Anyone here on Cimzia?

Bones, joints and muscles
1

Saw my Rheumy last week for my regular follow up appointment and she was adamant that I get on a biologic and told me I was going to have joint damage if I didn't. Currently I take 20mg of Leflunomide daily along with 1mg folic acid and a myriad of vitamin supplements.

She wants me to try Cimzia. Has anyone here been on this drug? From what I've read about it, it sounds like it actually helps with the fatigue which would be awesome---however, it also states that it can reignite past viral infections. That's scary!!

She was already upset with me because I told her I didn't want to go on a biologic due to working in a hosptial and being around sick people. I talk to RA patients daily (I register outpatients at a hospital) and they all have told me that the biologics work for the pain, but they end up sick a lot. I tried to let my Rheumy know that not being sick is the ONE thing I have that's good. I never get sick. I don't want to trade pain for sick. She assured me that it's a very small percentage of people who react that way, but not from the conversations I've had.

Any information you can give me on Cimzia would be much appreciated. Thanks!!

 

2

Are these genuine intuitive feelings you're having about this drug? Or just fear instilled in you by what you're reading on the net?

I do not know this specific biologics, nor have I heard of it.

But if you're in the UK and being offered biologics on the NHS, then you're a lucky trucker, in my book.

I have used both Actemra and Rituximab with some small side effects but great long-term results. I have not been more sick than I am usually.

The biolgoics are a highly sophisticated, very expensive, frontline drug, but like all new drugs, there is still a long way to go to find one that works for everyone all the time.

Your suppressed immune system puts you at a higher risk of infection, it's true, but only for the first week or two. And the changes to your condition can be huge and long-lasting.

Keep in mind that all the biologics work slightly differently and each one affects each person differently, sometimes even from one infusion to the one that follows.

If you have reason to believe your rheumy has a vested interest in your taking this specific drug, then you are right to be alarmed.

Otherwise, if the fatigue and pain are getting too much, go with it.

If not, wait.

Joint damage, however, is always going to be a danger, because I assume you want to keep off methotrexate and prednisolone too? – far more servere drugs in my book.

3

Hello Light,

I have been tentative about taking the biologics from the get-go. I talk to patients all of the time who have RA and take these drugs and not one of them has told me that they DON'T get sick more often. Every single one of them tells me that they are sick all of the time. 

Some of them say the drug helps their RA, others say they worked for awhile and then stopped. And some say they don't feel they do anything at all. But the one thing they ALL say is that their immune systems went way down and they get every cold and flu that goes around.

I did go out and look into Cimzia both on their own website and other forums. It sounds like a very strong drug. I am hesitant to get on a drug that can reignite viral infections. I had adult chicken pox 3 years ago and it was the sickest I've ever been in my life; I also believe it was what triggered my RA. It was just after that that I started having symptoms. 

I also had a past infection of Hep B that I didn't even know about until I tried to donate blood almost 30 years ago. I don't have it now and I cannot give it to anyone, but I do have the antibodies. That scares me with this drug. I intend on talking to my Rheumy about that. And it even states on their website to make sure and let your doctor know if you have or have had hep b.

It just seems that ALL of these RA drugs have so many side effects and dangers to them. I would love to see a drug come out that works without harming other parts of our bodies. 

And by the way, I'm in the U.S., not the UK. I can get on this drug for no cost using a special program, but I'm really feeling like I don't want to start on the biologics. My Rheumy is getting upset with me and says it's that or get joint damage. I don't think it has to be black and white. I'd love to see some compassion and other ideas to deal with the disease instead of just shoving meds at me all of the time. 

I was on MTX and hated it. It made me feel more pain and made me sick to my stomach all day. I also refuse to use steroids like prednisone. She knows I won't use that so she gave up on trying to get me to take an injection finally. I'm not trying to be difficult, I'd just like some other options and options that don't always have severe warnings attached to them that include death!  

 

4

OK. Well clearly you know what you want and it does sound as if your rheumy might getting some perks by getting you onto this program.... So you have decided.

