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Cimzia Club Support Group

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Stacyface

Most health food stores or vitamin retail stores will have the shampoo. You can also find it in the supermarket in the organic section or a Whole Foods type store. I think Jason is one brand that I purchased. It is a blue bottle. The other was an organic biotin shampoo...don't recall name...bottle was green and white :)
 
D

Donna1

I've been losing my hair since I started Cimzia, really bad. I even considered stoping it because of the hair loss, but Im afraid of what would happen to my Crohns if I did. Cimzia is helping me some. I started a down ward spiral on getting sick all the time, Sinus infection, Strep throat, over and over the past two months. I feel like its hard to get back to being healthy all of a sudden. I did really well the first 6 months but now it seems the crohns is ok its just everything else is not.
 
T

ThanksP

Donna, try the Biotin, it really does work! It takes awhile and you have to stick with it, but it's good stuff. Glad the Cimzia seems to be helping the Crohn's. Hopefully now you can work on getting everything else in order as well. Best of luck to you.
 
D

Donna1

Thank you for the Biotin advice, I will definately go out and get some this weekend. (I'll have to hide it from my husband LOL).

I'll try anything at this point.
 
Sarac8275

Sarac8275

Huh.. Biotin shampoo? I got the supplements, didn't realize there was a shampoo. Wonder if the supplements do any good?

@Donna - I know what you mean with feeling sick all the time. The cimzia is working...well.. okay (not as well as I'd like), but I am always feeling weak, sick, tired, and unmotivated, which is unlike me! I hate it :[
 
poopaholic

poopaholic

Location
under dark cloud
My doctor put me on cimzia, and before it came in the mail, I developed a tooth infection, and my doctor said I cant start cimzia until dentist says there is no infection. Oh by the way dealing with the veterans hospital, and since I am not 100% disabled I am not eligible for dental. So went to local dentist and he said He can not say all infection is gone till all teeth pulled. $3000 plus another $3000 for dentures, and of course I dont have $6000, but have found another denist that can do it cheaper, but not till march to get started. So my questions are, can youy take cimzia with bad teeth, and how long will it stay good in my fridge "they have sent me 4 doses" ?
 
T

ThanksP

There is an expiration date on the end of each box. Mine are good until Nov 2012. You should always check that expiration date before you inject anyway.

I can't imagine the dentist won't give you antibiotics and get rid of the infection before you do the dental work. Sounds like to me they want their money. Did you explain to the dentist you full situation regarding the Cimzia? If so and he still wouldn't give you antibiotics to take care of the infection, I'd look around for another dentist. But you *do* have to clear up the infection (not cavities, etc) before starting the Cimzia.


Just curious, are you getting treatment for your Crohn's through the VA? How is it dealing with them?
 
poopaholic

poopaholic

Location
under dark cloud
Found the expiration date 12/2011, thank you. as far as the infection goes, The VA did give me an antibiotic to clear it up, but my doctor insisted I see a dentist to make sure infection is gone. He was very adamant about getting dental clearance. The VA refuses to see me over it. I have spoken with an advocate numerous times with no luck, even thou in the benefits guidelines it should be covered since it directly implicates my current condition I am being treated for. Their excuse is cimzia is not on the list. I saw dentist and he would not guarantee the infection is gone without extensive work. So instead of searching for lucky dentist, I am going to get it all squared away before starting the cimzia, "since it needs done anyway". Far as dealing with the VA this is actually the only complaint I have had with them. I was surprised the sent me the cimzia for only a $8 copay. My only concern is I hope my crohns stays manageable till I can start the new treatment. Thank you Brad
 
B

Beast2351

I've been on Cimzia for roughly 6 months now, and it's been working great. I had previously been on Humira, and that was working well too, however I started to get these extremely bad stomach pains (and i have a pretty high pain tolerance) on the 2nd night, and sometimes 3rd night after i would do my injections. I know this probably sounds really strange but this pattern continued for a long enough time to know that it wasn't a coincidence.

My doctor decided it would be good to try to switch to Cimzia. Cimzia has been working great for me, however, the night after my last injection, i got a veryyy similar pain to the pains i would get with Humira. I described the pain to my doc, and he prescribed me a pretty powerful anti-spasmodic called belladonna. I'm hoping that if the pain comes back after my next injection that these meds will help.

Has anyone had anything similar to this happen to them?
 
T

ThanksP

I don't know that I can contribute those pains to Cimzia but I have had those pains. Too many times to count, actually. I've taken belladonna-phenobarbital for it previously and it worked quite well.
 
S

Stacyface

countrycoffeehouse said:
anyone take Methotrexate along with Cimzia? The cimzia is not working very well and I wonder if anyone mixes it?
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My son is on 1 x a week 25mg oral Methotrexate with the Cimzia (and pred too). He started out with a far lower dose but it really didn't help until, on a second opinion, a doc recommended bumping him up to 25mg. It helped. This same doc, however, recommended 25mg weekly injectable. We decided to try oral first. Hope that helps.
 
bry33

bry33

i don't know if anyone mentioned this or not but when i did my injections today it started leaking out am i doing it wrong or does this usually happen?
 
