Cimzia advice please ...

[Rosie_rabbit]

Hi everyone, not been on in a while as it's been a roller coaster few months. Some of you may remember I was offered to take part in a drugs trial for a new biologic in February, unfortunately the criteria was set so high that I didn't make the trial.

I finally had a follow up appointment on Monday and my DAS has gone from 4.7 in February to 6.25 now. So, they've finally agreed for me to start biologics anyway and I'm due to start on cimzia as soon as healthcare at home deliver to me.

So, I have a few questions and was wondering if anyone can help please?

I also inject 20mg mtx on a Monday and I'm wondering what the best day is to inject the cimzia? I don't want to overload my liver, and I don't want to ruin my weekend.

I'm off work at the moment but on Monday they put me on 5mg of prednisalone which has really picked me up. I want to get back to work as soon as I can. Are there many side affects to get used to with cimzia? Just wonder if I'm best to wait until I'm established on it before I return to work? I've been off work since the beginning of February so another few weeks won't make a lot of difference.

I think the injections are click pens ...are these easy to use? My rheumy nurse didn't run through injecting with me and I'm not too sure whether I just work it out for myself or if someone should show me. I'm used to injecting my mtx but that's a straightforward injection.

Any other useful help, advice, experiences shared would be really appreciated. It's been a rough year so far and I'm very fed up with this horrible disease so really hoping this works for me. Thanks, Rosie x

[julie_warwick]

Hi Rosie , I am hoping to start on cimzia soon , have got my 2nd DAS score today and if it's still high , hopefully I will be put on it so I am interested in the answers you get. my nurse said they are pre filled syringes rather than pens , and I got the impression someone would teach me how , all new to me too , hope you get on ok and get some success , let me know how you get on x

[Rosie_rabbit in reply to julie_warwick]

Oh food luck today Julie, let us know how you get on and there's been some great replies Rx

[julie_warwick in reply to julie_warwick]

just got back from seeing the nurse , I have been put on cimzia , be a couple of weeks before I get the 1st dose if all goes to plan , don't know if I'm happy or terrified !! some very positive posts here , I daren't believe it'll work , fingers crossed for you too , inbox me whenever you like , it's nice to here from someone going through the same thing x

[Rosie_rabbit in reply to julie_warwick]

I'm so please for you Julie, yes I will stay and touch and let me know how your get on too xx

[claireyj]

Hiya ladies - I have been on Cimzia since Oct last year as Methx 20mg was not enough for me and after trying another couple of dmards and failing and constantly on steroids I was finally given the opportunity to have a biologic. Not too soon either, I was in all sorts of problems , terrible pain in feet, hips , wrists etc etc literally could hardly walk and at 43 was so upsetting for my kids and hubby . Anyway you have 2 double doses of Cimzia this is called your loading doses , a nurse usually comes from health care at home who you will be put in touch with and they help you with your injections (syringes) until your comfortable to do them on your own. (Don't worry it's fine ) ...After these loading doses you will inject every fortnight in your belly or thighs , alternating if possible and here's the good bit ...if you are anything like me you'll notice the difference after a couple of weeks yay ! I am 95% the woman I was , still have to listen to your body , pace and take care of yourself but it's been great ! Oh yeah and you keep it in the fridge and it's delivered to your house , don't worry you'll be told about all of this ! I've recently had a water infection so have had to come off of Cimzia and am now back on it with 15mg Methx weekly. Listen I'm fully aware that things can chance over night so I'm not speaking too soon but living for today it's fab and I swim at least 2 miles a week at my local pool and have managed to lose a stone ! There are people on here that sadly have had bad experiences with Cimzia but please please don't be put off by this as you only hear from the poor people who are having to try other meds ,the ones it's works for are too busy out n about , cycling , running marathons lol letc etc !! I know quite a few people who are doing great . I really hope this helps , I appreciate there are risks and you have to be aware of them and they are scarey , but quality of life is the key and if you are struggling like I was then I hope the Cimzia works wonders for you! .....Phewwww I hope I havnt gone on too much , but I understand how apprehensive you are probably feeling - Goodluck love Claire xx ps if and when you do start Cimzia and you're a bit worried about anything happy for you or Julie to inbox me .

[julie_warwick in reply to claireyj]

thank you Claire , that is the most positive , uplifting post I've seen in a long time ! as you say , we only tend to hear the bad stuff and makes it sound more common than it is , I can't wait to get started , lets hope for success , thank you for cheering me up x

[cathie in reply to claireyj]

I can believe you - I was on infliximab for many years and it was great. Not so without

[claireyj]

Oh yeah , sorry forgot this bit Rosie , Cimzia doesn't effect your liver like Methx there are no probs with alcohol etc if sensible , however if you are taking Methx then all the restrictions still apply -and regular blood tests - I inject Cimzia Monday mornings and take Methx before bed Wednesdays to sleep it off ....also you asked about side effects at the mo none from Cimzia at first though red and slightly puffy round injection site but after about 4 jabs stopped happening , body seems to get used to it ( but like I say appreciate this could change so not speaking too soon) my only side effect is from methx and always has been , upset tum so times and tired the day after taking - nothing major eh?! Worth it x

[Rosie_rabbit in reply to claireyj]

Oh that's fab Claire, just what I needed to hear. I'm taking prednisalone tabs until it gets started which have helped calm everything down enormously. Were you taking anything like this when you started? I'm not sure when I should stop them? I feel so much better on them, I'm not sure how I'll know if the cimzia is working if I'm still taking the preds!! Thanks Rx

[claireyj in reply to Rosie_rabbit]

I would speak to your rhumi team about when to stop them ...I was still under the influence of a steroid injection when I first took Cimzia , and with the steroid jabs they literally lasted me 5 weeks to the day it always worked out liked that so when I woke up that day if I had pain the Cimzia wasn't working and if I'd didn't it was working - guess what no pain it's such a lovely feeling , you'll wanna kiss the Cimzia box lol lol !!! Keep us updated !

