- Joined
- Jul 27, 2013
- Messages
- 8
Hey guys,
I've been searching around the forum for information/success stories/anything on Stelara and I've come up a bit short in terms of quantity of posts. Most likely this is because I still don't really understand how to search around correctly because I'm technologically challenged, but regardless, I wanted to start this post to see if there was anyone out there who is currently on Stelara, has been in the past, or is considering going on it who would mind sharing their story?
After an incredibly rocky year, 4 hospitalizations, and 3 insurance denials, we were finally blessed with an acceptance into the Johnson & Johnson Patient Assistance Program so I could start Stelara. I won't bore you with the details of the last year, i.e. medications I've tried, treatments/procedures I've had, etc. because this post would become a novel haha!
But here's a brief run-down: I had my first injection of the off-label Stelara (90mg) in mid-October after coming out of a 2 week hospitalization. The injection went well: I had no side effects, thankfully, and tolerated the medication very well. Since then, I've had another injection at 4 weeks and I'm waiting for my next injection which should be happening in the next three weeks. I am on 12.5mg of methotrexate, 9mg of Uceris, and 1600mg of Asacol for specifically my Crohn's. Supplement-wise I take fish oil, folic acid, birth control, a probiotic, biotin, a multivitamin, vitamin D, and Calcium pills. In regards to my diet, I am gluten-free and dairy-free, I eat low sugar, no red meat, and no high fructose corn syrup, MSG, Carageenen, or Whey. I have been seeing an applied kinesiologist and have been doing acupuncture weekly.
I've been trying really everything I can think of to get this flare under control but I still really haven't had the relief that I'm looking for. My inflammatory levels are still through the roof, my albumin is low, and so is my hemoglobin (although it certainly isn't as low as it has been in the past so for that I'm very thankful). I just got back from a 10-day check-up/stay at Mayo and my GI informed me that for most patients, you don't see an improvement in symptoms until month 3 to 6. I'm currently only 2.5 months into Stelara so I realize I still have some time before I may see improvement, but I'm just curious if there is anyone out there who has had success on Stelara? There doesn't seem to be a lot of information out there on the drug in patients with Crohn's, obviously because the drug isn't available yet. So any information would be greatly appreciated!! Just looking for a little bit of hope right now
Thank you all so much!
Kyliegh
I've been searching around the forum for information/success stories/anything on Stelara and I've come up a bit short in terms of quantity of posts. Most likely this is because I still don't really understand how to search around correctly because I'm technologically challenged, but regardless, I wanted to start this post to see if there was anyone out there who is currently on Stelara, has been in the past, or is considering going on it who would mind sharing their story?
After an incredibly rocky year, 4 hospitalizations, and 3 insurance denials, we were finally blessed with an acceptance into the Johnson & Johnson Patient Assistance Program so I could start Stelara. I won't bore you with the details of the last year, i.e. medications I've tried, treatments/procedures I've had, etc. because this post would become a novel haha!
But here's a brief run-down: I had my first injection of the off-label Stelara (90mg) in mid-October after coming out of a 2 week hospitalization. The injection went well: I had no side effects, thankfully, and tolerated the medication very well. Since then, I've had another injection at 4 weeks and I'm waiting for my next injection which should be happening in the next three weeks. I am on 12.5mg of methotrexate, 9mg of Uceris, and 1600mg of Asacol for specifically my Crohn's. Supplement-wise I take fish oil, folic acid, birth control, a probiotic, biotin, a multivitamin, vitamin D, and Calcium pills. In regards to my diet, I am gluten-free and dairy-free, I eat low sugar, no red meat, and no high fructose corn syrup, MSG, Carageenen, or Whey. I have been seeing an applied kinesiologist and have been doing acupuncture weekly.
I've been trying really everything I can think of to get this flare under control but I still really haven't had the relief that I'm looking for. My inflammatory levels are still through the roof, my albumin is low, and so is my hemoglobin (although it certainly isn't as low as it has been in the past so for that I'm very thankful). I just got back from a 10-day check-up/stay at Mayo and my GI informed me that for most patients, you don't see an improvement in symptoms until month 3 to 6. I'm currently only 2.5 months into Stelara so I realize I still have some time before I may see improvement, but I'm just curious if there is anyone out there who has had success on Stelara? There doesn't seem to be a lot of information out there on the drug in patients with Crohn's, obviously because the drug isn't available yet. So any information would be greatly appreciated!! Just looking for a little bit of hope right now
Thank you all so much!
Kyliegh
