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Concerns over Remicade/Humira/Cimzia

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Posted 9/11/2009 4:47 PM (GMT 0)
Hey all-

I have been dealing with Crohns for the last 12 years and have reached the point where it's time to turn the page to the next maintenance drug.....

I've been taking Entocort for the last year and although it has helped me for the most part it's not something that one would want to be on for an extended period of time. So the new doctor as well as the old doctor suggested that I try Humira. I have a few questions regarding this as well as how it compares to other similar long term treatment meds. I've heard the good side where it has the potential to put the Crohn's into remission for a good period of time which would make me extremely happy. I've also heard that it can have a positive effect on fistulas which also maybe be helpful to me.

This is something that I would of course be interested but the cons have me a bit hesitant.

Right now I have great insurance which is necessary since any of these treatments are extremely expensive. What happens if I lose my job or insurance??

I heard that once you start these treatments it is extremely important to adhere to the routine they require otherwise the results can be extremely detrimental and/or dangerous if you stop treatment.

I also hear that with Humira the treatment requires 3 shots to the gut a day or something to that effect. I definately don't like the idea that I'm sticking a needle in my stomach.....3x a day are you crazy?

I don't have a problem with hooking up to an IV every couple weeks and I think the Remicade and Cimzia are a bit more user friendly. Any thoughts?

Lastly I'm a bit concerned about the side effects one of which more then others. There has been an indication that there is a chance that these drugs can cause cancer. That scares the **** out of me. No pun intended.

Are those that are on these types of drugs concerned about this as well?

I heard the same about 6MP and that's another alternative.

If anyone can answer any of these questions and concerns it would be appreciated. I'm probably going to have to come to some sort of conclusion in the next few months and I don't like my options. I would love to find remission but I'm a bit freaked out on the process and the side effects.

Thank you!

JAB

Posted 9/11/2009 5:04 PM (GMT 0)
I've been on Remicade and Cimzia. Remicade is nice, but it is time-consuming. You have to take it to the hospital and wait for them to mix it. Then is takes a few hours to pump through you.

Cimzia is nice because the med comes to your house, the nurse comes to your house, you get two injections. (one in stomach and one in thigh, though you can get both in the thigh like I do...)

I did really well on the Remicade, and the Cimzia worked well for a little while. I can't really fault Cimzia though because my Crohn's was just getting to the point where surgery was needed. My doc said that no med at that point would have helped me. (I had considered switching back to Remicade...)

I've been concerned about cancer too, but a lot of the stuff I read dealt with adolescents who use the drug. My doc basically told me that if the med worked for me then it would decrease my chance of getting colon cancer. He said he felt that being on the medicine would be the best thing for my health. Lots of meds have side effects that rarely ever happen. We just have to pray for good health and good results. But let it be your decision. I needed to improve the quality of my life, so I am taking the risk. Good luck.
Posted 9/11/2009 10:04 PM (GMT 0)
Humira generally begins with a loading dose of 4 injections. Two weeks later, 2 injections are given. Then Humira is administered in one injection every other week. Following the prescribed routine is important but occasionally there may be a reason to delay an injection such as having a cold, infection, surgery, etc. Humira is then resumed when cleared by ones doctor.

Humira is expensive. For those having difficulty paying, Abbott has an assistance program.

If you google the name of each medication, you will find links to the site of the medications manufacturers. There you can learn the specifics of administration routines, side effects, etc. Most of this class of meds have similar side effects. Therefore, making a decision on which to go with might be based on insurance coverage, ease of administration, etc.
Posted 9/12/2009 2:36 AM (GMT 0)
You do not need a nurse for Cimzia anymore - they have prefilled syringes.

I've been on all 3. I prefer doing the injection myself - the Remicade worked fabulously but I gave up a day of work everytime I did it. It's such a waste of a day. With Humira and Cimzia, I inject at bedtime and am fine.

Cimzia is a loading dose of 2 syringes at week 0, 2, and 4 followed by 1 syringe either every 2 weeks or every 4 weeks (I believe the GI has control over dosage but those are the more typical timelines). I am on every 2 week. It honestly doesn't even hurt. I just do it in my thigh.

Humira also has a loading dose, mine was only 2 shots but others have received as much as 4 shots at once. Then, I did a syringe at home every other week and then it got bumped to every week. Humira does hurt more, the medication just burns, but it wasn't unbearable.

None of the medications are given daily (or 3x a day!!)