And hep B is not a nice item to be hefting around!

Look up Dr Brown's theory and see if that's more attractive to you.

I wish you well whatever direction you take.

5

Hi

i m not on Cimzia but am taking Rituximab.

But I thought I d look it up on the NRAS website.

One of the advantages is that you can have it on its own and not with methotrexate.

The website said only a minority get more infections than they would have done if they hadn't been taking it and a small proportion  have infections that mean they are hospitalised.

it occurred to me that working in a hospital ,it's that small minority you would have talked to and given you that bad impression of biologics.

i m just putting it out there as joint destruction is pretty serious and is the option you are choosing if you don't have some kind of immune suppressing medication.

I have not had any infection since taking Rituximab last May- hoping that will last- that s the trouble, you don't know what your own body s response will be until you try.........hope you find your own pathway through it all.

kind regards

6

Hi Rowbirdie. Yes, I looked it up as well on the Cimzia website and what I liked about it was that people said they really felt the fatigue go away which made me more positive towards it. It's the major side effect of reintroducing viral infections that worries me. I have antibodies of Hep B in my system. I also just had adult chicken pox 3 years ago that I had so badly I thought I'd die. Cimzia can reignite these viral infections and I have zero desire for even a chance at that. My Rheumy is even backing down on this medication for me now. 

I know I need to have something more than the Leflunomide, but I want to be very careful about what I take. I'm not just going to go on whatever the doc says to go on because here in the States, the doctors don't look at your history in your chart. You have to be your own best doctor to make sure things don't go bad. Thanks for your input!!

7

Just joined the forum and spotted your discussion. I have been on Cimzia for 2 and a half years.  When I first started the drug, it had a remarkable effect immediately.  I am not exaggerating when I say that it gave me my life back!  I have had RA for over 25 years since I was just 20 years old.  Methotrexate never worked for me.  During the time I have been on Cimzia, I have had pneumonia.  It started as a chest infection and just got worse and worse until I ended up in hospital with pneumonia.  Obviously I had to stop Cimzia whilst I was poorly.  I was off work for 4 weeks in total.  I have just received some advice to suggest I should have a vaccination to reduce my risk ongoingly.  Apart from that, I have not had any other illnesses.  My husband, who does not have RA, catches more colds and coughs than I do.  I also work in school so I am coughed on all day everyday!!  When I weigh up the pros and cons I feel I have to stay on it for now, though I hate the thought of all the potential side effects.  I hope this is a sort of positive experience! 

8

I started loading dose of Cimzia 3 weeks ago. Felt fine for a few days the developed GA issues. Was due to do second loading dose this Wednesday but ended up having full blown flu followed by chest and throat infraction. Honestly never been so ill in my life - temp so high hubby said I was delirious at times. GP had to do house visit and straight onto antibiotics - all been a little bit scary to be honest. In fairness my youngest child had croup so wondering what germs he lovingly passed onto me. On hold now for two weeks and then straight to second loading dose but am now concerned that this may happen again and weighing up what is worse RA symptoms or infections ?????

9

Sorry esther! I just saw this reply. Thank you for letting me know of your experience. I did opt to not go on the Cimzia. For now, I'm sticking with my DMARD medication of Leflunomide. I had a horrible flare up last month that lasted 3 weeks and I started wondering if one of the biologics would be something I should try, but it went away and I've been OK since. My biggest fear is that I had a case of Hepatitis when I was a teenager and it states on the Cimzia website that you should not take it if you've had any type of Hepatitis because it can cause a recurrence. That was scary to see!!

10

Hello skhavis! Thank you for your response. My biggest fear with ALL of the biologics is these horrible side effects of infection and illness. I do OK on my DMARD medication for now and that's what I'm going to stick with, although I know my Rheumatologist is not happy about that. I am finally getting health insurance on April 1st and I know she's going to really push for me to get on Humira or Enbrel and I just don't want to start those drugs at this time. I just wish they'd find a darn cure for RA and we wouldn't have to worry about it at all!