Judesays "hi"

[judesays]

I'm new to the forum...I've had Crohn's since 1979 & consider myself lucky compared to others with this disease. Since my initial diagnosis/surgery, I've only had 2 more Crohn's related surgeries/resections since then. However, lots of ups, downs & ER trips along the way. Right now I'm smack-dab in the middle of a flare up since January with every other "symptom" that could accompany that that you might imagine...I have been on Remicade since April & also prednisone for 9 months but can't seem to get below 15mgs a day without recurrence of symptoms. I'm not sure if Remicade is working yet (maybe not...can't get off the prednisone!) & was willing to give it more time BUT after the last 2 infusions I've been having debilitating headaches 24/7 which make simple daily life extremely difficult to say the least especially on top of my other daily, ongoing symptoms. ***My most important reason for joining was maybe hear from others who are either on Remicade or a similar biologic, have severe headache issues & what, if any, help or treatment for them has been offered by your PCP or GI doctor? So far, I'm getting NOTHING but "you can try extra-strength Tylenol" & "well, we should consider switching to a different biologic." I've invested months with Remicade & wanted to give it a proper chance to work but do not think I can live with the headaches anymore, especially if I cannot get anything to treat them with...Thanks in advance to anyone who offers their thoughts...

 

[ronroush7]

Welcome. I am sorry for all you are going through. There is also another section on here called Treatment with current treatments including biologics. You might try doing some research in there . There is lots of support in this forum. I hope you feel better soon