They all run risks... but so does having an out of control disease, or being on long term steroids. Remicade and Humira both gave me my life back when I was at a point of facing surgery or barely living. I am new to Cimzia but flaring and hope it is the same miracle drug Remicade and Humira were.

I never had side effects to Humira. None. Was on it 2.5 years.

I lost some hair on Remicade, nothing noticeable to anyone but myself, and after 2.5 years I did have a reaction to it and had to be pulled from it. I was in the hospital, though, so they were able to stop the reaction easily.

I have not had a side effect to the Cimzia yet.

All three drugs have patient assistance programs for people not covered under insurance and to help people with insurance pay their copay. I only paid $5 for a box of Humira under the assistance program. My copy was $40 so it saved me some.

Good luck!

Posted 9/12/2009 4:18 AM (GMT 0)
I too am afraid of the side effects, but I was at the point where I just wanted to feel better. I told my doc I was ready for the big guns. He said lets try something else first. Reduce my Asacol, quit Prottonix and start Questran. Well, my BM's have slowed to once per day so that is working for now. I am still ready for the heavy artillary when needed.
You need to get to the point of just wanting to feel good again. Then your ready for Humira, Remicade and Cimzia.
Every drug has side effects, look at Tylenol.
Posted 9/12/2009 10:51 AM (GMT 0)
I actually get my Cimzia from the VA and I have to drive up there to get it because of how expensive it is, they don't want anything to happen to it in the mail. I have to say I'm kind of glad because I can't imagine giving myself a shot...I'm too chicken. All three of the drugs have basically the same side effects so that isn't really a deciding factor. My GI started me on Remicade first but like some of the others have mentioned, it is time consuming. It takes about 3 hours to administer the meds through IV. I never had any side effects with the Remicade but it didn't seem to help at all after the first month. They decided to put me on Cimzia next and skip the Humira. I just received my first loading dose 2 weeks ago. The nurse said that most of the people they have on it right now start to see a difference after their second dose (so I am crossing my fingers) but for some who had really severe CD or who have had it for a long time, it took as long as 3 months to start seeing results. The only side effect I have had so far is some back pain for about 2 days after I got the shot in my sides.

I was really scared before I started the Remicade because of the potential side effects. You just have to think that the risk is pretty small and the meds could really improve your quality of life. Talk to your GI about your concerns, I did before I started the Remicade and it really made me feel a lot better.

Good luck!!!
Posted 9/13/2009 4:31 PM (GMT 0)
Aimee, when I was on the clinical trial for Cimzia, I was getting 400 mg every 2 weeks.  Once it hit the market, I was told by not only the doctors but the case manager at the Cimplicity program that you can only get it every 4 weeks.  Did you start out with every 4 weeks and then up it because it was wearing off too soon, or have you always been on every 2 weeks?  I don't understand because my docs (GI and rheumy both) tell me they can't get Humira approved for more than one shot every 2 weeks (but others on here get it every week) or Cimzia more than once every 4 weeks.  Are my docs just not willing to fight with insurance or something?  Thanks. 
Posted 9/14/2009 4:34 PM (GMT 0)
Thank you all for feedback on what you put up with in applying the medication as well as the pros and cons that are considered. I hear a common theme where the quality of life has taken a severe hit and you are willing to consider the negative aspects of the drug if it is able to help you find that quality of life again. I too want that quality of life and am tired of waking each day wondering whether I'm going to feel good or not.

Any other feedback is welcome. I really want to feel assured if I take this next step and those that have responded have helped me. Whether it's the fear of needles or the fear of side effects each of you has touched on it in someway and I appreciate it!

JAB :-)
Posted 9/15/2009 3:23 AM (GMT 0)

ZenaWP said...
Aimee, when I was on the clinical trial for Cimzia, I was getting 400 mg every 2 weeks.  Once it hit the market, I was told by not only the doctors but the case manager at the Cimplicity program that you can only get it every 4 weeks.  Did you start out with every 4 weeks and then up it because it was wearing off too soon, or have you always been on every 2 weeks?  I don't understand because my docs (GI and rheumy both) tell me they can't get Humira approved for more than one shot every 2 weeks (but others on here get it every week) or Cimzia more than once every 4 weeks.  Are my docs just not willing to fight with insurance or something?  Thanks. 

I just finished my loading dose over the weekend, and I called my nurse to confirm how often I'm supposed to be taking it now and she said 1 shot every 2 weeks. I've never even been on it every 4 weeks. That said, I have NOT received a shipment from the RX company yet for a "regular" dose so it'll be interesting to see what the pharmacy thinks I should be taking. The nurse could have the info wrong...?

