I had been experiencing mild Crohn's symptoms for 3.5 years. I didn't even know what it was until just 5 months ago. Then everything exploded with Crohn's symptoms in August. 2 weeks where I couldn't eat anything.. needed to be hospitalized.. 24/7 cramping pain.. joint pain.. severe fatigue. I was diagnosed after colonoscopy and MRI with Crohn's of the terminal ilium. My Crohn's is located only in that small part of the G.I (the terminal ilium in the small intestine). After the extremely scary flare from August.. things calmed down.. now I'm back to my original symptoms only.. very specific symptom of moderate pain and nausea at night.. basically, what I refer to as "nauseous pain".. The nauseous pain wakes me up every night after only 5 or so hours of sleep.
Fast forward to now.. the doctor suggested I try biologics.. she said if you're gonna try a biologic may as well go for a "safer" one with less systematic side effects and more targeted to the G.I like Skyrizi.
Well, insurance denied the doctor's prescription for Skyrizi twice.. and we applied for the MyAbby Assist program. It just got approved today. By the way, what if my insurance still doesn't agree to cover Skyrizi after the 3 months of free drugs is over? There's no way in hell that I could ever afford a $25,000 / month drug. My girlfriend remarked that getting approved for the free drugs is Skyrizi's attempt to hook patients and then in the near future be stuck with unbelievably massive bills. What would happen hypothetically if I received 3 doses of Skyrizi and then couldn't take any more doses, due to not being able to obtain or it cost being prohibitably expensive? By stopping Skyrizi like that what kind of risks would I be facing from withdrawal?
I'm not gonna lie.. I hate having "nauseous pain" and being woken up by it every night after only 5 hours of sleep. I am also scared that a major flare like what happened to me in August could strike again. My Crohn's is pretty much confined to only the terminal ilium (where they found 6 ulcers and inflammation during the colonoscopy in August).. so does Skyrizi really make sense for my specific Crohn's situation?
Secondly, I'm scared shitless about possible side effects or complications from any biologics, including Skyrizi. If I get my first infusion.. what kind of side effects or complications am I looked at possibly experiencing? If I do get side effects.. will I likely experience them right away? like within a day or two? or they could come anytime? I just want to try to be prepared mentally for it.
Thirdly, how would I know if the Skyrizi is working or not? Is it likely I would notice immediately after the first dose.. like within a few days after getting the first infusion? I guess "working" in my case would be less or no nauseous pain at night waking me up.
Finally, my girlfriend bought me tickets to an NBA game for next week. I'm a huge NBA fan and she made a lot of effort to get me these good tickets. Do you think I would be okay after receiving the infusion and going to the game 3 days later? Or it just depends? This was something I was looking forward to for many months. I just don't know what to expect after getting my first Skyrizi infusion.
Does anyone else have a Crohn's condition where "nauseous pain" is pretty much the main and only symptom you have? I don't have any bleeding or urgency to poo (doctor says because my Crohn's isn't in the large colon).. I don't have many other stereotypical Crohn's symptoms.. Outside of the horrific one and only flare that I experienced in August.. I mainly just have "nauseous pain" at night.
Thanks!
Fast forward to now.. the doctor suggested I try biologics.. she said if you're gonna try a biologic may as well go for a "safer" one with less systematic side effects and more targeted to the G.I like Skyrizi.
Well, insurance denied the doctor's prescription for Skyrizi twice.. and we applied for the MyAbby Assist program. It just got approved today. By the way, what if my insurance still doesn't agree to cover Skyrizi after the 3 months of free drugs is over? There's no way in hell that I could ever afford a $25,000 / month drug. My girlfriend remarked that getting approved for the free drugs is Skyrizi's attempt to hook patients and then in the near future be stuck with unbelievably massive bills. What would happen hypothetically if I received 3 doses of Skyrizi and then couldn't take any more doses, due to not being able to obtain or it cost being prohibitably expensive? By stopping Skyrizi like that what kind of risks would I be facing from withdrawal?
I'm not gonna lie.. I hate having "nauseous pain" and being woken up by it every night after only 5 hours of sleep. I am also scared that a major flare like what happened to me in August could strike again. My Crohn's is pretty much confined to only the terminal ilium (where they found 6 ulcers and inflammation during the colonoscopy in August).. so does Skyrizi really make sense for my specific Crohn's situation?
Secondly, I'm scared shitless about possible side effects or complications from any biologics, including Skyrizi. If I get my first infusion.. what kind of side effects or complications am I looked at possibly experiencing? If I do get side effects.. will I likely experience them right away? like within a day or two? or they could come anytime? I just want to try to be prepared mentally for it.
Thirdly, how would I know if the Skyrizi is working or not? Is it likely I would notice immediately after the first dose.. like within a few days after getting the first infusion? I guess "working" in my case would be less or no nauseous pain at night waking me up.
Finally, my girlfriend bought me tickets to an NBA game for next week. I'm a huge NBA fan and she made a lot of effort to get me these good tickets. Do you think I would be okay after receiving the infusion and going to the game 3 days later? Or it just depends? This was something I was looking forward to for many months. I just don't know what to expect after getting my first Skyrizi infusion.
Does anyone else have a Crohn's condition where "nauseous pain" is pretty much the main and only symptom you have? I don't have any bleeding or urgency to poo (doctor says because my Crohn's isn't in the large colon).. I don't have many other stereotypical Crohn's symptoms.. Outside of the horrific one and only flare that I experienced in August.. I mainly just have "nauseous pain" at night.
Thanks!