B

Beast2351

ThanksP said:
I don't know that I can contribute those pains to Cimzia but I have had those pains. Too many times to count, actually. I've taken belladonna-phenobarbital for it previously and it worked quite well.
Click to expand...
Thanks for the response, it's good to know that this medication should help.
 
chrisnsteph1022

chrisnsteph1022

I had my first injections today! I'm excited about hopefully feeling better very soon. The nurse that taught me how to inject said I should notice improvement in 3 days.
 
chrisnsteph1022

chrisnsteph1022

I've seen some mention labwork. My GI didn't say anything about getting labwork done. He just said he wanted to see me 6 weeks after my first dose. Is that when they'll do the labs?
 
T

ThanksP

Did you have a TB test? That was the only test I had prior to starting Cimzia. In fact, the phamacy would not ship my Cimzia without it first. Later on I had a Toxo Antibody test to see if my Toxoplasmosis had been reactivated. Periodically I have labwork done to check my liver counts, etc.

Hope it works for you. I started to feel better right away after my first injections.
 
Sarac8275

Sarac8275

I need advice! It's been over 4 months since I started Cimzia, and it's really doing no good. In fact, in the last week, things have been pretty tough. When I started, they said it would take no more than 3 months to fully kick in. Should I tell my GI I want to do away with Cimzia and possibly try something like Humira, etc.??
 
T

ThanksP

Well, this will be interesting...

Cimzia stopped working for me, even with the double doses. My doctor wants me to get on a clinical trial but they aren't taking patients for at least another month. Soooooo, I'm now taking Cimzia (back to regular, monthly dose), 60mg of Prednisone, and 6MP. Holy Immune suppression! We'll see where I am in a month and go from there. I guess I should start investing in Purell and surgical masks, geez.

Has anyone else done any combo of drugs similar to this?
 
T

ThanksP

Sarac8275 said:
I need advice! It's been over 4 months since I started Cimzia, and it's really doing no good. In fact, in the last week, things have been pretty tough. When I started, they said it would take no more than 3 months to fully kick in. Should I tell my GI I want to do away with Cimzia and possibly try something like Humira, etc.??
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I'd definitely talk to you doctor about what to do. Cimzia took effect for me right away but it seems to take a little longer for a few. Can't imagine it'd take longer than 4 months though. I talked to my doctor recently and we decided not to even bother with Remicade since Cimzia is supposedly stronger than Remi. But Cimzia *did*work for me at one point. Hope you get some answers soon and get to feeling better soon!
 
Sarac8275

Sarac8275

Looks like I'll be stopping Cimzia since it's apparently just not right for me. :[ Better luck next time, thanks for all your help guys!
 
S

Stacyface

It took a very long time for it to help my son. It wasn't until they added in the 25mg of Methotrexate that things started getting better. Have you talked to your GI about that?
 
Sarac8275

Sarac8275

Stacyface said:
It took a very long time for it to help my son. It wasn't until they added in the 25mg of Methotrexate that things started getting better. Have you talked to your GI about that?
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Methotrexate? No, I haven't. But along with it seemingly worsening my flare, it has also made me lose alot of hair (and it's still falling out). Doc has suggested stopping and trying Humira. He says if that fails, he "may" just try me on something else--the name i've forgotten. He said he'd hate to put a 23 year old woman on it, and seemed very hesitant to do so.

Well, guess Cimzia works for some, and not for others. I do genuinely hope for the best for all of the rest of you!:hug:
 
chrisnsteph1022

chrisnsteph1022

After two weeks on Cimzia+Entocort, I'm down to 2-3 bathroom trips/day (from 10-15 2 weeks ago). Blood is 100% gone. Nausea is gone. Pain is minimal, more of a discomfort than actual pain. I'm VERY happy with the results so far. I just did my second loading dose last night, then I'll have another in 2 weeks. Then I'll be on the every 4 weeks plan. I go back to see my GI in 4 weeks and will be asking about weaning off the entocort.
 
D

Donna1

anyone have a bad month but then feel better after their next injections? Seems like all of a sudden Im not doing as well as I was. I'm hoping that after my next injections I'll feel better. I really do not want to be pushed up to every two weeks.... I hate the injections, not as much as I hate Crohns but at least I new it was helping but now I'm skeptical.
 
J

javery

I just did my 2nd dose of injections tonight. I am also on Imuran with it so I am not sure which is doing what, I have run into some fatigue during the first injections but again I am not sure if it was the initial Cimzia shots or the initial Imuran, as I started both at the same time. The fatigue started going away, so I will be able to tell after tonight if Cimzia is causing it.