Re: Humira ~ I was on it every 2 weeks for 2 years and my GI bumped it to weekly. As far as I know, the ins company didn't put up a fight when he changed the script as the next month I ordered, they sent me the new script. But maybe he had to prove to them the every 2 week wasn't working?

I'm not sure if that helps you are all ~  I have BCBS and they approved weekly Humira.

 

Posted 10/9/2009 6:19 PM (GMT 0)
Just a quick note:  When I saw my doctor last week, he said that in his opinion, the proper dosage for Humira to really work should be 80 mg weekly (two shots a week).  And I am more than willing to inject twice weekly (hell, if it would get me in remission, I would be willing to inject three times a day), but no insurance company will approve that high a dosage.  Appartently, the only dosage tested was 40 mg every other week and only for around three months (after which time a good deal of patients have a loss of effectiveness) and that's why it's hard to get approval for anything more than 40 mg weekly.
Posted 10/9/2009 7:39 PM (GMT 0)

Sarah_B said...
Appartently, the only dosage tested was 40 mg every other week and only for around three months (after which time a good deal of patients have a loss of effectiveness) and that's why it's hard to get approval for anything more than 40 mg weekly.

Actually, in the tests it took about 3 months to achieve remission, not to lose its effectiveness.
Posted 10/9/2009 8:27 PM (GMT 0)
I'm on the Cimzia trial and they're doing shots every 2 weeks for the first 10 weeks, then every 4 weeks thereafter.
Posted 10/10/2009 12:46 AM (GMT 0)
I just started Cimzia last week.  I did two injections.  Next week I do two more and the following week I do two more.

Then I go to every 4 weeks.  My GI doc said you can't get it any sooner.   I've already started feeling better just on the first

set. But I also have Crohn's very mild compared to most.  I'm sure everyone is different.

Posted 10/10/2009 1:52 AM (GMT 0)
will remicade (or the other meds) be effective enough to keep you working as opposed to entocort is the apparent question.

As I would not be so anxious to switch from the entocort. (and wonder if the doctor(s) or yourself actually initiated the suggestion for change). I however never tried the entocort, but mention this because if its effective like prednisone with less side effects, this entocort might be just what is required. To your question, I can only say I tried the remicade and was pretty far gone by then and would say it might get you through another period of time, that is... if you can maintain your weight. The plus on the remicade side is that the delivery, namely the fact that the remicade is in solution, means you get the added advantageous effect of hydration. just like IV (and if they had regimented IV saline administration for crohns I actually think that would work well). On the other hand, having any medication within reach has its immediate advantages (such as stockpiling) with remicade this is not so, so that sort of goes with the 'having job/insurance' issue). Perhaps legislation will help soon in this issue. The cancer issue requires a comparison research between the meds. sorry I don't have time to do this, but tend to agree with what has been posted, except for what is said about reduction in chances by taking the med, because I don't necessarily believe in the link between crohn's and cancer, (taken a drug for reducing the chances of getting cancer is not an arguement if the drug can itself cause cancer), but I know that was not your question.
Posted 10/10/2009 2:20 AM (GMT 0)
My husband last year, went from being normal, to being in the hospital with crohn's and c-diff, lost 45 lbs, developed drop foot from malnutrition and peroneal nerve injury, etc. And they put him on high dose steroids (120 mgs of solumedrol) to stop the crohn's once they discovered that he didn't just have a c-diff infection, and it did nothing. They gave the high dose steroids 10 days to make a difference . . . and nothing. He didn't have a reduction in pain, he didn't have a reduction in blood in stool, and he wasn't able to tolerate any food. It was absolutely horrid. As a last ditch effort before surgery, they tried remicade - the next day my husband said he was feeling better. Right after the second infusion, he was able to come home, and he was able to tolerate solid food. And since then, the crohn's has been under control. He's had some problems with c-diff coming back . . . but so far, knock on wood, his crohn's is ok.

I agonized over the possible remicade side effects, especially since his aunt died from multiple sclerosis. And I went through hell wondering if his drop foot was caused by MS caused by remicade . . . which thankfully it wasn't. But ultimately, so far, our game of roulette is paying off for my husband. We decided to accept the risks, we took the remicade, knowing that it could have life ending side effects . . . but our other choice was surgery - coming home with 2 stomas (an ileostomy, and a stoma for the remainder of his colon to weep into).

