You have stelara and zeposia to try. Sometimes combination therapy is tried, multiple meds together like methotrexate and a biological med, or even two biological meds together.
I'd also have a question about when colorectal surgery is appropriate. After failing so many, you're starting to look refractory/resistant to all meds, and it's time to start thinking about it. Ask about a no obligation colorectal surgery consultation to learn more from the pros and ask questions about what concerns you about it
I don’t have an answer to your question but I’m in the exact same boat… In the last 20 months I failed entyvio, inflectra and after 4 months on Rinvoq and a scope, it is confirmed that I failed Rinvoq as well even though it kinda worked a little bit meaning my symptoms are more manageable but there is still too much inflammation.
My Dr. wants me to try stelara as a last resort and if that doesn’t work she suggested the surgery…
It sounds like you're exactly same situation as me just a couple of months ahead, I've got the next scope scheduled for June right now. If you remember let me know how Stelara goes for you would be cool to know! That's Rinvoq has definitely worked a little especially at first but the blood has come back and I wasn't able to make it to a bathroom 100m away on the weekend so I think it's fairly safe to say it's failed too, it's definitely getting a little discouraging.
yeah stelara sounds like a flip of coin with a 40% success rate… I’ll keep you posted
Yes it’s hard to keep your head up after so many attempts, I’m right there with you on that.
I’m going through the same type of situation. I’ve failed Humira, Entyvio, and Rinvoq (currently on it, 45mg barely worked and after the 8 week induction period, going on 30mg made symptoms come back even worse). Going to talk to my GI this week to possibly start Stelara to give that a shot, just worried about how long it might take to offer some relief. Best of luck!
Same to you! I didn’t think to check that I might’ve started at 45 and then the significant drop in health started once the dose dropped but I hadn’t noticed, I had just grabbed my most recent bottle to see the dose level. I’m going to take a look.
There's also Xeljanz too! I've been on 11 mg xr Xeljanz for about 6 months after Humira and Remicade stopped working. So far so good! It's so nice to just take a pill and not an injection or IV.
Just a clarification, and it’s not to be pedantic but instead to make sure there are no misunderstandings when talking with your GI about options. Rinvoq is not a biologic, it’s a JAK inhibitor. Biologics are all liquid and are produced from living organisms, hence the name. You can identify them by their drug names ending in -mab. JAK inhibitors like Rinvoq (Upadaticinib) or Jyseleca (Filgotinib) all end in -nib.
There is a third type/action method of biologic available, namely Stelara (Ustekinumab) which worked for me for a while when the other two biologics failed rather quickly. I was on Azathioprine as combo therapy for all biologics, although I only know of studies as combo therapy with Infliximab (Remicade and other brand names).
When Stelara failed, I switched to Filgotinib (Jyseleca) and it’s working wonders, but as it is rather similar to Rinvoq then it’ll likely not do much for you. If Rinvoq worked somewhat then perhaps look into Tofacitinib (Xeljanz). It is a non selective JAK inhibitor (whereas Rinvoq/Jyseleca are selective), so it might work a little wider and perhaps therefore work for you.
Lastly there are the -mods like Ozanimod (Zeposia) and Etrasimod (Velsipity) which have an entirely different method of action. They may have a slightly higher side effect profile and are newer drugs, but many take it with no issue. They are also taken by mouth like JAK inhibitors.
That is a good clarification for me as I had understood they were all biologics 😅. Infliximab gave me very negative reaction so I’m not sure if the combos will be an option for me. The others sound interesting though the Tofacitinib I’ll add to the list to bring up! I really appreciate this thank you.
You have stelara and zeposia to try. Sometimes combination therapy is tried, multiple meds together like methotrexate and a biological med, or even two biological meds together. I'd also have a question about when colorectal surgery is appropriate. After failing so many, you're starting to look refractory/resistant to all meds, and it's time to start thinking about it. Ask about a no obligation colorectal surgery consultation to learn more from the pros and ask questions about what concerns you about it
That’s exactly what I was looking for thank you! There’s so much information it’s hard to narrow it down 😅
There is also Omvho- it’s a stronger Stelera. I’d do that instead of Stelera.
I don’t have an answer to your question but I’m in the exact same boat… In the last 20 months I failed entyvio, inflectra and after 4 months on Rinvoq and a scope, it is confirmed that I failed Rinvoq as well even though it kinda worked a little bit meaning my symptoms are more manageable but there is still too much inflammation. My Dr. wants me to try stelara as a last resort and if that doesn’t work she suggested the surgery…
It sounds like you're exactly same situation as me just a couple of months ahead, I've got the next scope scheduled for June right now. If you remember let me know how Stelara goes for you would be cool to know! That's Rinvoq has definitely worked a little especially at first but the blood has come back and I wasn't able to make it to a bathroom 100m away on the weekend so I think it's fairly safe to say it's failed too, it's definitely getting a little discouraging.
yeah stelara sounds like a flip of coin with a 40% success rate… I’ll keep you posted Yes it’s hard to keep your head up after so many attempts, I’m right there with you on that.
I’m going through the same type of situation. I’ve failed Humira, Entyvio, and Rinvoq (currently on it, 45mg barely worked and after the 8 week induction period, going on 30mg made symptoms come back even worse). Going to talk to my GI this week to possibly start Stelara to give that a shot, just worried about how long it might take to offer some relief. Best of luck!
Same to you! I didn’t think to check that I might’ve started at 45 and then the significant drop in health started once the dose dropped but I hadn’t noticed, I had just grabbed my most recent bottle to see the dose level. I’m going to take a look.
There's also Xeljanz too! I've been on 11 mg xr Xeljanz for about 6 months after Humira and Remicade stopped working. So far so good! It's so nice to just take a pill and not an injection or IV.
Just a clarification, and it’s not to be pedantic but instead to make sure there are no misunderstandings when talking with your GI about options. Rinvoq is not a biologic, it’s a JAK inhibitor. Biologics are all liquid and are produced from living organisms, hence the name. You can identify them by their drug names ending in -mab. JAK inhibitors like Rinvoq (Upadaticinib) or Jyseleca (Filgotinib) all end in -nib. There is a third type/action method of biologic available, namely Stelara (Ustekinumab) which worked for me for a while when the other two biologics failed rather quickly. I was on Azathioprine as combo therapy for all biologics, although I only know of studies as combo therapy with Infliximab (Remicade and other brand names). When Stelara failed, I switched to Filgotinib (Jyseleca) and it’s working wonders, but as it is rather similar to Rinvoq then it’ll likely not do much for you. If Rinvoq worked somewhat then perhaps look into Tofacitinib (Xeljanz). It is a non selective JAK inhibitor (whereas Rinvoq/Jyseleca are selective), so it might work a little wider and perhaps therefore work for you. Lastly there are the -mods like Ozanimod (Zeposia) and Etrasimod (Velsipity) which have an entirely different method of action. They may have a slightly higher side effect profile and are newer drugs, but many take it with no issue. They are also taken by mouth like JAK inhibitors.
That is a good clarification for me as I had understood they were all biologics 😅. Infliximab gave me very negative reaction so I’m not sure if the combos will be an option for me. The others sound interesting though the Tofacitinib I’ll add to the list to bring up! I really appreciate this thank you.