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UC- What is the next step???
krisdavid posted:
I posted on here about a month ago inquiring about surgery for Ulcerative Colitis. Since then my boyfriend has went through 3 Remicade infusions, with very minimal relief of symptoms. We meet with the NP tomorrow to go over everything. My boyfriend has expressed to her that he is just not ready to jump into surgery yet, however this is the only option that she is giving us right now. We have asked for a 2nd opinion, so I'm hoping bringing a fresh mind onto the discussion board will help us deal.
My boyfriend seems to have a flare up usually every spring. This is his 3rd flare. This last spring we made sure we went in to see her when he started to feel like a flare was coming on. Thinking that maybe we could catch it in time, and he wouldn't progress into a full flare. However, this time the NP wouldn't put him on prednisone to help reduce his inflammation. Now, he is still in a FULL flare about 3 months later. He has never been sick for this long. We tried the Remicade, minimal changes. From what the NP was telling us; giving us hope, she said he could be in a full remission after the first treatment. That sure didn't happen! I know that corticosteroids or prednisone have long term effects and they are not maintenance drugs, but here is my question. Can he try Remicade when he isn't in a flare?? Try prednisone to reduce the inflammation, then try Remicade to maintain it?? Surgery is a huge step and I think we should exhaust all other options before he does something that he will never be able to reverse.
He has been taking probiotics and we were trying the carb-specific diet. Now we have begun the gluten free diet and have seen some minor changes. If anyone has any insight, recommendations of any medications or anythings, please share! It is getting frustrating and he is starting to feel like the NP isn't listening to him.
My boyfriend seems to have a flare up usually every spring. This is his 3rd flare. This last spring we made sure we went in to see her when he started to feel like a flare was coming on. Thinking that maybe we could catch it in time, and he wouldn't progress into a full flare. However, this time the NP wouldn't put him on prednisone to help reduce his inflammation. Now, he is still in a FULL flare about 3 months later. He has never been sick for this long. We tried the Remicade, minimal changes. From what the NP was telling us; giving us hope, she said he could be in a full remission after the first treatment. That sure didn't happen! I know that corticosteroids or prednisone have long term effects and they are not maintenance drugs, but here is my question. Can he try Remicade when he isn't in a flare?? Try prednisone to reduce the inflammation, then try Remicade to maintain it?? Surgery is a huge step and I think we should exhaust all other options before he does something that he will never be able to reverse.
He has been taking probiotics and we were trying the carb-specific diet. Now we have begun the gluten free diet and have seen some minor changes. If anyone has any insight, recommendations of any medications or anythings, please share! It is getting frustrating and he is starting to feel like the NP isn't listening to him.
9 Replies |Watch This Discussion | Report This| Share this:UC- What is the next step???I posted on here about a month ago inquiring about surgery for Ulcerative Colitis. Since then my boyfriend has went through 3 Remicade infusions, with very minimal relief of symptoms. We meet with the NP tomorrow to go over everything. My boyfriend has expressed to her that he is just not ready to jump into surgery yet, however this is the only option that she is giving us right now. We have asked for a 2nd opinion, so I'm hoping bringing a fresh mind onto the discussion board will help us deal.<br /> <br />My boyfriend seems to have a flare up usually every spring. This is his 3rd flare. This last spring we made sure we went in to see her when he started to feel like a flare was coming on. Thinking that maybe we could catch it in time, and he wouldn't progress into a full flare. However, this time the NP wouldn't put him on prednisone to help reduce his inflammation. Now, he is still in a FULL flare about 3 months later. He has never been sick for this long. We tried the Remicade, minimal changes. From what the NP was telling us; giving us hope, she said he could be in a full remission after the first treatment. That sure didn't happen! I know that corticosteroids or prednisone have long term effects and they are not maintenance drugs, but here is my question. Can he try Remicade when he isn't in a flare?? Try prednisone to reduce the inflammation, then try Remicade to maintain it?? Surgery is a huge step and I think we should exhaust all other options before he does something that he will never be able to reverse. <br /> <br />He has been taking probiotics and we were trying the carb-specific diet. Now we have begun the gluten free diet and have seen some minor changes. If anyone has any insight, recommendations of any medications or anythings, please share! It is getting frustrating and he is starting to feel like the NP isn't listening to him.
forgetfulagain responded:
When you say NP you mean nurse practitioner?
Unless I misunderstood that, there is no way in h... that he should be discussing surgery or Remicade or anything with a nurse practitioner! He needs a gastroenterologist ASAP. And you have to get a good one.
