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remicade and symptoms

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Ulcerative Colitis
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Posted 10/15/2014 11:28 AM (GMT 0)
Sorry for all the q's haven't been on in a while. I've been on remicade 9 months now and the side effects seem to effect me worse than normal. Ive missed periods the first two months I was on it. Then they would be late or odd. I also get severe muscle and nerve pain around day 5 that keeps be bedridden, and migraines. Im now in topamax for the migraines which has helped keep them under control but I still get them from time to time. My inflammation even with the remicade is not under control am still having constant fatigue weakness and bouts nausea, especially when I try to eat.

Does anyone else have symptoms with remicade?
Posted 10/15/2014 4:49 PM (GMT 0)
Hate to state the obvious, but the Remi hasn't put you in remission. There should be testing to ensure you are at therapeutic levels. Then a dose or frequency change, to get your inflammation under control. Can't speak to the migraines. Issues at day 5 are also unusual. The nausea is a common UC symptom. Are you on a PPI ? This can help, even the over the counter ones. Have you been scoped recently to see where your issues are?
Posted 10/15/2014 5:20 PM (GMT 0)
I was on Remicade for the about the same amount of time. Just shy of one year. It never put me in remission. I did get headaches while on Remi. I don't think I would call them migraines. Once I stopped the Remi the headaches stopped so I'm sure it was from that. I had nausea but I'm pretty sure that was from the UC flare itself. After nine months you should be having a discussion with your doctor whether or not to continue it.
Posted 10/15/2014 5:33 PM (GMT 0)
Sorry to hear about your rough time.
Remicade usually works pretty well for those of us with UC.
Unfortunately I have a few side effects as well. Usually get really bad headaches that turn into migraines. These usually start 2 weeks before my infusion and continue about a week after I've received the infusion. Receive infusions every 8 weeks. Almost seems like my body is going through Remicade withdrawal as the previous infusion is broken down.
Talked to my Dr. about this and she suggested I take OTC allergy medication. I took Fexofenadine, and it seemed to help for about 3 months and now the headaches are back.

I also experience muscle atrophy which seems to be a rare side effect along with sore joints where scar tissue is present.

Experience loss of appetite/nausea from time to time. This occurs 6 weeks after infusion.
Fatigue is also present quite often. Believe this is common to UC patients and also a side effect of Remicade. When receiving infusion the nurse always asks me to rate my fatigue.

Sorry I can't be more helpful. Hope things turn the corner for you soon.
Posted 10/15/2014 6:34 PM (GMT 0)
I was on remicade for 6 years and it was very effective at first, but over time my dosage had to be increased until eventually it lost its effectiveness. I was switched to humira and then cimzia which put me in complete remission once i altered my diet and lifestyle. Up until a month or so ago i enjoyed a symptom free 1.5 yrs on just one lialda a day.
All of the biologics gave me headaches though...
Posted 10/16/2014 3:12 AM (GMT 0)
Have your symptoms improved while on Remi? Are the side effects only what is causing you issues at the moment and if so, do you premicate before each infusion?

I've been on Remicade for nearly 3 years now. At first I had some pretty strange side effects. Massive joint pain, extreme muscle cramps, nausea, headaches, major fatigue, some odd skin issues etc....however, I had no premedication. But I started having extreme swelling in my hands and excruciating pain after my 3 rd infusion so my doc started me on Bendryl and Solumedrol before each infusion 30 minutes before the infusion. Since then I haven't had much of an issue with side effects.

If you premedicate, what do you use?
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