Biological meds

Been on cimzia had a bad time after ten weeks taken off it. While on it lost the use of my right arm possibly will have to have surgery. Went through ten weeks of hell. Now they want to try me on embrel I'm so scared, what if I end of not being able to use mty left arm at 55 I will be doomed. Any advise if I turn it down they will thing I'm not trying. While on cimzia crp double to 28 and and inflammation went up to 90 . I'm just so scared to try again.

20 Replies

  • It's so Scarry I agree with you I always ask for time to think about things so I can come to terms with the changes I am really against these drugs but people keep telling me the work but not for me so far hope you find the answer soon

  • I have been on enbrel for a year now and must say I haven't had any adverse symtons. I inject myself every Sunday and feel the benefit --why not give it a try, I felt the benefit after 4 injections but the injection hurts a bit so I do have to grit my teeth before I do it!

  • I have got some anaesthetic cream from my drs I put it on 40 - 50 mins before I inject and don't feel a thing - try it its called emla x

  • Thanks for the tip about the cream. Sorry I,be been slow answering but my husband had a knee replacement a month ago and I am slowing down in my responses to nearly a stop think I need a rest in bed but just have to keep going at the moment .Happy Christmas everrybody

  • Hope you manage to have a rest over the xmas holidays and your husband gets ' going' again soon. Take care pain free xmas to you both xxx

  • Just to say I've been on Enbrel for a number of years. Just to say if you make sure the syringe is warmed properly it won't sting as bad. I make sure it's well warmed up for at least 30mins next to my body ( under my boob ) and eh Ho no stinging. Merry sting free Christmas xx

  • oh so that is where i have been going wrong i hate hate hate fridays with a vengence as this is when i have to do my enbrel injection yer i leave it on clean cloth on table in kitchen for 30 mins then get ready with gritted teeth as i know what is to come it hurts so bad when the med is entering my body through the pen seyringe i even started to get my grown up daughter to come do this injectable into my leg for me and i have to turn away so i cant see it being done as few weeks ago i went to do this injection and as i clicked it i pulled it away from my leg with the med squirting all over the kitchen oh dear im so bad so now next friday i live in hope if i put the pen injection under my boob then hope the hurt will not be such a pain thanks cagsie

  • just get a tube of local anaesthetic cream off the dr put it on for 30 - 40 mins and you wont feel the needle or any stinging easy xx

  • do you feel ill enough to want to try another thing.? sometimes you will try anything to feel better. are you at that point? you will be monitored if you start Enbrel. it didn't do much for me, and I had to come off it because of big bruising on injection sight.

  • I was at that point of trying anything to feel better when I tried Cimza.but I can say hand on heart that was the worst medication for me. I am on methotrexate and heart medication. I have over thirteen joints effected with active arthritis . I want to try it but fear is winning. It took a few months for cimzia to come out the system in that time I got a chest infection on top of every thing else. But thank you for your replys.

  • Sounds very scary. I have been on CIMZIA for almost five months with methotrexate and I am still waiting for good results. I haven't had side effects like you describe. I have been looking into the next options if this TNF inhibitor CIMZIA doesn't work and apparently There is a new biologic medication out which targets different cells (enzymes) called Janus kinase (JAK). If the TNF inhibitor doesn't work then my rheumatologist is talking about trying Xeljanz (Tofacitinib) which is a JAK inhibitor.

    I think it is important to ask about all the options & which one best fits your case and why. My understanding is that if there are side effects like neurological ones, that if you stop the medication these can be reversed..... Can't imagine having to face surgery for a side effect from this medication and not the disease it was supposed to be helping.

    Take care. Doreen

  • Jayden trust me I went through the same Cimzia made me really ill. But I have had 3 other biologicals and have been fine. The only reason I had to give up the first two was they were not strong enough and I could no longer take methotrexate. So now I take toczilimab and I have none of those side effects. The decision is yours it's your body. Explain to your Rehumy your concerns they will understand. Always remember your in control. But I promise all biologics are not the same.

    Good luck


  • Hi

    Just wondered if you have considered calling the NRAS helpline to have a chat about your concerns 0800 298 7650 or possibly we could arrange for you to speak to one of our telephone volunteers who has taken or is currently taking Enbrel?