**update**

The cimzia DEFINITELY causes me to get tired, about an hour or two right after I did the injections, I because very very tired, everything started feeling heavy and slow, I laid down and I woke up the next morning! This stuff is great to help me sleep... I hope it works for everything else too
 
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scrapper1264

scrapper1264

My son got diagnosed in Sept10 and was on remicade until a few weeks ago. It seems like he's built up antibodies against it so dr wants to put him on cimzia. We are in the process of changing his diet so I am wondering - wait to see if changes in diet work before starting cimzia? If cimzia works how will we know if it's the diet or cimzia?
 
T

ThanksP

scrapper1264 said:
My son got diagnosed in Sept10 and was on remicade until a few weeks ago. It seems like he's built up antibodies against it so dr wants to put him on cimzia. We are in the process of changing his diet so I am wondering - wait to see if changes in diet work before starting cimzia? If cimzia works how will we know if it's the diet or cimzia?
Click to expand...
What type of "diet change" are you doing?
 
scrapper1264

scrapper1264

We are trying to go organic and gluten-free. Also adding flaxseed oil, aloe vera, yogurt and alkaline water to his diet. We'll see what happens....
 
T

ThanksP

I've always done organic and mostly gluten free and am on Cimzia. I wouldn't worry about trying both at the same time.

Best of luck with the Cimzia, hope it helps him out!
 
L

lanaklingenberg

Have you checked with the company that makes Cimzia - they have a program that works with patients w/o insurance as well as one that works with insurance (we don't even have a copay b/c of this program). Might be worth a shot (pun intended)!
 
poopaholic

poopaholic

Location
under dark cloud
Well I was finally able to give myself the cimzia injection monday "daughter actually". I have been very nervous about it. I have had it in my fridge since january. My G.I. wouldn't let me take it tell all tooth invections were gone. So after haveing 26 teeth extracted, I am finally on cimzia. Shots were easy no side effects at all, just hope my health improves. Now looking forword till next injection, also get to decrease my entocort to 6mg a day.
 
T

ThanksP

Oh my, bless your heart. The injections must be nothing after all those extractions. I hope the Cimzia works for you especially after everything you have been through just to be able to start it.
 
D

dee

Haven't tried it yet

I had a horrible flare up in December and bled very badly. I am on Entocort and was going to switch to Cimzia but then the bleeding stopped so I stayed on the Entocort. I was reluctant to start Cimzia because of the threat of cancer. Does that bother anyone or do you know of anyone who has gotten cancer from Cimzia? Also my doctor didn't know anything about the drug but my insurance company wouldn't let me take Remicade but okayed Cimzia. I tried Humira for 1 year. It helped my Crohns but made me enimic, high triglycerides, shingles, and walking pneumonia. It really weakened my immune system. I've been on Entocort for 1 year now and wonder how long I can stay on it?
 
poopaholic

poopaholic

Location
under dark cloud
my doctor has left me on 12 400mg mesalamine a day even thou it didn't work for my crohns. He said it lowered my chances of getting cancer. I dont know if it does or doesn't, but it is an expensive drug and it gave me some comfort.
 
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ThanksP

There is no difference in the cancer risk with Cimzia than Humira or Remicade. The chances are very small and usually it occurs in teens taking it for RA. I didn't hesitate to take it because I couldn't keep living the way I was prior to Cimzia. The benefits far outweighed the risks in my opinion.

I've never heard of Mesalamine reducing a chance of cancer. Perhaps the doctor meant it would reduce inflammation which would in turn reduce your chance of colon cancer from the Crohn's.
 
D

dee

That's interesting you have to also take prendisone. Isn't the Cimzia suppose to get you off the steriods?
 
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ThanksP

I'm on Prednisone because the Cimzia stopped working after about a year. I went from monthly injections to bi-weekly. When that didn't work, I had to start the Pred and 6MP. I should start tapering off it after my next round of labwork this week. The 6MP combo with the Cimzia really seems to be working...I hope it stays that way. I've run out of options if this stops working.
 
A

Arby

I've been on Cimzia for 2 months now. I was on Embrel and Humira before that. I'm still waiting for the "magic" to happen.

Besides the Cimzia (2 shots monthly), I'm currently on Llada (4x 1.2GM daily) and 25mg of Methotrexate weekly.

I've been suffering since 6/09. I've been on a bunch of medicines in my quest to finally getting some relief for my Crohn's. Prednisone worked the best but we all know the long-term side effects are far worse than the short-term benefits.

So... my question is, is anyone doing better on the Cimzia yet?
 
bwightman

bwightman

I started taking Cimzia in mid-February along with 100mg Imuran. It's working great for me so far. I noticed improvments probably about 2 or so weeks into it, but I know that's different for everyone. I've previously been on Asacol, Pentasa, Humira, and Remicade. The Remicade defintely worked the best for me but I built up enough antibodies over time that it was no longer effective. My doctor had me start Imuran with the Cimzia in the hopes that the Imuran would help to slow the creation of antibodies for Cimzia.

