Struggling with swopping biologics

[Phoo2]

I'm new here and struggling with low mood due to chronic pain and inability to do anything. I was on Enbrel and it stopped working for me, they have changed me over to cimzia but I am waiting for wash out period. They only decided this 2 weeks ago but It's been 6 months now that I can't do anything, can't plan anything and haven't been able to work. It is getting me down!!!!

[Hidden]

I'm so sorry things are bad for you. All the hanging around and problems with drugs is terrible isn't it. It's a hard illness to come to terms with, and even harder when the drugs are ineffective, or cause horrible side effects.

Hopefully things will improve for you soon, and the right drug treatment is just around the corner. I have a clue how you might be feeling. I get so frustrated at not being able to do stuff. When I do have a good day I go nuts!!

Wishing you well.

[Amy_Lee]

Hi Phoo2,

I can feel how you feel over there. I too could not do anything for many months during my recovery process. I was very much better after 10 months of treatment though I was still not very stable when I walked. However it got better each day. So hang on there, when the right medication that work on your system, you will be better slowly.

Below link was my recovery process, I hope it can inspire you to fight the disease positively.

healthunlocked.com/ra-warri....

[Fra22-57]

I have tried 3 biologics which didn't work for me and the waiting in between is terrible so I can sympathise.Have you been offered steroid shot to keep you going as they do help.It should be 8 weeks for other drug to come out out of your system then you are assessed for new one which is another few weeks but 6mths sounds too long so I would get on at your specialist nurse and ask for things to be speeded up.

Wish you speedy well

[Phoo2 in reply to Fra22-57]

Oh no ! 3 biologics didn't work for you.....oh that sounds awful😥. Which ones did you go through and were you able to work whilst you tried each one?

It's been 6 months since I started flaring up again...but it has taken over a month each time to get my 'emergency ' appointment. The first one the hospital gave me a steroid injection which didn't do much but I was trying lots of alternative therapies and thought I could manage. When it was clear I couldn't it took another month and a half to get my next 'emergency' appointment and that's when they decided to switch my biologic......I am just waiting now...........

My sense of worth has gone down the pan as for weeks at a time I can barely get out of bed and do any thing useful so I think I am getting depressed..........probably unsurprisingly......there's only so much a person can take.....

[Eiram50 in reply to Fra22-57]

I'm reading these posts and remembering that the first biologic I had was humira but I don't remember "waiting" when It was changed and I began taking embrel. Is that a regular thing that there should be a period of time where you end one and begin another?

[Eiram50 in reply to Eiram50]

Sorry, that wasn't clear! I meant a period of time in between ending one biologic and beginning another.

[Fra22-57 in reply to Eiram50]

It was for me.told other had to be out of system before starting another.annoying but safe

[farm123]

Hang in there unfortunately it could take some time but hopefully you should come out the other side a different person. I had an issue a few years ago with medication not working any more and trying to find one to work was not an experience I would like to go through again - no mobility, not able to work, constant pain and every part of my body joining in. Now although I have my limitations and still taking regular pain killers I have a life again thanks to Abatacept (and a TKR). NRAS have a helpline if you need someone to talk to - I was lucky my mum was there for me and would ring most morning to see how I was. Farm

[Phoo2 in reply to farm123]

I'm sorry to hear that, how long were you unable to work??

I have been off work for almost 4 months now and feel guilty almost every day that I cant 'force' myself to go in.........I know it's impossible but the guilt still lingers..... I know it is a useless emotion but it's hard to ignore, especially my sister in law and mother in law both have ra and have both proudly told me that they have never missed a day off work!!!! Cheers !!!

I think their ra gets better upon movement whereas when I have a flare I have to rest, otherwise it's justs gets worse and worse.......even the smallest movement triggers it off again...

[farm123 in reply to Phoo2]

Too long so really hope you do not have to go down the same road. Enbrel stopped working and had 9 months on Humira which felt like I was going downhill all the time. Tried Rituximab then Tocilizuimab before Abatacept which finally really kicked in after 9 months. Probably overall a mix of 12 months being useless and 12 months just getting by. It did get to the stage that I did wonder whether I was going to get any better and did buy a mobility scooter to try and get some normality back. Anyway thanks to Abatacept and a TKR things are back much better now.

I got to the stage that a steroid injection in the bum would not do anything for me. A reducing dose of oral steroids did help but they are not keen to use this very often.

I get the movement thing - I gave up driving at times as it was too much and even travelling in another car was difficult at times and as for anyone touching me.

Do remember that everybody is different and there are some many variations of this disease. Hopefully one day they will be able to tell better which drug will work the best for which person so we don't have to use trial and error system which takes so loooonng.

[Fra22-57 in reply to Phoo2]

I had to gI've up work as a cook.don't know how I managed to keep going as was no kitchen assistant and had to wash all pots in nursing home.I couldn't even lift a pan now

[Phoo2 in reply to Fra22-57]

That's so difficult! What do you do now? (If anything?) the third of having to give up work makes me feel even more useless! Sorry .....

[Phoo2 in reply to Phoo2]

Sorry that's the thought of giving up work..

[Fra22-57 in reply to Phoo2]

Thankyou for your reply . I don't do anything ..well I wish I could . I am 58 so not retiring age and I always worked.Anything try n do with hands even peeling spuds am on agony and joints swell.This new neurological problem has put me in wheelchair and my body is always jerking.I see a Professor of neurology on Tues so hope he can help me.

Try and ignore your mother and sister in law . Their experience has been different to yours.Everybody's is not the same so don't take heart

[Hidden]

I'm sorry Phoo - The difficulty about this disease is that everyone is different, and what works for one might not for another. It's really hard, because to me it feels like trying to pin the tail on the donkey in a dark room with a blindfold on. You occasionally hit it, and sometimes you miss. I know it's hard to stay positive too because of all that, but here is hoping they get the right one for you soon...