Severe headache and sinusitis after taking my 8th remicade infusion

I stopped getting amazed by Remicade's side effects. I have to admit that it has improved my symptoms to a great extent though I still have active disease. Since I started Remicade in January, I've had immediate side effects like abdominal pain, diarrhea, dizziness and fatigue. These would last for 4 days and I got used to them. When I told my GI, he didn't deny them, mentioned that they are not mentioned in literature but other patients he has complain, too. So, he prescribed me a medicine for dizziness and I coped with the side effects for 7 infusions.

As I posted earlier, Remicade is accused of causing me bruising to be investigated next week.

The side effects this time are severer. I took the infusion on Wednesday and by night I sarted to have a severe headache and sinusitis pain. I keep taking paracetamol tablets to the extent that my stomach started to hurt me and I became nauseous. My proctitis is acting up, too. I don't know whether this is a coincidence or I should accuse Remicade. Do side effects change by the passing of time?

I'm so sorry to hear you're having so many side effects. I know the reactions can be pretty severe. If you haven't already, you may want to call your doctor since this is worse than your usual reaction. Please do be careful with the paracetamol (acetaminophen-US) as it can seriously damage your liver and kidneys in higher than recommended doses.

Is it definitely a sinus headache and not a migraine? I was getting them constantly for several months as I've posted about in the past and seemed to be connected to remicade but this last infusion actually seemed to clear them up at least temporarily because it might be coming back (yep totally confused now since my doctor was convinced it was the meds. I'm now in a similar position as you have been where remicade levels are high but you seem to need more) I hope you have a similar break from your symptoms. I'm going Monday to discuss my remicade levels. According to the receptionist my GI wants to lower my amount of remicade so this should be an interesting appointment because I'm all ready for my November infusion to get rid of these pains that are slowing creeping back. I so very much dislike feeling amazing for like a day or a week and then having the black clouds of pains and illness slowly move back in and steal it away over and over again. It sounds also like you need to take some time for yourself and give yourself a chance to recover. I've been pushing myself to do the same. It's not easy and rather upsetting but to preserve your health and produce your best work you need to give yourself permission to slow down. My professor kindly yells at me to go to sleep some evenings when she knows I'm pushing myself too far. It's very hard though. I'm so so far behind at this point (i know the feeling of guilt) On a positive note, keep going, hang in there! Can you take extra time for your PhDs given your health?

Thanks! it went well. My doctor wants to lower the dosage because my remicade trough levels have been consistently high before the last two infusions ( 15 and 11 respectively) and he does not want to over dose me (that could cause problems too). I am considered not "normal" lol because my symptoms that i still struggle with don't follow a pattern that points directly to crohns or remicade and my blood work is all great but it obviously responded to the last dose but did not consistently in the past and looked more like they were a reaction to the drug up until the last dose. so the dose will be lowered and we see if it makes any difference one way or another, It was pretty long appointment. The GI went over quite a bit of info but its really down to waiting and watching I think, which I'm okay with, though it's unpleasant to have the aches setting back in. I guess I'm basically doing the opposite of what you are doing with the remicade dosages so we will see what happens. Have you thought about going in that direction? maybe lower doses but closer together?
take your time with your studies. the stress of that only makes it worse. you will get there!

i knew it was working because in June I had a scope and it came back with only minor inflammation followed by another scope in August that came back completely clear of active Crohns. I really have know idea about the other extra intestinal symptoms except what I said. Hopefully it means that it's kicked in because all of the symptoms disappeared for about two weeks. I actually felt like a normal human for a few days dislike aomw localized pains that didn't totally fade. But now that a lot of my oppressive aches are back who knows what will happen after the next infusion. Maybe I'll get no relieve like the other times. Hoping for the best though.