The big test will be about a month or so from now, which is when I typically flare...flares in late spring/early summer have been an annual occurence for me since my diagnosis.

Beth
 
scrapper1264

scrapper1264

Well, the insurance company will not pay for the cimzia. I received this long letter explaining that there have not been enough studies completed with pediatric patients. Has anyone else had this problem?
 
L

lanaklingenberg

bwightman - don't know which doc is mistaken, but my daughter's doc explained to us that b/c they took the mouse dna out of the mix with Cimzia (its in Remicade), people don't build up antibodies. He flat out said there was no need to keep an epi-pen on hand b/c there have been no reported reactions to it like there have been to Remicade.

scrapper1264 - insurance companies make us all crazy. have you talked to the Cimzia manufacturer? Ask your doc to write a letter saying it is a necessary next step if your son can no longer take Remicade. Also, maybe ask the insurance co what they will cover (e.g., Humira or another TNF med). Just a couple thoughts.
 
T

ThanksP

scrapper1264 said:
Well, the insurance company will not pay for the cimzia. I received this long letter explaining that there have not been enough studies completed with pediatric patients. Has anyone else had this problem?
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That's entirely possible. I have seen a bunch of clinical trials involving children and adolescents and the use of Cimzia. So yeah, perhaps there isn't enough data on it yet. It is still a rather new drug. That's too bad, hopefully you will find something that will work...or a way to get the insurance co. to pay for it. Best of luck to you!
 
D

dee

Cimzia

That's funny your insurance company wouldn't okay the Cimzia. I have Blue Cross and my doctor wanted me to take Remicade but Blue Cross said no, they wanted me to take Cimzia. I figured it's because Cimzia would be cheaper since you have to go to a hospital for the Remicade infusion. Just keep fighting with the insurance company and they usually give in.
 
L

lanaklingenberg

Arby - My daughter briefly did ok on Remicade, before she built up antibodies and had a full out anaphylactic reaction to it. She has not responded to Humira or Cimzia. Her doc says they now believe there are types of Crohns that don't respond to the TNF blockers. Maybe that's your situation?
 
scrapper1264

scrapper1264

Lana - We went through 2 appeals involving the doctor and it was still rejected. They are now working on Humira. The pharmacy rejected it so now we are in appeal with the insurance company.

My son is now on the methotrexate injection. He started out with the pills but since everything is getting rejected they wanted him on the most potent form of methotrexate.

ThanksP - Thanks for your well wishes!
 
D

dvation

Newbie here - just wanted to say hi. Been diagnosed since 2001 and recently had an allergic reaction to Remicade. Doctor said Remicade is made up of 50% mouse protein whereas Cimzia is only 3%, but also a different type of protein that is encapsulated to last longer in the blood stream. I'm still cautious about trying this because of my past experience with Remicade but hoping it works!
 
L

lanaklingenberg

Welcome Dvation! My daughter Hannah had a reaction to Remicade a few years back, so we were very anxious about both Humira and Cimzia. Her doc said the same thing - no reported anaphylactic reactions to it. We got an epi-pen to have on hand just in case. She did not have any reactions to either of the other meds. Hope this helps alleviate your concerns! I hope it works for you. We have since figured out that Hannah must have a type of Crohns that is non TNF responsive.
 
D

dvation

Thanks Lana. That's very encouraging news! Thanks for posting. If your daughter does not respond to the anti TNF drugs, what is she currently using for treatment?
 
C

cindybt

I started Cimzia 3 months ago. It has helped the Crohn's, I can now eat without worrying about how close I am to a restroom. And the stomach cramps are much better. However, the side effects are not so good. My hair is falling out in clumps, I have bad fatigue, and my joints hurt. So I am still on the fence with this one.

Have tried:
Predisone
Endocort
Pentasa
Imuran
 
raechel

raechel

I know this is an older post, and this might not even be relavant to you now, but just incase it is... I have aetna as well and they wanted me to pay about 1,500 out of pocket for my shots. My doctor referred me to Diplomat Specialty Pharmacy ( its a mail order, not sure where all they deliver to) and they got me signed up for a Cimzia co-pay assistance card that evidently Cimzia offers. I am told the discount offers varies by what each particular pharmacy contracts with them... but anyway, they paid $1000 of the 1500!
If this is still a possibility for you it might be worth investigating. Hope this helps!


Poppysocks said:
I wanted to try Cimzia but my insurance (Aetna) would only cover half of it. So I was forced to try Humira after being on Remicade for the last 6 years. Doesn't look like the Humira is working after about a month so I'd like to eventually try Cimzia if I can get my insurance to cover it.
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Z

zappa

first off, thanks DustyKat for the FYI on this thread\forum.

