Crohn's Mom
Moderator
So I suppose this is one of those times when you have to decide if the good outweighs the bad with these types of medications...
Gab started Cimzia on May 13th of this year and overall it has done wonders for her Crohn's disease. However, some of the side effects are not so pleasant.
For instance she has now lost over probably 1/3 + of her beautiful hair; it started falling out by the handfuls a few weeks a go and it is quite noticeable.. to those that know her anyhow. I guess she can deal with that as long as it slows down. Hopefully the vitamins will start to help with that.
The other big side effect is her skin. It started with small sores in just a few spots. They were cultured and determined to be a staph infection and she was put on antibiotics (doxycycline), and prescription body wash. The meds seemed to work very quickly. Then after the next dose, same thing except they decided to not use the doxy, just the wash. That didn't work so back on the doxy. Now, this time around (injections a week and a half ago) the sores are so much worse. She had a very large, weeping one on her forehead, and now they're small but spread pretty much randomly everywhere. Back on the doxycycline. I have been emailing pictures and notes back and forth with her IBD nurse this past week trying to figure out what they would like to do this time. I just got a call from her and she said she shared the pictures with the GI doctor and the dermatologist both. They want her to stay on the doxy (full strength) until the sores heal and disappear and then stay on 1 pill a day as a maintenance medication indefinitely. They don't want to stop the Cimzia because it is controlling her (very aggressive) CD so well. I think I agree with this for now, although I am quite aggravated for my daughters sake at the same time. How long do they really think this is going to work before she builds up immunity to the Doxy and then what ?
Right now I am going along with this plan because Gab is off to her freshman year of college and I don't want ANYTHING to interfere with that for her.
I guess I am wondering here...what would you do?
How long would you ride this out, or let your child, before you say enough is enough ?? Any and all opinions are welcome from anyone, even if you're not on Cimzia or Humira or Remicade....this is more about the benefits of any medication outweighing the risks.
P.S....I don't know when it happened but I am so happy to see Cimzia has it's own "place" on the forum now!
Gab started Cimzia on May 13th of this year and overall it has done wonders for her Crohn's disease. However, some of the side effects are not so pleasant.
For instance she has now lost over probably 1/3 + of her beautiful hair; it started falling out by the handfuls a few weeks a go and it is quite noticeable.. to those that know her anyhow. I guess she can deal with that as long as it slows down. Hopefully the vitamins will start to help with that.
The other big side effect is her skin. It started with small sores in just a few spots. They were cultured and determined to be a staph infection and she was put on antibiotics (doxycycline), and prescription body wash. The meds seemed to work very quickly. Then after the next dose, same thing except they decided to not use the doxy, just the wash. That didn't work so back on the doxy. Now, this time around (injections a week and a half ago) the sores are so much worse. She had a very large, weeping one on her forehead, and now they're small but spread pretty much randomly everywhere. Back on the doxycycline. I have been emailing pictures and notes back and forth with her IBD nurse this past week trying to figure out what they would like to do this time. I just got a call from her and she said she shared the pictures with the GI doctor and the dermatologist both. They want her to stay on the doxy (full strength) until the sores heal and disappear and then stay on 1 pill a day as a maintenance medication indefinitely. They don't want to stop the Cimzia because it is controlling her (very aggressive) CD so well. I think I agree with this for now, although I am quite aggravated for my daughters sake at the same time. How long do they really think this is going to work before she builds up immunity to the Doxy and then what ?
Right now I am going along with this plan because Gab is off to her freshman year of college and I don't want ANYTHING to interfere with that for her.
I guess I am wondering here...what would you do?
How long would you ride this out, or let your child, before you say enough is enough ?? Any and all opinions are welcome from anyone, even if you're not on Cimzia or Humira or Remicade....this is more about the benefits of any medication outweighing the risks.
P.S....I don't know when it happened but I am so happy to see Cimzia has it's own "place" on the forum now!