Crohn's & CF

J

julie61554

Member
I was recently diagnosed with Crohns disease. It took 10 years to get a correct diagnosis. My gastro started me on pentasa a little over a month ago. I was doing good until Monday. I am having another flare up. I went back to see him today and now he wants to start me on another medication called Remicade.

I was wondering if anyone else on here has Crohn's and CF and have used this medication? I am a little nervous about taking it since it suppresses your immune system.

If anyone has used this, can you tell me how you have done on it? Thanks.

Julie 39 w/cf-burkholderia gladioli, staph
 
J

julie61554

Member
I was recently diagnosed with Crohns disease. It took 10 years to get a correct diagnosis. My gastro started me on pentasa a little over a month ago. I was doing good until Monday. I am having another flare up. I went back to see him today and now he wants to start me on another medication called Remicade.

I was wondering if anyone else on here has Crohn's and CF and have used this medication? I am a little nervous about taking it since it suppresses your immune system.

If anyone has used this, can you tell me how you have done on it? Thanks.

Julie 39 w/cf-burkholderia gladioli, staph
 
J

julie61554

Member
I was recently diagnosed with Crohns disease. It took 10 years to get a correct diagnosis. My gastro started me on pentasa a little over a month ago. I was doing good until Monday. I am having another flare up. I went back to see him today and now he wants to start me on another medication called Remicade.

I was wondering if anyone else on here has Crohn's and CF and have used this medication? I am a little nervous about taking it since it suppresses your immune system.

If anyone has used this, can you tell me how you have done on it? Thanks.

Julie 39 w/cf-burkholderia gladioli, staph
 
S

Sunshine53

New member
Julie... I do not have CF, but my 8 yr old granddaughter does. I have had Crohn's Disease for 30 years and just recently found out that I am also a CF carrier. My husband is a physician and we have just begun researching the link to these 2 diseases. If you have any Crohn's questions regarding meds, symptoms, surgeries and just plain living it, please don't hesitate to ask. I am sure I have been at that same place sometime in my past. I am actually in a flair right now and we have just discovered that flares happen more often during seasonal changes and this year has been really bad with the pollen, etc. See, this is also a disease that no one knows much about.
Again, please don't hesitate to shoot me some questions, if needed. Regarding remicaide. This is one I haven't yet taken since my physician only prescribes it if you can't reduce the steroids. I have an MD visit on Tues of next week and we might be discussing this since I have been on 30mg of preds for over a month and can't stand much more of it! Hang in there and believe me... crohn's is manageable once you learn more about how it affects you and what to avoid.... I have been on 6-MP for the last 15 years and this also is an immunosuppressive and it has helped tremendously.
 
S

Sunshine53

New member
Julie... I do not have CF, but my 8 yr old granddaughter does. I have had Crohn's Disease for 30 years and just recently found out that I am also a CF carrier. My husband is a physician and we have just begun researching the link to these 2 diseases. If you have any Crohn's questions regarding meds, symptoms, surgeries and just plain living it, please don't hesitate to ask. I am sure I have been at that same place sometime in my past. I am actually in a flair right now and we have just discovered that flares happen more often during seasonal changes and this year has been really bad with the pollen, etc. See, this is also a disease that no one knows much about.
Again, please don't hesitate to shoot me some questions, if needed. Regarding remicaide. This is one I haven't yet taken since my physician only prescribes it if you can't reduce the steroids. I have an MD visit on Tues of next week and we might be discussing this since I have been on 30mg of preds for over a month and can't stand much more of it! Hang in there and believe me... crohn's is manageable once you learn more about how it affects you and what to avoid.... I have been on 6-MP for the last 15 years and this also is an immunosuppressive and it has helped tremendously.
 
S

Sunshine53

New member
Julie... I do not have CF, but my 8 yr old granddaughter does. I have had Crohn's Disease for 30 years and just recently found out that I am also a CF carrier. My husband is a physician and we have just begun researching the link to these 2 diseases. If you have any Crohn's questions regarding meds, symptoms, surgeries and just plain living it, please don't hesitate to ask. I am sure I have been at that same place sometime in my past. I am actually in a flair right now and we have just discovered that flares happen more often during seasonal changes and this year has been really bad with the pollen, etc. See, this is also a disease that no one knows much about.
Again, please don't hesitate to shoot me some questions, if needed. Regarding remicaide. This is one I haven't yet taken since my physician only prescribes it if you can't reduce the steroids. I have an MD visit on Tues of next week and we might be discussing this since I have been on 30mg of preds for over a month and can't stand much more of it! Hang in there and believe me... crohn's is manageable once you learn more about how it affects you and what to avoid.... I have been on 6-MP for the last 15 years and this also is an immunosuppressive and it has helped tremendously.
 
