I had my 3rd infusion on Wednesday afternoon and have been in bed since with fatigue and nausea. I haven't eaten but a few crackers to take my medicine and have no desire to drink water either - although I'm forcing myself to drink water. No vomiting.
I've been taking Zofran (anti-nausea) med left over from taking MTX and it hasn't helped.
I'm just now starting to get more energy and feel less nauseous. My next infusion is in 2 months.
I don't know if it gets easier. I had "loading" doses - smaller doses for the first 2 infusions, the third was a higher dose, that's why I think I got sick this time. Some people experience fatigue the next day or two and some don't at all. I did call the doctor's triage nurse line and the nurse said that he wasn't aware of anyone else experiencing my degree of nausea. However, I did check online and 21% of patients do experience nausea. At what level, I don't know. This is my 3rd med and don't want to switch again. I'm going to discuss with the doc, maybe they can give me a med to prevent the nausea when I get my next infusion.
Hi Stoney, I hope you aren't concerned about using a biologic because of my experience this week. I think my reaction is unusual and Enbrel and Humira don't cause nausea or fatigue as far as I know.
Stoney said:
That makes a lot of sense. I haven't used any of the biologics yet, although I'm sure it's the next step for me.
Calling the doctor and planning for side effects is a good practice to follow.
Not at all. I know that overall people are happy with the biologics. There are potential side effects with anything. Honestly, I’m hoping to have a biologic added in sooner rather than later.
I was wondering how you were feeling Frances and glad to hear it is better. I wonder could you have a virus? My husband and I both got hit with major fatigue, no appetite though no nausea either and chills. No cold symptoms and some diarrhea. Weird but I thought I would put it out there to see if it fits for you. I just started Remicade also. I had my 4th infusion 3/7/13. I hope you continue to feel better and better.
Hi Michael, my gut thinks it's the Remicade that made me sick, but I have nothing to support that at this point. I am concerned that I won't be able to continue with Remicade - it's my 3rd med (MTX & Humira failed) and I don't want to start a 4th med.
michael in vermont said:
I was wondering how you were feeling Frances and glad to hear it is better. I wonder could you have a virus? My husband and I both got hit with major fatigue, no appetite though no nausea either and chills. No cold symptoms and some diarrhea. Weird but I thought I would put it out there to see if it fits for you. I just started Remicade also. I had my 4th infusion 3/7/13. I hope you continue to feel better and better.
Frances, I understand not wanting to try a new med, really I do. It's exhausting and demoralizing when one doesn't work. However, if you find something that works well it can change your life. 4 meds isn't that many to try, honestly. Hang in there!! Sorry you are having such a hard time of it.
Frances said:
Hi Michael, my gut thinks it's the Remicade that made me sick, but I have nothing to support that at this point. I am concerned that I won't be able to continue with Remicade - it's my 3rd med (MTX & Humira failed) and I don't want to start a 4th med.
I am sorry Frances, I hoped it was something mild. Remicade is my 5th biologic to try. I was on Humiria for a year then Enbrel for a year then Simponi for a year then back to Enbrel for a year. After about 9 months they have all slowly stopped working for me. The theory is I build up immunity to them with my over active immune system so this time with Remicade I am staying on mtx to try and suppress my immune system. So far Remicade does not seem to have much effect but I have my fingers crossed. My Rheumy seems to think it is working and is increasing the dose. Good luck finding your "fix" Frances.
Thanks for sharing your experience with the biologics and for the good thoughts on finding a "fix." I wish you the same. maybe we'll get lucky together :-) I wish I could take MTX, but is made me so sick. I'm going to ask my doc about injecting MTX - if I could handle that or another med in conjunction with the Remicade if we decide I can continue taking it.
michael in vermont said:
I am sorry Frances, I hoped it was something mild. Remicade is my 5th biologic to try. I was on Humiria for a year then Enbrel for a year then Simponi for a year then back to Enbrel for a year. After about 9 months they have all slowly stopped working for me. The theory is I build up immunity to them with my over active immune system so this time with Remicade I am staying on mtx to try and suppress my immune system. So far Remicade does not seem to have much effect but I have my fingers crossed. My Rheumy seems to think it is working and is increasing the dose. Good luck finding your "fix" Frances.
Thanks for sharing your experience Mimi. I have an appointment on Friday. I'm still not eating much. Crackers during the day and then dinner - and tonight didn't eat much for dinner. It's ok though . Need to lose the steroid weight I've gained !
mimiB said:
I am so sorry ! I got very ill after my third Remicade infusion, but it was not from nausea. I had a fever and chills, cough and the wort migraine of my life. It's so hard to know if it is a virus or an infusion reaction, or so I have heard and read. I hope you will feel better soon and be able to sort this out with the help of your doctor.
I get what I call a "Remicade Hangover," which involves fatigue, nausea, headache ... and it has gotten less and less after each infusion. Last time it wasn't bad at all.
Hope you feel a bit better soon,really feel for you. Hope you manage to eat as well it’s not good you will be so weak.All the best hoping you pick up soon.