Secondly, there is no reason to jump into surgery if he only tried steroids and Remicade. My GI gives me steroids in short doses for flare ups and keeps Remicade as an option for when/if steroids stop working. Why was he put on Remicade to begin with? Plus, he needs to be on Remicade longer than just the 3 initial doses to feel better. And he would have to receive them regularly for a longer period (I think the studies took 14 weeks as the marker for when Remicade is effective). If the NP gave him Remicade because she doesn't like steroids side effects, Remicade is, in my mind, 10 times worse because of all the very dangerous side effects, but that's just me.
In any case, surgery is something you have to discuss with a very good and experienced GI doctor. Please do that first before you decide on anything else.
Oh, and one last thing: was your boyfriend every on Asacol or similar medications? If not, why not?
let us know.
Unless I misunderstood that, there is no way in h... that he should be discussing surgery or Remicade or anything with a nurse practitioner! He needs a gastroenterologist ASAP. And you have to get a good one.
Secondly, there is no reason to jump into surgery if he only tried steroids and Remicade. My GI gives me steroids in short doses for flare ups and keeps Remicade as an option for when/if steroids stop working. Why was he put on Remicade to begin with? Plus, he needs to be on Remicade longer than just the 3 initial doses to feel better. And he would have to receive them regularly for a longer period (I think the studies took 14 weeks as the marker for when Remicade is effective). If the NP gave him Remicade because she doesn't like steroids side effects, Remicade is, in my mind, 10 times worse because of all the very dangerous side effects, but that's just me.
In any case, surgery is something you have to discuss with a very good and experienced GI doctor. Please do that first before you decide on anything else.
Oh, and one last thing: was your boyfriend every on Asacol or similar medications? If not, why not?
let us know.
Report This| Share this:UC- What is the next step???When you say NP you mean nurse practitioner? <br />Unless I misunderstood that, there is no way in h... that he should be discussing surgery or Remicade or anything with a nurse practitioner! He needs a gastroenterologist ASAP. And you have to get a good one.<br /><br />Secondly, there is no reason to jump into surgery if he only tried steroids and Remicade. My GI gives me steroids in short doses for flare ups and keeps Remicade as an option for when/if steroids stop working. Why was he put on Remicade to begin with? Plus, he needs to be on Remicade longer than just the 3 initial doses to feel better. And he would have to receive them regularly for a longer period (I think the studies took 14 weeks as the marker for when Remicade is effective). If the NP gave him Remicade because she doesn't like steroids side effects, Remicade is, in my mind, 10 times worse because of all the very dangerous side effects, but that's just me.<br /><br />In any case, surgery is something you have to discuss with a very good and experienced GI doctor. Please do that first before you decide on anything else.<br /><br />Oh, and one last thing: was your boyfriend every on Asacol or similar medications? If not, why not?<br />let us know.
OyWithThePoodlesAlready responded:
Hi Krisdavid. I have crohn's - and not in my colon - but I have 2 friends who both had UC and ended up needing to have a full removal, so here are my thoughts. Has he shown signs of precancer or anything else that makes them think he is in imminent danger? Both friends waited till they had to, and got second opinions before taking that step. The one was hemorrhaging and constantly needing blood infusions, the other had so much damage they were very worried about cancer. Someone w UC can probably speak to how wise this was - but they were both young and both hesitant to jump into it.
There are other drugs that many people say work very well. I personally did prednisone for close to a year and my teeth started to chip which really made me worried about my bones.
One of my friends w UC told me about this book which outlines many of the medication options.
100 Questions & Answers About Crohns Disease and Ulcerative Colitis: A Lahey Clinic Guide, Second Edition
by Andrew S. Warner, Amy E. arto
I have it on my kindle and its a decent reference.
I would agree you should see a GI if you can.
There are other drugs that many people say work very well. I personally did prednisone for close to a year and my teeth started to chip which really made me worried about my bones.
One of my friends w UC told me about this book which outlines many of the medication options.
100 Questions & Answers About Crohns Disease and Ulcerative Colitis: A Lahey Clinic Guide, Second Edition
by Andrew S. Warner, Amy E. arto
I have it on my kindle and its a decent reference.
I would agree you should see a GI if you can.