S

Sunshine53

New member
Julie... I do not have CF, but my 8 yr old granddaughter does. I have had Crohn's Disease for 30 years and just recently found out that I am also a CF carrier. My husband is a physician and we have just begun researching the link to these 2 diseases. If you have any Crohn's questions regarding meds, symptoms, surgeries and just plain living it, please don't hesitate to ask. I am sure I have been at that same place sometime in my past. I am actually in a flair right now and we have just discovered that flares happen more often during seasonal changes and this year has been really bad with the pollen, etc. See, this is also a disease that no one knows much about.
Again, please don't hesitate to shoot me some questions, if needed. Regarding remicaide. This is one I haven't yet taken since my physician only prescribes it if you can't reduce the steroids. I have an MD visit on Tues of next week and we might be discussing this since I have been on 30mg of preds for over a month and can't stand much more of it! Hang in there and believe me... crohn's is manageable once you learn more about how it affects you and what to avoid.... I have been on 6-MP for the last 15 years and this also is an immunosuppressive and it has helped tremendously.
 
S

Sunshine53

New member
Julie... I do not have CF, but my 8 yr old granddaughter does. I have had Crohn's Disease for 30 years and just recently found out that I am also a CF carrier. My husband is a physician and we have just begun researching the link to these 2 diseases. If you have any Crohn's questions regarding meds, symptoms, surgeries and just plain living it, please don't hesitate to ask. I am sure I have been at that same place sometime in my past. I am actually in a flair right now and we have just discovered that flares happen more often during seasonal changes and this year has been really bad with the pollen, etc. See, this is also a disease that no one knows much about.
<br />Again, please don't hesitate to shoot me some questions, if needed. Regarding remicaide. This is one I haven't yet taken since my physician only prescribes it if you can't reduce the steroids. I have an MD visit on Tues of next week and we might be discussing this since I have been on 30mg of preds for over a month and can't stand much more of it! Hang in there and believe me... crohn's is manageable once you learn more about how it affects you and what to avoid.... I have been on 6-MP for the last 15 years and this also is an immunosuppressive and it has helped tremendously.
 
J

julie61554

Member
Thank you for the information. However, since I posted this, I am on a regimen that has worked in keeping it under control. Oddly enough, it is by suppressing my monthly cycles. I had figured out that I would flare for 2 weeks out of the month from the time I ovulated until my cycle started. Then I would have 2 good weeks. I also noticed that while I was pregnant (this was 10 years ago) that I didn't have problems either. So my dr. and I figured out it was related to hormones. We know for sure it is Crohns disease because he sent me to the University of Chicago for testing; however, they are using a treatment that is normally used for Endometriosis. It is an injection I take every 3 months called Depo Lupron. I think it is safer for me than the remicade as this does not suppress my immune system. And it definitely works...for me anyway.

Thanks for the information and it is nice to know that that I can ask you questions.

Julie 42 w/cf-burkholderia gladioli, staph
 
J

julie61554

Member
Thank you for the information. However, since I posted this, I am on a regimen that has worked in keeping it under control. Oddly enough, it is by suppressing my monthly cycles. I had figured out that I would flare for 2 weeks out of the month from the time I ovulated until my cycle started. Then I would have 2 good weeks. I also noticed that while I was pregnant (this was 10 years ago) that I didn't have problems either. So my dr. and I figured out it was related to hormones. We know for sure it is Crohns disease because he sent me to the University of Chicago for testing; however, they are using a treatment that is normally used for Endometriosis. It is an injection I take every 3 months called Depo Lupron. I think it is safer for me than the remicade as this does not suppress my immune system. And it definitely works...for me anyway.

Thanks for the information and it is nice to know that that I can ask you questions.

Julie 42 w/cf-burkholderia gladioli, staph
 
J

julie61554

Member
Thank you for the information. However, since I posted this, I am on a regimen that has worked in keeping it under control. Oddly enough, it is by suppressing my monthly cycles. I had figured out that I would flare for 2 weeks out of the month from the time I ovulated until my cycle started. Then I would have 2 good weeks. I also noticed that while I was pregnant (this was 10 years ago) that I didn't have problems either. So my dr. and I figured out it was related to hormones. We know for sure it is Crohns disease because he sent me to the University of Chicago for testing; however, they are using a treatment that is normally used for Endometriosis. It is an injection I take every 3 months called Depo Lupron. I think it is safer for me than the remicade as this does not suppress my immune system. And it definitely works...for me anyway.
<br />
<br />Thanks for the information and it is nice to know that that I can ask you questions.
<br />
<br />Julie 42 w/cf-burkholderia gladioli, staph
 
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