So I am just wondering what’s the best anyone can expect to be on biologics? I am in my 30’s and started on Cimzia at Christmas time and I have seen a massive improvement. Not as tired and not as stiff. A lot less pain, although I am still walking up with pins and needles in my hands and they are very sore in the mornings. Generally this is the reason I wake up. It’s not every but most mornings, but when it is I am reduced to tears.
My question is I have generally seen what I would think was a 75% Improvement on my symptoms, which I am so pleased with. But should I hope for more? Maybe after giving Cimzia a good run, see about switching to a different biologic? What is everyone else experience?
I appreciate it’s all individual but just interested in others experiences.
Thanks
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Whezziewhoozie
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We can only tell you the results we each individually have experienced from any drug & it really is very different for everyone.
The people to ask are your rheumy team...they won’t think you are having a moan.....but they will know if changing your dose of Cimzia if even adding something will help with your symptoms.
With what you feel is a 75% improvement.....I would be very wary of asking to change a drug that is that successful ... a lot of people here would give their eye teeth to have that amount of success in a few months....many people have to wait years to get 75% improvement in their symptoms.....& sadly a few never do......so have that chat with you rheumy team.
I kept on asking my rheumy team whether this was as good as it gets, and gently pushing them to think about whether I was on the optimal treatment for me. (I also kept asking whether there was more I could do to help myself, and talking about what I needed to do physically in my life so they knew I wasn’t happy to be a couch dweller). I got to 95% normal.
I’m on my 4th one now toxilimunumb the other 3 worked for about 6 months then stopped working,i was on 20mgs off methotrexate with them but have come off it due to my liver and lungs being affected,I’m about 80%better but we’re all different and we have good and bad days
No I’m still having breathing problems and going for a scan this week,also have to get a ecg as they want to rule other things out,at least their being thorough xxx
I'm sorry to hear that. I hope things improve for you.
Good question I started entanercept in January and like you got so far but I’ve had MTX problems and the disease was bubbling away . I’ve just finished a short course of steroids which had made a big difference. I would like to be better than 75% no harm having a chat with your Rheumatologist maybe a tweak is all you need.
It's always worth asking your rheumy team if it can get any better. I feel with today's range of treatments that 'almost back to normal' is what to aim for. Don't put up with anything less at this stage - but also express your gratitude for the relief you have had so far.
I wish now that I had been more pro-active in my younger days when I tended to accept that the improvement was the best I could expect. I've had rheumatologists say that the disease isn't very well controlled and thought 'well why not?'
The question of how good is good enough is one I constantly ask myself too. Only you can decide what you are aiming for and what you are prepared to accept. I would definitely discuss with your Rheumatology team to see if further improvements are possible - nothing ventured, nothing gained.. !
I personally wouldn’t accept 75% improvement, I’m in my 30s too and have had about a 95% improvement with tocilizumab, you probably won’t get 100% but that’s my normal. I (normally) work full time as a teacher and go to the gym regularly. Are you on any other dmard as well as the biologic?
I have had cimzia, simponi and rituximab which worked for brief periods or not at all. Then came orencia which gave 75% relief but my rheumatologist (fantastic but clearly massively overstretched) was not happy as my joints were still being damaged. She thought she could do better. My ra was agressive - within 3 years of diagnosis i had rheumatoid nodules. I was put on tocilizumab which frankly has been life changing. I'd say that most days I'm 95% normal. I walk miles (I work part time) and am probably the most flexible lady in my Pilates classes of ladies of my age (59). I would say don't accept 75%relief, my feet are damaged through ra and I notice that my balance isn't as good as the others in my class because of this. My teacher is always encouraging me to keep at it as she's also a physiotherapist and says it's hugely important in preventing falls as we age. I do take great care of myself which is important, I eat well, my bmi is 22 and I rarely drink. I move a lot. Good luck.
Wholeheartedly agree Pilates is the way to go. Before lockdown I was receiving individual Pilates sessions with my physio (part of my RA team). In particular it was helping me strengthen my core to help with my RA. I’m 58 had RA for 23 years but after having a massive flare up 18 months ago I needed every support I could get. I look forward to my sessions restarting eventually
My teacher has done zoom Pilates and has restarted classes in her garden. As I am vulnerable I have my own mat and equipment right in the corner of her garden. Obviously weather dependent.
Hi, I started imraldi last October and it has been a life saver. My MTX was reduced to 6 weekly. This seems to be working well at the moment and I can enjoy exercise, no side effects also. I also Hv to take folic acid tablets 3 times per week 🙏
CIMZIA was the drug (with MTX ans Sulfasalazine) that enabled me to get back control over my life, to start to self manage, become more positive and exercise regularly. I am in remission and it's surely partly thanks to CIMZIA. I live an active live and through RA have become stronger, both physically and mentally. I hope it'll work this well for you.
That’s a very good question! I don’t know the answer but I do know how important it is to get involved in your treatment.
It’s important to be pro-active and feel you have some involvement in it all. I didn’t in the beginning and I had years of treatment that was not at all effective.
If you don’t ask, you don’t get, and whilst it’s great that you feel so much better it might be the case that your painful pins and needles in the mornings are a sign that the disease is still active.
Let your rheumy team know how you feel. Maybe they’ll add in another drug rather than change biologic, but the most important thing is to let them know exactly how you are. No harm in asking - we should all aim to be the best we can! X
You may have some permanent damage which won't go away (I know I have). Like you I have seen a BIG improvement and we must be grateful for that - and manage the rest with painkillers.
Thanks everyone. It’s tricky at the moment with Covid I have tried contacting my hospital a few time’s when things started to get back to some kind of normal as I did not want to bother them at the height. Unfortunately no ones comes back on email or phone. It was the same pre lockdown.
I know I am super lucky to have such an improvement I was just wondering what I should be aiming for and other people’s experiences, although do realise that it’s different for everyone.
I am also on sulfasalzine but still of child bearing age So methotrexate is not an option for me.
Unfortunately my next appointment is now October as I was supposed to have a six month review in August but that has been cancelled.
It’s great to know I should aim for more and will defo preserve in contacting the Rheumy team to see if I get anywhere
Thank you for all your replies.
My experience is some drugs work better than others. So many variables. My rheumy told me when I failed on Rituximab after 11 years the average length of time patients get out of a biologic is 4.5 years so I did well but it took me a while to get there. Best thing is to try keep positive.
When you go to clinic your rheumy will ask you on a scale of 0-100 how active you feel your disease is, how long your morning stiffness is and do your Disease Activity Score (DAS) then they will decide if your drug is working well enough.
I was on Tocilizumab (TCZ) last year and it worked a bit but not enough.
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