Cimzia has not been approved in Canada yet for CD but I have been in a study group for the last 2yrs, which has allowed me to take the drug for free. The study will end in 3yrs so I hope that cimzia will be approved as it has helped me a lot more then other meds\drugs out there.

I was also told by my GI (many times) to quit smoking as it is equal to cimzia on how it will benefit my disease! I have finally taken his words to heart and gave up the butts! it's almost been a month since I quit so I'm hoping for major improvement after 6mths of quitting!

Back to Cimzia. Since I've been on the drug I found that the pains in my stomach stopped within a couple of weeks of being on the drug, so that was a big plus. I do still have my issues with many stops to the bathroom although this has improved a little since I quit smoking. The shots them self don't really hurt at all, there is some stinging but I told that it maybe due to the preservative in the drug. Apparently everyone in the study has bitched about the stinging. Just to give little back ground, when I started the study the drug was made on site so it was fresh, now the drug is made in a lab and shipped to the treatment centers...but a little stinging is nothing when looking at the big picture! The worst part about the drug is not the drug it self but all the blood work, GI visits, testing, poking etc... at least I know I'm being watched!

I really do hope this drug will work some magic as going under the knife means I go on the bag due to where my crohns is located...not good!

Mike.
 
chrisnsteph1022

chrisnsteph1022

After 6 months on Cimzia, it seems to be losing its effectiveness. My GI said to start doing one shot every 2 weeks (instead of 2 every 4 weeks). We're going to give that a shot and check back in 3 months. I'm also having gallbladder issues (getting it removed next week), so I don't know how much of my symptoms are contributed by that.
 
S

skandar

Dear Zappa: I'm moving to Victoria, BC for school in Sept. from LA where I have been on Cimzia for 2 years, and so far so good with the drug. I'm Canadian. Would you be willing to let me know if your study group is in Victoria or Vancouver as I'm looking to stay on Cimzia once in BC. Thanks, any information or advice would be helpful.
Skandar
 
A

Arby

A little rant... I gave myself the injections again last night. WHY can't the makers of Cimzia put the medicine in an Auto-Pen like Humera? Pushing that needle into my body skeeves me. Pushing a button and letting the pen do the work is alot easier for me. Is it just me that feels this way?

Other than that... Am I doing better? Somewhat. I just wait for the day I can finally be in remission. It's been 2 long years now. I've lost so much weight that people I haven't seen in awhile don't even recognize me. Fortunately I'm almost 180 pounds now so I guess the Cimzia is working. When I was down to 155 pounds it scared the heck out of me. Especially since I was 260 before getting sick.

Ok, rant over. Have a great day!
 
T

ThanksP

Is Humira a gel like Cimzia? It might have to do with the consistency of the medication. If I injected the Cimzia too quickly, not only did it hurt more, but it also would bubble up under the skin and leak out. I'm thinking that's why they don't have an auto-pen...yet.
 
A

Arby

ThanksP said:
Is Humira a gel like Cimzia? It might have to do with the consistency of the medication. If I injected the Cimzia too quickly, not only did it hurt more, but it also would bubble up under the skin and leak out. I'm thinking that's why they don't have an auto-pen...yet.
Click to expand...
It might be the consistency. One thing for sure is it doesn't hurt as much as the Humira going in. My friend takes Embrel for Arthritis. His doctor tried to change him over go Humira but he hated the stinging pain so mauch he went right back on Embrel.
 
Aloysius M

Aloysius M

Well I'm game for the Cimzia club. Finally got all the testing done, insurance snafu's taken care of, and got to stick or rather double stick myself today with the first round of loading doses. My Gi doc is keeping me on my pred and apriso during the first month till the cimzia builds up. I hope this works at keeping everything happy once I start to do the pred taper.

On a funny note did anyone see in the book of directions that once you stick it in and pull back on the plunger to make sure your not in a vain by accident that if there is blood in the syringe you should immediatly pull the syringe out and discard the whole shot. I dont know about you but with what this stuff costs I'll stick myself again dull needle or not.
 
Crohn's Mom

Crohn's Mom

Moderator
LOL Aloy .. yes, my daughter and I laughed about that as well.

When she did her second set of loading doses, she didn't empty the first syringe all the way and didn't realize until we showed her after the needle was out. She was so excited that she got to inject 3 times instead of 2 ! LOL She's a weirdo that thinks the injections are the coolest thing ever ! ( of course..she's getting ready to start college and study pre med..that may explain it! :ylol:)

Best of luck to you with the Cimzia! Gab didn't have to taper off any other meds when she started as it was directly after her surgery and (all) of the current disease had been removed, so that's the only thing she's on. But they're trying the Top Down approach with her...cut it all out and bang it with the big guns before the CD comes back!
Hope it does wonders for you! There doesn't seem to be too many Cimzia'ers around yet :)
 
Aloysius M

Aloysius M

Well the after first dose action report:

I woke up this morning feeling like I was in a bar room fight last night. Every part of me was sore and achey. Just got on with the morning and tuffed it out and everything seems to be feeling better as the day goes on.
 
