Enbrel, Humira or Cimzia ?

Dancing Girl

Hi

I have RA and yesterday found out I can be now be funded for the above drugs. Biologics right (please forgive me as I've not read up a great deal on the above)

Over the last 4/5 years I have taken MTX, Leflunamide, Plaquenil and Sulpha along with Diclofenac and co-codamol. Of those, MTX and Sulpha made me really nauseus.

My specialist nurse has asked me to read up on the above three then decide which one I'd like to try...HELP ?!!

Any advice would be greatly received although I appreciate we're all different.

Thank you in advance,

xxx

theresak

Hello there,

I `ve been on humira now for over eight years, but my rheumy decided to put me on it - it wasn`t a decision I had to make for myself. It`s been great while it lasted, and has only recently begun to work less well. I`m pretty sure my rheumy will switch me to another biologic next month, but she will decide which one. I`m pretty sure it`s going to be either Enbrel or Rituximab.


Good luck with your decision.

LignumVitae

I've never heard of somebody being given a choice - what a responsibility for you (although I suspect you won't ahve to make the decision alone). I have had Enbrel and Humira. Enbrel and I didn't get on on one level because I had significant injection site rashes, so it had to be stopped. It definitely did help with the joints although the day after the dose I often felt lousy (it was the reaction problem). Humira seems to work nicely for me and I like and loathe in equal measure that it is fortnightly - on the one hand, less fridge space taken up and less jabs, on the other I have to keep track of which fortnight I'm on (is it a jab or not week) - hardly a big deal though! It hasn't caused any reactions but I don't think Enbrel does in many people either.

As5567

I've taken all 3 medications and I'm currently on Cimzia.

I'm not sure if I'm 100% correct but I think Enbrel came out first, then Humira and recently Cimzia.

I took Enbrel when I was 13, it worked well for about 2 years and then stopped working. Gave me 0 side effects and I would personally rate it 9/10. Before taking Enbrel I spent almost 1 year in a continuous flare up where nothing except steroid infusions helped. Taking Enbrel at the time was like some sort of mirical, and back then due to my arthritis being in the early stages it really did feel like a cure for me and I got to enjoy 2 years almost fully pain free. The standard dose for Enbrel for me was 1x injection per week.

I took Humira for about 4 years in total, at first I was given the standard dose 1 injection every 2 weeks which didn't seem to last the full 2 weeks, my doctor then increased it to 1 injection per week and the medication worked rather well. I did get some headaches on injection day with the Humira but they would clear up with a good night sleep, the medication worked well for me but sadly after 4 years it's no longer effective.

I'm currently on Cimzia now, I'm still in the early days so don't have much details on how it's worked for me. So far it's ok but not fantastic, but it's still early days. I currently take cimzia 1 injection every 2 weeks

Deciding which medication is probably difficult and personally I'd ask for my doctors opinion which is best for you specifically as we're all different.

How are you with needles? Do you like to do it manually or do you prefer the auto inject pens? (I'm assuming they have shown you one) Enbrel is now only available in a pen and syringe format, Humira is also available in a pen and syringe format and Cimzia is only available in syringe format. When ordering the medication doctors and nurses often don't give you a choice and just order the pen, if you feel a syringe would suite you better then let them know.

All of the injections burn slightly while injecting, all 3 seem to be just as painful as each other but don't worry the pain is just uncomfortable for the duration of the injection and then quickly goes away, if you're researching on-line you may come across some people saying they're very painful, but that's often because they have not read the instructions correctly and injected the medication straight out of the fridge without giving it 30 minutes to reach room temperature.

I'm sorry to hear you've had a rough time trying other medications and suffered sickness. TNF drugs are usually very well tolerated and most people don't suffer nausea as often as something like Methotrexate.

I hope you're able to start treatment soon and you get a good response.

Dancing Girl

Thank you so much for the replies. I too am a bit taken aback today following on from yesterdays appointment as I just presumed they'd point me in the right direction as to what I was to take. The impression I got was that the nurse just thought they'd all equally have the same effect so let me choose for myself weighing up pro's/cons. My problem is I'm worrying incase I pick the 'wrong' one and have a reaction ! I'm going in on Monday morning for a TB test so maybe I can discuss anything further then.

Hearing such positive stories from your own experiences gives me some hope. To wake up in the morning feeling relatively normal would be amazing ! I can't thank you enough for sharing your own stories. x

Dancing Girl

As5567 wrote:

How are you with needles? Do you like to do it manually or do you prefer the auto inject pens? (I'm assuming they have shown you one) Enbrel is now only available in a pen and syringe format, Humira is also available in a pen and syringe format and Cimzia is only available in syringe format. When ordering the medication doctors and nurses often don't give you a choice and just order the pen, if you feel a syringe would suite you better then let them know.

I tried injecting MTX and although I didn't really like doing it it was a needs must situation so I am prepared to try although I like the idea of a pen better I think ?

Good luck with your Cimzia, I hope you benefit from it soon x

Dancing Girl

LignumVitae wrote:

I've never heard of somebody being given a choice - what a responsibility for you (although I suspect you won't ahve to make the decision alone). I have had Enbrel and Humira. Enbrel and I didn't get on on one level because I had significant injection site rashes, so it had to be stopped. It definitely did help with the joints although the day after the dose I often felt lousy (it was the reaction problem). Humira seems to work nicely for me and I like and loathe in equal measure that it is fortnightly - on the one hand, less fridge space taken up and less jabs, on the other I have to keep track of which fortnight I'm on (is it a jab or not week) - hardly a big deal though! It hasn't caused any reactions but I don't think Enbrel does in many people either.

