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Crohn's Disease Forum » Treatment » Cimzia/Certolizumab » Pros and Cons of Cimzia?


08-30-2011, 02:16 PM   #1
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Pros and Cons of Cimzia?

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!
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Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
08-30-2011, 03:37 PM   #2
DustyKat
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Hey T,

From what you written I would press on at this point with the Cimzia.

At the end of the day though I think Gabs is the one who has to make the decision. I know the two of you have a wonderful relationship so I would sit down and discuss the pros and cons with her, seek out her opinions on what is happening with her body. She may say that things are fine and she is coping well but it may reach a point in time, if the side effects remain problematic, that this changes. It can be very bittersweet to find a drug that works wonders for a disease only to find that the side effects become so crippling that you have to wonder if it is worth it, is the cure worse than the disease so to speak.

If this was Sarah I would take her lead, while ever she says things are fine then well and good but if she came to me and said she can longer do this then I would support her choice and assist her in her search for another solution.

Much love T, you are always in my thoughts hun,
Dusty. xxxxxxxx
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08-31-2011, 08:25 AM   #3
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Thank you Dusty
I had a phone chat with her last night about all of this.
She gets so aggravated with me trying to figure out, by asking questions, exactly what to report to the doctor for her. So I simply suggested that she starts making the phone calls, or sending the emails herself, and I will gladly step aside as the "middle man". Well that was a big NO on her part LOL. She's not quite ready to take over in that area just yet; I think she will be soon though.
I explained to her that this is her body and that there are other avenues of treatment that she hasn't tried yet, such as Humira, and that she doesn't have to live like this and just accept it if that's not what she wants to do. She has decided for now that she will continue the antibiotics for a while longer, but she is really not happy about having to stay on it indefinitely; mostly because she doesn't believe that it's going to solve the problem.
She is coming home for the long holiday weekend on Friday and the nurse has requested that I contact her after I see her myself and give her an update on how I think the medication is working. So I will do that, but I am thinking that I will also make sure that I call when Gab is right next to me and "put her on the spot" and see if she will talk to her for herself Maybe that will be a step further into helping her learn to speak up and take over in her own care. Ill probably just get the death stare though ! LOL
08-31-2011, 09:01 AM   #4
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Sounds like it's all well in hand. Good on ya T!

Oooo I bet you're looking forward to the long weekend so you can eyeball her!

Seriously though, have fun catching up on the weekend T and I hope Gabs is okay...

Dusty.
08-31-2011, 01:02 PM   #5
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HI Tracy,

Can't contribute anything as to your question re Cimzia's benefits/side-effects. I hope its possible that her side-effects will settle down and a choice won't have to be made.

But, just wanted to mention something re the sores on her skin. Are Gab's sores leaving any marks? My daughter had some sores last year, everywhere - her ears, chest, back, arms, etc. Some were small (pimple size), others were about the size of a nickel, some overlapping. They looked like the top layer of the skin had just 'melted' off leaving an bubbly/bumpy open sore (not sure how else to describe it). After testing for months with her GP and 2 dermatologists - bed bugs, infections, allergies, metal sensitivities - we came to no 'diagnosis' and the sores began to go away. But, they left some scarring... the last dermatologist suggested a product that has worked well at erasing lots of the scarring - La Roche-Posay Mela-D (used for anti-dark spot care under their anti-aging line).

Hope Gab is enjoying university and is feeling well! Enjoy your weekend with her, I'm sure you're missing her lots!

Last edited by Tesscorm; 08-31-2011 at 01:05 PM. Reason: spelling correction
08-31-2011, 02:10 PM   #6
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Yes...they are scarring
Thank you for the recommendations...I will add it to the list of things we are shopping for this weekend. I feel so bad for her and I am really hoping the ones on her face are at least nice enough to not scar
08-31-2011, 02:47 PM   #7
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Hopefully the Mela-D will work for her... It takes a bit of time so she has to be patient and consistent but it has helped my daughter. It comes in two formulations... we bot the gel and she just dabs it on at night a bit before bed. By the way, I found the marks that were left on my daughter's face (and, actually chest too) went away the quickest! Probably because its the most exposed area to the elements, gets washed, scrubbed, moisturized, etc. the most... The ones on her tummy and back are still there but lighter than before...
08-31-2011, 04:20 PM   #8
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I am on Cimzia for almost 2 years now and have not had these symptoms, except I did have some hair loss for a while. I started taking GNCs (General Nutrition Center's) Hair skin and nails and my hair started to grow back. It has a huge amount of Biotin in it as well as other things. Check with the Dr, but I hope this helps.
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09-05-2011, 08:17 AM   #9
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Just a little update :

I spent the weekend with Gab since she came home for the long weekend...oh how nice it was to lay eyes on her myself; no more guessing! LOL
Anyhow, it seems from the looks of her that the antibiotics and prescription soap is working, and working pretty well. The "large sore" on her forehead is almost gone, and so are most of the small ones. They take a very long time to heal, but they are healing none the less.
I don't think I mentioned on here before that her fingers were all also infected; well I should say the skin around her fingernails. My theory a few weeks ago is that this is what started the sores this time around. She had a small paper cut about a month ago that got infected, then everything else started after that; or re-started. I could be way off, but I still think, after looking at her fingers again, that my theory may still hold true somewhat. Or maybe not..who knows...I do tend to "fish" for solid, easy, answers a lot ! LOL.
So I reminded her that even tho they are healing, that there are still a few more ones that are new and are not healed yet, so she is not supposed to go down to just 1 pill a day until they are ALL healed. Hopefully she will remember to keep up with her medications. It's so hard to let her go and not bug her like crazy through text, phone calls, etc to remind her !
Ahh...the joys of your first child leaving home, plus the addition of a chronic disease on top of it....no wonder my hair is falling out! lol
09-07-2011, 06:57 AM   #10
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Thanks for the update T!

I know that eye balling feeling well!

It is so fab to hear that Gabs sores are responding to treatment, YAY! What a relief for you all, phew...

Thinking of ya mate,
Dusty. xxxxxxxx
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