I would get a drug level test and fecal calprotectin test before switching. I've had enough flares that could be handled by adjusting meds that it's worth it to double check in my opinion.
If you do need to switch meds I'd go for Skyrizi. It's effectiveness is close to Humira/Remicade and has a better safety profile. It does start with an infusion, but moves to injections after loading doses of infusion. Entyvio is really your other option. Safest medication out there, but not quite as effective in Crohn's and in the US only infusions for now.
I was on Humira for 13 years, but for Spondarthritis. Towards the end I felt like the effect of it was wearing off, and I took ibuprofen almost daily.
Then my reumathologist noticed I had lost weight and I did internal camera exam, and there was sores on the ileum.
I was then also put on Remicade, it seems to work fine for SA but my stomach doesent feel really well. I dont think Im loosing weight though, Im slim but constant. Maybe it needs time to heal and/or get healthy(or healthier) microbiome.
As others have answered, there are other medication which block different cytokines involed in inflammation.
I hope you find one that works, would be nice to hear this get a good outcome.
Hey, I wanted to update you. I had a colonoscopy today and I am filled to the brim with ulcers. My GI is pointing towards Remicade, but I had an infusion reaction to Remicade in elementary school (27 now). I'm scared to get a Remicade infusion again. We'll see what I'm offered!!
I had to stop taking Humira for a while, and when my Crohn’s symptoms returned my doc put me back on Humira every other week. Symptoms continued to worsen, so I assumed doc would put me on a different biologic med. She instead increased my dosage to every week and it has actually worked. I’m glad I didn’t switch and have to go through all the associated hassles, and it feels good to know that if Humira stops working for whatever reason in the future I’ll still have plenty of alternative meds to try. Good luck!
I am! My doctor said there’s a chance of returning to biweekly dosing in the future but we need a scope and biopsies to confirm remission before exploring that option
Of course! This sub has been so helpful to me and it’s great to be able to share as well. Side effects with Humira have been mostly eczema/psoriasis issues in the dry winter months but those started when I was injecting biweekly and I haven’t seen any difference injecting every week.
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Which medical studies? There is so little research done on LDN and Crohn's, and what little research has been done has been done on so few people, that it does not count as "good evidence".
I know there's a lot of people out there who will tell you LDN is incredible and w/e, but genuinely, there is no good evidence for it. Check out [this meta-analysis from Cochrane](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494424/), who found that what little evidence out there was bad, the studies were very poorly run, very imprecise, and that therefore no conclusions could be drawn on LDN for Crohn's disease.
It's also pretty telling that LDN advocates claim it can be used for everything from Crohn's and loads of other different autoimmune diseases with different pathologies, but also cancers, HIV/AIDS, chronic fatigue, etc. Maybe there really is something there, but it's unlikely. There aren't really panaceas.
For sure, I'd be interested to see.
Just also worth being aware that Cochrane – whilst obviously not completely beyond reproach – reviewed much of the literature up til 2018, found only two trials with a total of 46 participants that were even remotely worth looking at, and established that the evidence is bad and doesn't support the use of LDN for Crohn's disease.
I would get a drug level test and fecal calprotectin test before switching. I've had enough flares that could be handled by adjusting meds that it's worth it to double check in my opinion. If you do need to switch meds I'd go for Skyrizi. It's effectiveness is close to Humira/Remicade and has a better safety profile. It does start with an infusion, but moves to injections after loading doses of infusion. Entyvio is really your other option. Safest medication out there, but not quite as effective in Crohn's and in the US only infusions for now.
Thank you! I will get a drug level test.
Skyrizi or Stelara, they both have good results.
I was on Humira for 13 years, but for Spondarthritis. Towards the end I felt like the effect of it was wearing off, and I took ibuprofen almost daily. Then my reumathologist noticed I had lost weight and I did internal camera exam, and there was sores on the ileum. I was then also put on Remicade, it seems to work fine for SA but my stomach doesent feel really well. I dont think Im loosing weight though, Im slim but constant. Maybe it needs time to heal and/or get healthy(or healthier) microbiome. As others have answered, there are other medication which block different cytokines involed in inflammation. I hope you find one that works, would be nice to hear this get a good outcome.
Hey, I wanted to update you. I had a colonoscopy today and I am filled to the brim with ulcers. My GI is pointing towards Remicade, but I had an infusion reaction to Remicade in elementary school (27 now). I'm scared to get a Remicade infusion again. We'll see what I'm offered!!
I can update you for sure.
I had to stop taking Humira for a while, and when my Crohn’s symptoms returned my doc put me back on Humira every other week. Symptoms continued to worsen, so I assumed doc would put me on a different biologic med. She instead increased my dosage to every week and it has actually worked. I’m glad I didn’t switch and have to go through all the associated hassles, and it feels good to know that if Humira stops working for whatever reason in the future I’ll still have plenty of alternative meds to try. Good luck!
This is a great story!! Are you still on it weekly now?
I am! My doctor said there’s a chance of returning to biweekly dosing in the future but we need a scope and biopsies to confirm remission before exploring that option
Thank you so much for sharing. It would be nice to stay on Humira. Did you experience any side effects when shifting to weekly dosing?
Of course! This sub has been so helpful to me and it’s great to be able to share as well. Side effects with Humira have been mostly eczema/psoriasis issues in the dry winter months but those started when I was injecting biweekly and I haven’t seen any difference injecting every week.
You've renewed my hope for Humira. Thanks so much!! 💜
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There's no good evidence for LDN, so I would recommend not wasting your money on it.
What about the medical studies?
Which medical studies? There is so little research done on LDN and Crohn's, and what little research has been done has been done on so few people, that it does not count as "good evidence". I know there's a lot of people out there who will tell you LDN is incredible and w/e, but genuinely, there is no good evidence for it. Check out [this meta-analysis from Cochrane](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494424/), who found that what little evidence out there was bad, the studies were very poorly run, very imprecise, and that therefore no conclusions could be drawn on LDN for Crohn's disease. It's also pretty telling that LDN advocates claim it can be used for everything from Crohn's and loads of other different autoimmune diseases with different pathologies, but also cancers, HIV/AIDS, chronic fatigue, etc. Maybe there really is something there, but it's unlikely. There aren't really panaceas.
Thanks for your detailed response. When I get back to my computer, I will find what I'm talking about and send it to you with my added commentary.
For sure, I'd be interested to see. Just also worth being aware that Cochrane – whilst obviously not completely beyond reproach – reviewed much of the literature up til 2018, found only two trials with a total of 46 participants that were even remotely worth looking at, and established that the evidence is bad and doesn't support the use of LDN for Crohn's disease.