Sorry to hear the Enbrel gave you rashes, that's a shame as you felt it helped your joints. I'm glad the Humira is working nicely for you and I like the idea of a fortnightly injection. x

Dancing Girl

theresak wrote:

Hello there,

I `ve been on humira now for over eight years, but my rheumy decided to put me on it - it wasn`t a decision I had to make for myself. It`s been great while it lasted, and has only recently begun to work less well. I`m pretty sure my rheumy will switch me to another biologic next month, but she will decide which one. I`m pretty sure it`s going to be either Enbrel or Rituximab.


Good luck with your decision.

Wow, 8 years is an amazing length of time for your medicine to work, sorry to hear it's not working so well now. Frustrating. Good luck with switching over.

dreamdaisy

I was given choices until I ran out of options. What swayed it for me was the ease of administration. Enbrel did nothing to improve my PsA, I haven't tried cimzia and wont' because I'm on my final anti TNF which is humira. I've been taking it for the past eight years, I know it's working because my bloods are lovely but I no longer gain any physical benefit (initially I had about a week of better mobility, then that dropped to a few days, now it's none). The main thing is that disease activity is subdued and that has to be a good thing.

If you opt for humira then I advise you remove it from the fridge for at least twenty minutes before injecting so it warms through a little - this makes it a little more pleasant an experience. DD

As5567

Dancing Girl wrote:

As5567 wrote:

How are you with needles? Do you like to do it manually or do you prefer the auto inject pens? (I'm assuming they have shown you one) Enbrel is now only available in a pen and syringe format, Humira is also available in a pen and syringe format and Cimzia is only available in syringe format. When ordering the medication doctors and nurses often don't give you a choice and just order the pen, if you feel a syringe would suite you better then let them know.

I tried injecting MTX and although I didn't really like doing it it was a needs must situation so I am prepared to try although I like the idea of a pen better I think ?

I think most people do prefer the pen version as they don't have to deal with the needle and they're easier to use. You simply press the button and let it do it's thing. I'm sure the nurses will show you how it all works and go over it with you, also don't be afraid to ask to see a sample of each injection. They should have demo pens that are shown to patients and used for training.
Good luck with your Cimzia, I hope you benefit from it soon x

anniek

i was on enbrel for 8 years worked great then switched to Cimzia that worked well for two years switching to infusion in next couple of weeks ,enbrel is weekly injection cimzia fortnightly ,good luck and hope it works well for you .

lindalegs

Hi Dancing Girl,

I'm an Enbrel lass and have been injecting since 2011. For me it's the first bio-drug I've tried and I think its wonderful. I use the pen and would struggle sticking a needle in myself that I can actually see going in :shock:

I was given a choice of this or Humira but chose Enbrel because with Humira I was told I would have to go to hospital fortnightly for an infusion. In saying that things have probably changed now.

Whatever your choice please let us know how you go on.

Luv,

Dancing Girl

Hi all,

Just an update with where things are at. All of my tests have came back ok so I'm ready to go. I've decided to give Enbrel a try after lots of reading up. I kind of gave up looking over and over the information sheets in the end as I was starting to worry myself to death looking at side effects. I'm now at the conclusion that I'll give it a try, if it works it works and if it doesn't then maybe there'll be something else I try instead. I can't actually feel any worse than I do at the moment, joint wise or fluey/tired wise.

I'm now waiting for the nurse to ring me with a date to call out to my house to get me started so i shall keep you posted with how things go, fingers crossed X

Lindalegs - your post is reassuring to me and I hope I am the same.

Anniek - yours too, good luck with your infusions.

Dreamdaisy - sorry to hear that you're not feeling any benefit from the Humira now. Good that your disease activity is down but I hope you too can get something sorted to help you feel better in yourself.

xxxx

toady

All I can add is that I was also given the full choice of anti-tnf's when I started, I opted for Enbrel because the side-effect list seemed to be much better plus it's out of your system in less time. I had no side-effects whatsoever on it & it worked brilliantly to start with but less well over time very gradually and after 4 years I'm back to square one & scary leaflet time again myself. Very good luck with it. x

lindalegs

Hi again Dancing Girl,

I'm glad you've made your decision and you're so right in thinking that you can't feel any worse than you do now. I think you also have to bear in mind that RA is a systemic disease and that can affect other things in our bodies we can't see happening, it just manifests itself in the joints. Therefore the side effects of any drug we might take are probably less than what could be going on anyway due to the RA. (I don't say that to scare anyone as with all diseases they come in a range of severity. My RA is at the high end and is extremely aggressive and destructive therefore, for me, having bio meds is a no brainer )

Since injecting Enbrel I've discovered energy again and take pleasure even in the smallest chore because I don't hurt like I once did. I still have irreparable damage done to my joints but I can live with that as I know my own boundaries.

As you're early days (years) with your RA your bio medication will slow down or even stop the destructive damage to your joints and you won't be faced with the problems we veterans have :roll:

I will be really interested to read how you get on so please do let us know.

Love and good luck,