was on different meds but thought to share.
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naturalcurl
Regular Member
Joined : Nov 2010
Posts : 261
Posted 5/18/2020 9:43 AM (GMT -8)
Quant: Congratulations (that is not the right word!) on your first post. It sounds like you will be a good advocate for yourself. I am coming up on 10 years on the forum and that was early advice; self care and knowledge.
Others here might have a explanation about why your reaction happened after the second infusion. Let us know how you are doing.
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QuantEntangled
Regular Member
Joined : May 2020
Posts : 26
Posted 5/18/2020 1:17 PM (GMT -8)
Thank you for the welcome smile.

We tested my levels and noticed that I was building antibodies, most likely the reason for the reaction. The doc also mentioned that some people’s bodies don’t like the non-human ingredients in Inflectra, this is also a possible reason. Either way the levels were too low. Based on all of this she suggested I move to Humira. Hoping to start Humira next week as I’ve been tapering prednisone and down to 15mg tomorrow. I was supposed to have my third Inflectra infusion next week so getting into Humira next week is good timing.
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naturalcurl
Regular Member
Joined : Nov 2010
Posts : 261
Posted 5/19/2020 9:43 AM (GMT -8)
QuantE,
If you introduce yourself through a new thread you may hear from others who have been down the same medication pathway.
It must have been severe for you to be in the hospital and fast-tracked to high-level treatment.
Hope you feel better.
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