Report This| Share this:UC- What is the next step???Hi Krisdavid. I have crohn's - and not in my colon - but I have 2 friends who both had UC and ended up needing to have a full removal, so here are my thoughts. Has he shown signs of precancer or anything else that makes them think he is in imminent danger? Both friends waited till they had to, and got second opinions before taking that step. The one was hemorrhaging and constantly needing blood infusions, the other had so much damage they were very worried about cancer. Someone w UC can probably speak to how wise this was - but they were both young and both hesitant to jump into it.<br /><br />There are other drugs that many people say work very well. I personally did prednisone for close to a year and my teeth started to chip which really made me worried about my bones. <br /><br />One of my friends w UC told me about this book which outlines many of the medication options.<br /><i><br />100 Questions & Answers About Crohns Disease and Ulcerative Colitis: A Lahey Clinic Guide, Second Edition<br />by Andrew S. Warner, Amy E. arto </i><br /><br />I have it on my kindle and its a decent reference.<br /><br />I would agree you should see a GI if you can.
HannahLeigh89 responded:
You should definitely find a GI doctor. I know that nurse practitioners have a vast knowledge of many areas and I'm not trying to hate on them, but this is one area where you certainly need a specialist, because you've exhausted all her knowledge. Surgery is supposed to be a last resort.
3 Remicade infusions isn't really enough to tell whether or not the medication is going to work, but waiting it out does suck. If he's recently started Remicade, the NP may be hesitant to give him prednisone because then you'll not know whether the Remicade had any effect. You can certainly receive Remicade when you aren't flaring, and you should. Once you start Remicade, it isn't something you stop getting just because you feel a little better. If it works for you, you stay on it until you're in complete remission for quite a while, and even after that sometimes.
While surgery is a last resort, it isn't so bad. It is irreversible, but if it is truly UC, it'll cure it.
I'm a little confused about the way the NP is using Remicade. Can you tell me what his dosage is and what his infusion schedule is like? To me, it sounds like she doesn't know how it works... But I may just be missing information on what she's done.
3 Remicade infusions isn't really enough to tell whether or not the medication is going to work, but waiting it out does suck. If he's recently started Remicade, the NP may be hesitant to give him prednisone because then you'll not know whether the Remicade had any effect. You can certainly receive Remicade when you aren't flaring, and you should. Once you start Remicade, it isn't something you stop getting just because you feel a little better. If it works for you, you stay on it until you're in complete remission for quite a while, and even after that sometimes.
While surgery is a last resort, it isn't so bad. It is irreversible, but if it is truly UC, it'll cure it.
I'm a little confused about the way the NP is using Remicade. Can you tell me what his dosage is and what his infusion schedule is like? To me, it sounds like she doesn't know how it works... But I may just be missing information on what she's done.
Report This| Share this:UC- What is the next step???You should definitely find a GI doctor. I know that nurse practitioners have a vast knowledge of many areas and I'm not trying to hate on them, but this is one area where you certainly need a specialist, because you've exhausted all her knowledge. Surgery is supposed to be a last resort.<br /><br />3 Remicade infusions isn't really enough to tell whether or not the medication is going to work, but waiting it out does suck. If he's recently started Remicade, the NP may be hesitant to give him prednisone because then you'll not know whether the Remicade had any effect. You can certainly receive Remicade when you aren't flaring, and you should. Once you start Remicade, it isn't something you stop getting just because you feel a little better. If it works for you, you stay on it until you're in complete remission for quite a while, and even after that sometimes.<br /><br />While surgery is a last resort, it isn't so bad. It is irreversible, but if it is truly UC, it'll cure it.<br /><br />I'm a little confused about the way the NP is using Remicade. Can you tell me what his dosage is and what his infusion schedule is like? To me, it sounds like she doesn't know how it works... But I may just be missing information on what she's done.
krisdavid responded:
Thanks you guys! You are thinking exactly the same way I am. He was under the care of a gastroenterologist and this Nurse Practitioner worked under him. Well we just found out that the gastroenterologist has left the clinic, so now we don't really know who the doctor is. We are meeting them tomorrow. I also have some names of well know GI docs that we will be meeting with. He is currently taking Lialda and azothiaprin (spelling?). The only reason she is giving us for surgery is that she doesn't want to put him back on Prednisone for his flare, because of the side effects. I think it's bull, because Remicade does have 100x greater side effects. This morning I was venting when I typed the original post, but it sure does feel good to know people understand my frustrations. Thank you for the info; I'll be back on again after our meeting tomorrow. Wish us luck!!