Crohn's Mom

Crohn's Mom

Moderator
That happened to my daughter after her 2nd set of injections. It didn't last long though, and it hasn't happened again so far.
Don't get discouraged ! :)
 
Aloysius M

Aloysius M

Oh I aint. Just told myself that there where no black and blue marks so I must of won, hahaha.

On top of that only had one poo today, but it was a half hour, so I'm happy with that trade off. Hopefully it stays that way but the true test will be once I'm completely off the pred and apriso.
 
T

ThanksP

My doc kept me on the Apriso the entire time I was on Cimzia. He said that it was a good maintenance drug and should stay on it. But the Pred, yeah, that had to go ASAP. Hated that stuff.

Hope the Cimzia works!
 
DCCrohns

DCCrohns

Hi All,

New to the Forum but happy to find others on Cimzia. I started a six weeks ago after being on Remicade for a year and a half (and developing enough of a consistent reaction that my doc wanted me to change).

So far, so good on Cimzia. I have fistulating Crohn's, so I'm currently combining biologics with phased surgeries that will hopefully finally rid me of these suckers. Any one else dealing with fistulas, as well?
 
Crohn's Mom

Crohn's Mom

Moderator
HI DC and welcome to the forum and to Cimzia :)
I hope it works well for you!
My daughter had multiple internal fistulas along with abscesses, but had surgery to remove them before starting Cimzia so unfortunately I have no idea if it works on healing them or not. Hopefully someone else will be along who will know better than I.
I wish you much success with your new treatment ! :)
 
M

mogulgrandma

Waiting insurance approval

i just had a TB test and am awaiting insurance company approval for Cimzia. I've been reading the "Cimzian's Club" to try and get my mind around all this. I'm scared - never having given myself injections before but after reading your threads I'm feeling a little better. I have UC but over the last year it has become one constant flare up. I hope it works as well for me as it seems to have worked for most of you. Is there any other UCer out there taking Cimzia? I await the verdict of the all knowing insurance company as to what they will cover.
 
Crohn's Mom

Crohn's Mom

Moderator
Hi mogulgrandma and welcome to the forum, and soon to Cimzia :)

I hope the insurance approves it for you and it has much success!
I'm not sure if there is anyone here with UC on Cimzia, but there is a separate sub-forum here for UC'ers :) Have a look around in there as well.

don't be scared of the injections. Your nurse will train you, and even do them for you the first time minimum. The syringes are "thick" and made so they are easy to hold, and inject. My daughter does them herself with no pain and no stinging what so ever. Of course, I must admit, she's weird and thinks they are the coolest thing ever ! LOL

Best of luck to you and again welcome :)
 
Aloysius M

Aloysius M

mogulgrandma said:
i just had a TB test and am awaiting insurance company approval for Cimzia. I've been reading the "Cimzian's Club" to try and get my mind around all this. I'm scared - never having given myself injections before but after reading your threads I'm feeling a little better. I have UC but over the last year it has become one constant flare up. I hope it works as well for me as it seems to have worked for most of you. Is there any other UCer out there taking Cimzia? I await the verdict of the all knowing insurance company as to what they will cover.
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I wouldn't worry to much about the injections. When you do get them make sure to let them warm up before using them and inject slow slow slow. Seems the stuff is really viscous and takes time to come out. Depending on your insurance the sticker shock may be worse than the actual shots themselves, and you might be interested in going to the pharma companies website and apply for there discount card. Being unemployed at the moment, due to this crohn's crap, the discount card was a god send. Still waiting for my next round of loading injections next week, but so far it does feel like it is making a difference in the quality of life. Good luck to you.
 
Aloysius M

Aloysius M

Well took the second round of loading doses this morning. Stuff does appear to be getting better. I am a little tired this afternoon but I did take care of all the yard work today. Will have to wait till tomorrow to see if I feel any different from the last time.
 
Aloysius M

Aloysius M

Next day after shots update:

Before I get to this morning; I want to say that last night was kind of strange. Occasionally after eating dinner I'll fall asleep like most people talk about after thanksgiving dinner, but last night it was just out of control. Ended up taking a 2 hour nap after dinner that was like being in a comatose. Made a couple cups of coffee after waking up and everything was back to normal. Now to this morning, I feel no different than any other day with disease. In other words I dont have any ache feelings or feel that I participated in a bar room fight last night which is good. On to the poo report. Well nothing out of the ordinary with that. No burning, pain, mucus, d, nothing, just about as normal bathroom visit as one could hope for. I sure hope it keeps going this way with no set backs. Thanks for listening everyone.
 