Remicade has given us a great past year, and I hope many more. We believe that quality of life is more important than quantity of life - and dealing with a bag would have impacted his quality of life, for the rest of his life. So, we decided to be brave, and take a gamble on remicade, and hope for the best. So far, it's panned out. And when we go to the infusion center and see the number of people getting infused, I think that for the majority of people, the gamble pays off.

As for insurance, yes, that is a concern. Thankfully in our situation, we are both employed, and so if he loses his insurance, I can just add him to mine, and it will cover all the treatment and infusions. Good insurance is a must for the biologics - it can empty your bank account if you don't.

With remicade, once you begin treatment, the recommend continuing with the maintenance therapy of infusion every 8 weeks. This is because remicade has mouse proteins, and your body will begin building antibodies to it, and you can have a severe reaction if you stop getting it and then try again, say a year later. I don't believe the other biologics carry the same risk . . . but I am not sure.

My husband has had good luck with the remicade. He goes every 8 weeks to the infusion center, they give him his pre-meds of tylenol, benedryl and iv solumedrol, and begin the infusion, which takes about 3 hours. He pretty much has to take the rest of the day off work, because he has flu like symptoms, with joint pain and fever for the rest of the day. But he starts to return to normal the day after. My husband has had no issues with any respiratory infections,etc. knock on wood. So, every 8 weeks, he has to take a sick day, but the rest of the time, he's completely normal.

I highly recommend Remicade - but of course that's only because so far, we haven't had any lingering adverse effects. But when it works for you, it really gives you your life back.

Hope our experience helps you make your decision.

PV
Posted 10/10/2009 2:51 AM (GMT 0)
You mentioned that 6-MP is also one of the possibilities. It won't take effect as quickly as the biologics (Remicade, Humira, Cimzia, etc.), you'd be looking at say about three months before it really kicked in. But if you're worried about side effects, the risk of infections and cancer is lower with 6-MP than the other drugs you are considering as it doesn't suppress your immune system as strongly. Also, starting with that would give you the option to moving to a biologic later if you needed it, but gives you the chance of managing with less aggressive treatment for the moment. Just an idea.
Posted 10/10/2009 3:55 AM (GMT 0)
Writer __"the risk of infections and cancer is lower with 6-MP than the other drugs you are considering " proof please. Consider that 6MP is immunosuppressant , you say "as strongly" not sure about that, and I would be more concerned with 6MP than remicade. 6MP is the more aggressive of the drugs, but the management part is correct.
Posted 10/10/2009 9:48 PM (GMT 0)
I've been on 6mp, Humira, and Remicade.  Yes, they all have side effects, but what drug doesn't? They are scary side effects, but if you are sick enough, you are willing to chance it. Sometimes it is six of one, half dozen of the other...

 

Anyway, 6mp worked for me but gave me recurrent kidney stones, so I got off that.

 

Remicade brought me out of my first (very awful) flare, and I am thankful for it...it stopped working for me after a little over a year. It was annoying to set aside 2 hours to get the infusion, but otherwise it was fine.

 

Humira worked for me for about a year as well. I was freaked out about giving myself shots but it really wasn't a big deal. I got used to it. It burns going in a little but you can control how fast you put it in.

Posted 10/10/2009 10:17 PM (GMT 0)
I am on remicade and I was so scared before I started but they check you regularly for everything.

And the scary part is not that scary when the remi starts to help :D then its more worth it.

Good luck.

I like remicade a lot, it took some time to work but now that its working I love it.

Good luck
Posted 10/10/2009 10:47 PM (GMT 0)
Aimee and LBJ, my doctor's assistant talked to the Cimzia rep when he came in their office this week and told them about me...that I was getting it bi-weekly during the clinical trial and that I knew it would wear off before the 4 weeks was up now that I am on it again.  The rep told her that if a patient needs an extra "boost" during the month, that the doctor could probably get away with giving one, if the patient was okay with this.  He didn't say anything about whether or not insurance would approve this (especially since it's not the doctor getting my Cimzia or giving me the shots anyway) and the way my doctor has been, she can't get anything approved in excess of the "normal" time frame.  Anyway, the rep told her that if you have a patient who is needing more than the normal 4 week injection on a normal basis then the Cimzia really isn't working for that patient anyway and they shouldn't stay on it.  That's very discouraging, seeing as how this is really my last resort right now. 
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