Report This| Share this:UC- What is the next step???Thanks you guys! You are thinking exactly the same way I am. He was under the care of a gastroenterologist and this Nurse Practitioner worked under him. Well we just found out that the gastroenterologist has left the clinic, so now we don't really know who the doctor is. We are meeting them tomorrow. I also have some names of well know GI docs that we will be meeting with. He is currently taking Lialda and azothiaprin (spelling?). The only reason she is giving us for surgery is that she doesn't want to put him back on Prednisone for his flare, because of the side effects. I think it's bull, because Remicade does have 100x greater side effects. This morning I was venting when I typed the original post, but it sure does feel good to know people understand my frustrations. Thank you for the info; I'll be back on again after our meeting tomorrow. Wish us luck!!
HannahLeigh89 replied to krisdavid's response:
Prednisone for a few months is definitely easier on your system than major surgery. Good luck at your meeting.
Report This| Share this:UC- What is the next step???Prednisone for a few months is definitely easier on your system than major surgery. Good luck at your meeting.
Prednisone was definitely the answer for me, along with Lialda, probiotics and Lomotil. Prednisone is definitely one of those drugs that can work wonders in controlling UC, but it can cause side effects. But, what drug doesn't these days!! Getting off of the prednisone when your symptoms are controlled is another issue....very difficult. But, I am one of the lucky ones I guess. I really did not/do not have awful side effects from it. I'm down to 2-1/2 mg. a day now, having been on as much as 40 mg. at first, to control my UC symptoms. It's been up and down with the tapering, but I feel I've got it under control now. My latest taper is going down by 1 mg. every month, and that seems to be "fooling" my system. I hope so anyway.
Long story short...prednisone is a great help in controlling UC symptoms. It was/is for me, and many, many others. Problems with it? Absolutely, but after 2-1/2 years of trying to find the right combo of meds, as mentioned above, prednisone, Lialda, probiotics and Lomotil has had me in remission for 6 months now.
Keep us posted on what your new GI recommends. We do care on this site. It is so interesting to learn what others have experienced and how they have overcome or are still battling their symptoms.
Good luck, take care.
Long story short...prednisone is a great help in controlling UC symptoms. It was/is for me, and many, many others. Problems with it? Absolutely, but after 2-1/2 years of trying to find the right combo of meds, as mentioned above, prednisone, Lialda, probiotics and Lomotil has had me in remission for 6 months now.
Keep us posted on what your new GI recommends. We do care on this site. It is so interesting to learn what others have experienced and how they have overcome or are still battling their symptoms.
Good luck, take care.
Report This| Share this:UC- What is the next step???Prednisone was definitely the answer for me, along with Lialda, probiotics and Lomotil. Prednisone is definitely one of those drugs that can work wonders in controlling UC, but it can cause side effects. But, what drug doesn't these days!! Getting off of the prednisone when your symptoms are controlled is another issue....very difficult. But, I am one of the lucky ones I guess. I really did not/do not have awful side effects from it. I'm down to 2-1/2 mg. a day now, having been on as much as 40 mg. at first, to control my UC symptoms. It's been up and down with the tapering, but I feel I've got it under control now. My latest taper is going down by 1 mg. every month, and that seems to be "fooling" my system. I hope so anyway.<br /><br />Long story short...prednisone is a great help in controlling UC symptoms. It was/is for me, and many, many others. Problems with it? Absolutely, but after 2-1/2 years of trying to find the right combo of meds, as mentioned above, prednisone, Lialda, probiotics and Lomotil has had me in remission for 6 months now.<br /><br />Keep us posted on what your new GI recommends. We do care on this site. It is so interesting to learn what others have experienced and how they have overcome or are still battling their symptoms.<br /><br />Good luck, take care.
forgetfulagain replied to krisdavid's response:
OK, so I'm still not sure what this NP is thinking: he's on Lialda and on both Imuran and Remicade? I cannot believe that she thinks Imuran AND Remicade side effects are "better" than prednisone side effects. TNFs like Imuran and Remicade have the following black box warning:
"[Posted 04/14/2011> ISSUE: FDA continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL, primarily in adolescents and young adults being treated for Crohn's disease and ulcerative colitis with medicines known as tumor necrosis factors (TNF) blockers, as well as with azathioprine, and/or mercaptopurine. TNF blockers include infliximab (Remicade), etancercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi).
BACKGROUND: HSTCL is an aggressive (fast-growing) cancer and is usually fatal. The majority of cases reported were in patients being treated for Crohn's disease or ulcerative colitis, but also included a patient being treated for psoriasis and two patients being treated for rheumatoid arthritis. FDA is now updating the number of reported cases of HSTCL."