T

ThanksP

Aloysius M said:
Next day after shots update:

Before I get to this morning; I want to say that last night was kind of strange. Occasionally after eating dinner I'll fall asleep like most people talk about after thanksgiving dinner, but last night it was just out of control. Ended up taking a 2 hour nap after dinner that was like being in a comatose. Made a couple cups of coffee after waking up and everything was back to normal. Now to this morning, I feel no different than any other day with disease. In other words I dont have any ache feelings or feel that I participated in a bar room fight last night which is good. On to the poo report. Well nothing out of the ordinary with that. No burning, pain, mucus, d, nothing, just about as normal bathroom visit as one could hope for. I sure hope it keeps going this way with no set backs. Thanks for listening everyone.
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Good news! Hope it continues to work for ya!
 
Crohn's Mom

Crohn's Mom

Moderator
Add another person to the "hair loss on Cimzia club"!
Gab's hair is falling out by the handfuls this last week :(
She said it just started this last week, but just told me today because I noticed how thin her hair looks already.
I started giving her Biotin supplements today hoping it will help very quickly.
Does the Biotin shampoo help more? Or is it even worth getting that in addition to the supplements ? Anyone know ?

good grief...why can't these meds just make people healthy without all the ridiculous side effects ?
 
Aloysius M

Aloysius M

Sorry to hear about the hair loss, but I cant be of much help. Clipped mine all down to extra short so I dont worry about it anymore. What does, if anything, the doc say about it?

Cimzia update:

I'm quickly comming up to round three of loading doses and while not happy that I have to stick myself with a needle its better than the alternative. Anyway I ran out of apriso on sunday and still have not filled it due to cost, but dont think I'm going to unless I notice my symptoms worsen. This week has chugged right along with no problems like I was still on the apriso, and I'm finally down to only 10mg of pred right now so the transition to only cimzia is getting closer.

I have noticed that I'm getting some other symptoms not related to the desiese but think they may be worth mentioning. Now it could just be the pred, and a lot of people I know dont like it because it gives them anger issues, but I dont think the pred is giving me anger issues. At least it has never done so before but who the heck knows with all these darn side effects. Anyway I've become a very angry individual; no let me refrase that. I've always been an angry short tempered individual that does not tolerate bs, but I was always able to control it before. Now it seems that I just let it go and to hell with the consequences. It is kinda nice being able to completely command the attention of a room now, but it also reminds me of a chapter in Machiavelli's book The Prince. Oh well, I'm just rambling right now because of a headache. I'll post another update up for the next loading dose.
 
chrisnsteph1022

chrisnsteph1022

I did one shot two weeks ago and had two completely normal days (about a week after the shot). The rest of the days have been decent, but not great. I'm still experiencing some cramping off and on, nausea about once a day, and diarrhea 3-5 times a day. Not watery, but not formed. I'm due for another shot tonight and am hoping for more than 2 good days this round. It's not really bad enough to switch medications, but definitely not where I want to be, either. Can anything else be taken along with the Cimzia and Apriso to increase effectiveness, besides pred?
 
Aloysius M

Aloysius M

Instead of Cimzia and Apriso you could probably say that Cimzia and any "5-ASA Medication" could be used, but really no 5-ASA's have every done anything worthwhile for me so I would not be the best help in that matter. Now I may be biased but for my crohns prednisone is its kryptonite and makes me seriously consider just telling the doc to put me on it full time despite the side effects of long term use.
 
T

ThanksP

chrisnsteph1022 said:
I did one shot two weeks ago and had two completely normal days (about a week after the shot). The rest of the days have been decent, but not great. I'm still experiencing some cramping off and on, nausea about once a day, and diarrhea 3-5 times a day. Not watery, but not formed. I'm due for another shot tonight and am hoping for more than 2 good days this round. It's not really bad enough to switch medications, but definitely not where I want to be, either. Can anything else be taken along with the Cimzia and Apriso to increase effectiveness, besides pred?
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Yes. Either Imuran or 6MP. But hopefully you can get away without needing either.
 
Aloysius M

Aloysius M

Cimzia update 3:

Well I'm at the third loading dose of cimzia today with no added appendages starting to grow out of my person just in case anybody was wondering. Anyway I'm going into today feeling like crap. I ran out of apriso on monday and have noticed an increase in mucus over the week including the nasty just mucus poops along with some pretty stout bowell pain. I decided to finish the prescription of asachol I had prior to going on apriso till I can afford to refill the apriso prescription. Started that thursday and have noticed that the mucus is decreasing so that is a good thing. I cant remember but I also hit the point where I had to decrease my prednisone to 10mg this week sometime and think that may also be part of the tired feel like crap problem as well. Anyway I'm going to shoot up in the thigh today just because I dont want to do it in the stomach this go around and we will see how that goes as far as tenderness is concerned. I dont expect anything eventfull will happen but will let everybody know how it goes with an update sometime tomorrow. I will have to say though that this week has been one of the first weeks that I've had to hit up my prescription pain meds in awhile and really glad that I had them on hand.
 