  • I have been on enbrel for 11 years for rheumatoid arthritis with no complications, and it saved me from a wheelchair as my disease had progressed to that point with other medications. When you have any infections, you have to cease for a while. It doesn't take long to self inject (once weekly).

  • I know it's scary but you have to weigh that against possible damage to joints. I had 10 years on etanercept/Enbrel with no side effects.

  • Thank you all. Yes I think I just had very bad time with Cimzia, and carried on until they stopped it. I think because my crp doubled and esr went up to 90 that joint inflammation increased.and not being able to use my right arm. Just got to me I'm sure as my pain increases I will have to give it a go. But thank you all for the replys.

  • im rather like junechurch i got diagnosed with ra near on 3 years ago its taken all this time of trying to use me as a try this try that person im at the point now where im thinking are any of these meds actually slowing my ra down enough to be putting up with all the awful side affects im getting. yes i am on methetrexate self pen injection and also they put me on cimzia after several weeks i phoned the rhumatolagist and made appointment as i needed to come off cimzia i was getting crippling headaches and feeling sick all of the time i gave it plenty of time to try see if side effects would ease but would not its like a struggle some of the time to get the rhumatolagist to see what i want and to stop them from telling me what is going to happen iv not got to the understanding with them im not gonna be put on any new meds until they give me time to read up about them and have time to make my mind up any way after comming off cimzia i was put on embrel injectable along with methetrexate and all the cocktail of tablets im taking i was on the embrel for near on 18 months and no problems and mostly i was copeing not so bad apart from the viruses i kept on getting which laid me up for long periods of time but then in may this year 2015 my blood test results came bk as low white cell blood count and was told come off all injectables until further notice i was told to have blood test every week until i was told blood test is fine and go bk on meds few weeks later then a week or two later oh dear phone call come off injectables blood test showing low white blood cell count and a week or so later ok you can go bk on the meds but get new perscription of a lower does of methetrexate it carried on and on and they lowered my methetrexate twice and now its december 2015 and all seems bk to normal but finding im really emotional and cry a lot and cant seem to deal with stuff in life like i used to i used to be a strong willed person now im loosing my spirit its so horrible iv always been the one holding everyone up and now i need someone to help me but no one can see i need help even when iv tried telling them they think its for a few days but this goes on and on iv been to see gp and she tried put me on anti depresents what is it with everything right now I DONT WANT MORE DRUGS TO TAKE i want someone to talk to but hey im sorry for my ranting iv just reread what iv writen im supposed to be replying to your post lol but basicly yer embreal seems to work

  • You can talk to me any time coffeepot222 yes it is very hard because no one unite understand, what your going through and each medication, comes with its own side effects. Poor you sounds like you also have been going through hard times with the stoping and starting of medication. Yes it does make you feel down but like you I don't think anti depressant are the answer your right someone just to listen and try to understand would be nice. Anyway I hope you feel better and any time you want to chat feel free.

  • I inject Enbrel and I take it out of the fridge at least an hour before I inject. I use a pre filled syringe, not the pen so I have more control over it and take it slowly. I use to inject in my leg but changed to doing it in my tum earlier this year and I have found I to be better. Sometimes I don't feel a thing, another time it may sting a little while I inject it. I just keep saying to myself.....stop being a wimp it will be over in a few seconds.

    Not sure about what Cagsie said about putting under her boob for 30 mins before she injects it. It is not suppose to go above , 25 degrees which is a lot less than body temperature. Not sure, just my opinion here.

    I know its very scary starting a new drug, wondering about side effects, especially when you've had a bad reaction to one. Can honestly say I haven't had any with Enbrel. It worked straight away and I am still nearly three years later in remission.

  • Hi Coffeepot I think everyone on here will understand your feelings. Many of us went from being " normal " human beings to someone with excruciating pain, fatigue but mostly a total lack of control over our own bodies. unless you have this disease you can't understand it. I would never have believed you could walk normally one minute then try to stand and find excruciating pain that has appeared in you foot and literally stops you walking. But then your family see you stand 4 hours later and walk as normal. I used to see the look on their faces. Or the skin on the back of your hand go from normal to a massive looking swelling in an hour. But they have seen the distruction this disease has caused to my body over the years. My husband now has arthritis in his shoulder. He said last week I cannot believe you have managed all these years with pain like this in multiple joints. We are here if you want to rant. We all understand so rant away.


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