I'm not saying he shouldn't be using these drugs, but I do think you need to review this with a Crohn's/UC GI specialist. If he/she brings up prednisone side effects, ask about the TNF side effects... Good luck and hopefully you can give us some good news soon!
Best wishes to you and your boyfriend - he's so lucky to have you!
"[Posted 04/14/2011> ISSUE: FDA continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL, primarily in adolescents and young adults being treated for Crohn's disease and ulcerative colitis with medicines known as tumor necrosis factors (TNF) blockers, as well as with azathioprine, and/or mercaptopurine. TNF blockers include infliximab (Remicade), etancercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi).
BACKGROUND: HSTCL is an aggressive (fast-growing) cancer and is usually fatal. The majority of cases reported were in patients being treated for Crohn's disease or ulcerative colitis, but also included a patient being treated for psoriasis and two patients being treated for rheumatoid arthritis. FDA is now updating the number of reported cases of HSTCL."
I'm not saying he shouldn't be using these drugs, but I do think you need to review this with a Crohn's/UC GI specialist. If he/she brings up prednisone side effects, ask about the TNF side effects... Good luck and hopefully you can give us some good news soon!
Best wishes to you and your boyfriend - he's so lucky to have you!
Report This| Share this:UC- What is the next step???OK, so I'm still not sure what this NP is thinking: he's on Lialda and on both Imuran and Remicade? I cannot believe that she thinks Imuran AND Remicade side effects are "better" than prednisone side effects. TNFs like Imuran and Remicade have the following black box warning:<br /><br /><br />"[Posted 04/14/2011> ISSUE: FDA continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL, primarily in adolescents and young adults being treated for Crohn's disease and ulcerative colitis with medicines known as tumor necrosis factors (TNF) blockers, as well as with azathioprine, and/or mercaptopurine. TNF blockers include infliximab (Remicade), etancercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi).<br />BACKGROUND: HSTCL is an aggressive (fast-growing) cancer and is usually fatal. The majority of cases reported were in patients being treated for Crohn's disease or ulcerative colitis, but also included a patient being treated for psoriasis and two patients being treated for rheumatoid arthritis. FDA is now updating the number of reported cases of HSTCL."<br /><br />I'm not saying he shouldn't be using these drugs, but I do think you need to review this with a Crohn's/UC GI specialist. If he/she brings up prednisone side effects, ask about the TNF side effects... Good luck and hopefully you can give us some good news soon! <br /><br />Best wishes to you and your boyfriend - he's so lucky to have you!
krisdavid replied to forgetfulagain's response:
Thanks for all the well wishes. The meeting went fairly well. We go back on Wednesday; they are going to do some more scopes and blood tests. They are testing how much Remicade is in his system. Since he is starting to see some improvements with the Remicade, we might tighten up his treatment schedule to ensure there are the appropriate amount of medication in his system. We made it very clear that we are not ready for surgery so they stopped pushing us to that option. We will keep everyone posted. Thanks again!!
Report This| Share this:UC- What is the next step???Thanks for all the well wishes. The meeting went fairly well. We go back on Wednesday; they are going to do some more scopes and blood tests. They are testing how much Remicade is in his system. Since he is starting to see some improvements with the Remicade, we might tighten up his treatment schedule to ensure there are the appropriate amount of medication in his system. We made it very clear that we are not ready for surgery so they stopped pushing us to that option. We will keep everyone posted. Thanks again!!
OyWithThePoodlesAlready replied to krisdavid's response:
I'm so glad it went well and they listened to you
in response to the side effects concern, I just wanted to add what I heard from one of my drs. I was telling him my concerns regarding remicade when I was considering it and his response is that there is a small chance of bad side effects w remicade but you're basically guaranteed to get the side effects from prednisone which is why they prefer remicade
in response to the side effects concern, I just wanted to add what I heard from one of my drs. I was telling him my concerns regarding remicade when I was considering it and his response is that there is a small chance of bad side effects w remicade but you're basically guaranteed to get the side effects from prednisone which is why they prefer remicade
Report This| Share this:UC- What is the next step???I'm so glad it went well and they listened to you<br /><br />in response to the side effects concern, I just wanted to add what I heard from one of my drs. I was telling him my concerns regarding remicade when I was considering it and his response is that there is a small chance of bad side effects w remicade but you're basically guaranteed to get the side effects from prednisone which is why they prefer remicade
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