M

metahi

Hello - it has been a while since I posted here - I have been on Cimzia since Dec 2009 - lately I have been having less efficacy and they have been doing a series of booster doses to get me back on track - those seem to work but then I get some sort of cold that seems to through everything out of sorts and I get back to increased bathroom trips.

So, what happens next? I am already doing 200mg every other week - do people ever bump up to 400mg every other week?

I have a call into my doctor but just wanted to see what others have added or done
 
T

ThanksP

Yes, they can bump you up to 400mg every other week. I tried it that way for three or four months but it didn't make a difference. My doc did say that there are no studies/trials showing efficacy over 400mg bimonthly. Are you taking it with 6mp or Imuran? That might be the next step too. It is supposed to help the Cimzia work better. Best of luck to you, hope you are able to find something that works.
 
Aloysius M

Aloysius M

Cimzia update 3 continued:

Well I got the third loading dose done and yesterday was a pretty exhausting day. More than likely it was due to having to take my cousin to the airport for here flight out of town or the other running around I did taking advantage of because the airport is completely on the other side of town. Anyway I did the shots in my leg this time and while the needle stick is nothing the injecting part is what gets you. That stuff burned pretty good and makes you inject it really slow.
 
Aloysius M

Aloysius M

Cimzia update 4:

I got the shots done the other day and there is really nothing out of the ordinary to report on today. For some reason I didn't get the tired feeling this time than the previous go arounds. It still sucks having to stick myself with the needle but thats just something I'm going to have to deal with. One thing I do want to report on is that this is about day 6 of 5mg of prednisone dosing down from the previous 10mg I've been on for the better part of a month. I have notice a rather disturbing increase in mucus and frequency of bowell movements almost bordering on me thinking I'm going to start a full blown flare again. I would think that if this Cimzia is doing anything you, or rather I, would at least see a lack of mucus production and no change in bowell movement frequency if this was doing something. I dont know and am holding my breath to see if this is just some fluke but am preparing for the worst to start over again should it turn that way.
 
T

taxdaycrohnie

slice said:
ThanksP, I was taught with the stomach. One time I tried the thigh and surprisingly it hurt much worse! Having said that, some of my injections don't hurt at all and others are pretty painful and I haven't figured out what causes what. I have to say though, it's never been as painful as it was in the thigh and my thighs have some meat on them. And yes, the abdomen is a bit easier to get to.
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Yes, I found the abdomen much easier. I am not toned by any stretch of the imagination, but the thigh seemed too tight for the injection. As hard as I pushed, I couldn't seem to get the needle in. The stomach works, but I get a strange circle around the injection site, where my skin looks bleached for a couple days. Does anyone else get that?
 
T

taxdaycrohnie

I'm losing my hair too. It started about 2 months into using the Cimzia. Just like after I had each of my 3 kiddos, I'm losing my hair in the same place. And my periods have come back, tho I have an IUD and didn't have them the last time. I thought it was a hormonal change to begin with. Hope the Biotin works, and Gab gets her hair back!
 
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T

ThanksP

taxdaycrohnie said:
Yes, I found the abdomen much easier. I am not toned by any stretch of the imagination, but the thigh seemed too tight for the injection. As hard as I pushed, I couldn't seem to get the needle in. The stomach works, but I get a strange circle around the injection site, where my skin looks bleached for a couple days. Does anyone else get that?
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Yep, it happened everytime after my injections. It's perfectly "normal" according to the manufacturer.
 
alexisreese

alexisreese

Just got my PPD placement test done today and all the hepatitis labs done today! Request to insurance should be sent off by Wednesday for Cimzia. I'm overly excited since my current meds aren't really doing the trick, I'm willing to give anything a try!
 
T

taxdaycrohnie

Wishing you luck with the Cimzia! It's not perfect, but I can walk, I can work, and I'm not in pain all the time. I saw results within 2 days. Hopefully you will be feeling great by the weekend!
 
Manzyb

Manzyb

I just took my first two shots of Cimzia today! So far, pretty good. I'm feeling pretty tired and achey, but nothing too bad. That could just be from having a horrible stomach day. No allergic reactions-I had a bad allergic reaction to Remicaid after taking it for 4 years, so that's always in the back of my mind.

I do have these two weird circles about a half dollar size that are raised around where I did the injections. They're a bit sore, but nothing to write home about. They're just funny looking.

Hope everyone is doing well!
 
C

Cornfieldgal

Sadie is adorable! Glad to hear your first two injections went well. I had my second set last week, so far so good! Hears hoping it puts us both into nice long remissions!
 
Manzyb

Manzyb

@Cornfieldgirl- are you feeling any better? I'm 6 days in, and I just can't tell a difference yet. I'm still having horrible stomach pain, nausea, vomting, diarrhea.. all the fun stuff!

When I took Humira I felt better immediately. Within the first day or two. Hopefully the next round of shots next Friday will do me good!
 
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