[Rosie_rabbit in reply to claireyj]

Thanks for that Claire ..what is this no pain thing then, really looking forward to that although not half as much as a reduction in fatigue!!

I've had 4 steroid injections, like you, but they don't really help much now which I think is why they've put me on the oral ones. I'll have a chat with my GP next week when I see him and then ring my rheumy team too if he's not too sure. Thanks again and I'll definitely keep you posted xx

[cathie in reply to Rosie_rabbit]

How long overlap have they told you with pred after starting Cimiza?

[Rosie_rabbit in reply to cathie]

Hi Cathie, they didn't say, they just gave me the pred to help in the meantime so I need to get some clarification from them. Do you take cimzia or preds? X

[Scottishlad]

I would go along with everything Claireyj has said.

Don't be be put off when you see the syringes. The needle is very fine and you hardly feel a thing. Most of what you see is a plastic outer designed to make it easier to use. Unfortunately it does magnify the syringe. The amount you inject is only 1/5th of a teaspoon.

I take my MTX on Sunday and my Cimzia on Thursday. I find the injection works best for me in the belly as I got bit of a reaction when I tried the thigh and felt it was less effective. I think it was going into muscle there, I am slim and cycle so no spare skin there!! Some people freak out a bit with the idea of injecting into the belly area. The nurse will give you good support while you learn.

Hope this helps and that all goes well for you.

Cecil

[Rosie_rabbit in reply to Scottishlad]

Hi Cecil, thanks so much for that, I was really hoping to hear some good feedback about this. I'm aware that some people have had some nasty reactions to this drug but I think that's quite rare. I'm not worried about the injections really as I do already inject the mtx, just about bring sure I know how to work the click pens, but if a nurse comes and shows me that'll be fine.

I've plenty of spare skin around the thigh and tummy area haha!! Interesting what you say though about it not being as effective for you in the thigh. Hope it continues to work well for you.

Rx

[claireyj]

Rosie , Cecil has been on Cimzia longer than me and was really great when I started with advice ...

I think his best advice was to take the injection out of the fridge and leave it for about 10-15 mins or hold it for 5 mins if you're pushed for time so it warms slightly ...it really helps, you really don't feel anything then , the fluid goes in much easier . I also just inject in tummy just seems easier than legs , all sorts going on in thighs muscles etc etc !!

[Scottishlad]

I have the syringe out of the fridge for 30 mins. If the air bubble rises easily then it is fine.

Cecil

[Rosie_rabbit in reply to Scottishlad]

Thanks Cecil I'll try that and it sounds like your the King of Cimzia haha!! Xx

[Annielou]

Good luck with Cimzia - I have just injected my second double dose this morning and so far have had no problems or side effects since starting on it a fortnight ago. I definitely feel as though I've had more energy over the past week or so so feel quite positive it could make a difference. The injections are quite easy to do although the texture of the medicine is thicker than methotrexate so it is a little harder to push down on the syringe to release the liquid but really doesn't hurt.

[Rosie_rabbit in reply to Annielou]

Thank you I'm soooo looking forward to more energy I almost can't wait to get started xx

[stbernhard]

Hello Rosie, Go for it and if it works for you as it did for me and many others, I'll be very happy for you. With the help of CIMZIA I have been able to get my life back. All the very best and let us know how you get on.

[Rosie_rabbit in reply to stbernhard]

That's really good to hear thanks you ...long may it last for you. I hope it does as well for me xx

[Hidden]

Cimzia got my stubborn, aggressive RA into remission. Sadly I had unusual side effects and I'm now waiting to start humira. The pre filled syringes aren't that bad. It's thick medicine so it takes a wee while longer than MTX to inject but I got the hang of it really quickly.

I did have a rotten headache after the first few doses but it certainly wasn't bad enough to need to take a day off work. I injected MTX on a friday and cimzia on a Saturday and this was fine.

All the best of luck!

[Rosie_rabbit in reply to Hidden]

Do you know what, that's how I would describe my RA to as stubborn!! It just doesn't want to go away, so I'm really pleased it's worked for you. Also glad to hear that you can take you cimzia straight after your mtx too. Thanks xx

[samjam]

I am also on Cimzia. The deliveries are made from Healthcare at Home and they also send a Nurse who goes through procedures with you. I would suggest that you either wait to see what her advice is or contact your Rheumy Nurse. From memory you have to leave a gap between the two. Cimzia made a big difference to my RA. However, I seem to have developed a food intolerance, but consider it a low price to pay in the scheme of things.