I'm on triple ra meds currently but ra nurses leaning me towards biologics. Have been given a raft of leaflets of different types as if I'm supposed to randomly choose including jaks!
As I'm led to believe ra damage is irreversible ie.can I play tennis again with swollen knuckles or walk properly without hobbling or limping with what feels like a sprained ankle.Does remission really exist for one to return as was!?
Any wisdom out there as to own experience of return to some sort of normality after biologics/jaks would be welcomed,thanks.
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I was hardly able to walk and could barely lift a mug at my worst. A combination of methotrexate and adalimumab has worked for me since 2006. I remember my consultant saying to me, " I will get you playing tennis again". He did, and also got me skiing! I do have some joint damage as it took a year to be offered biologics. It required an appeal to the hospital trust for special funding in those days. I also had no choice as there were only three approved in the country and the hospital just told me which one I was being offered. Hope it works out for you.
My understanding is that damage is irreversible, but swelling and pain is not necessarily permanent damage. In active disease, it’s the inflammation that causes the pain and swelling, but permanent joint damage occurs when that inflammation goes unchecked i.e. untreated. For some people, that can happen quite quickly, for others it’s a very slow process. I had a single flare of psoriatic arthritis in my little finger that finally got me diagnosed after 20 years, that joint became deformed within just 4 months. I’ve had recurrent flares in other joints for decades, but no permanent deformity as yet. Remission is possible, but the only way to know what that’s going to look like for each individual is to achieve it and see. I know that even when I do finally get my condition under control, I’ll still have pain and difficulty because I’ve got permanent damage and osteoarthritis in some joints as a result. However, as potatos has commented is the case for them, someone else might achieve a normal (or almost normal) day to day standard of living including exercise and sport, even with some degree of permanent damage.
I hate this idea of handing a patient leaflets without any kind of guidance and saying pick one. Don’t be afraid to say to the team you have no idea how you’re supposed to choose and ask them for guidance and recommendations. I was given a choice in the DMARDs I was taking, and what to add in next, but my consultant made the call on which biologic would be appropriate, although there are less options licensed for PsA compared to RA. Makes the decision a bit easier.
Unfortunately, that’s true of all meds for RD. At this stage we have no idea why one drug will work brilliantly for one person and do nothing at all for someone else. Life would be a lot easier if we did! I’ve been diagnosed for two years and, unfortunately, have yet to find anything that works. I was on dual therapy with mtx and leflunomide, then imraldi (adalimumab) and lef after liver probs meant I couldn’t add in sulfa and had to stop all DMARDs for 6 months. I’m due to start Benepali (etanercept) tomorrow. I’ve said before that picking a med could be done via a flip of a coin, in part because if the one you pick doesn’t work, you’ll still get to try the one you didn’t in due course.
I think once damage is done it's done. That said, it doesn't mean you have to be in pain or immobile. I tried all the dmards, benepali and steroids. None of those did much, then I was given Imraldi to try (wasn't given a choice) and thankfully things have improved significantly.
As the other’s have said what remission looks like is different for each individual that being said some of us do achieve a normal life using biologics. I wasn’t given a choice and started on Enbrel (although now it would be benapali), which worked well for a couple of years, switched to humira which worked for about four years. Both of these are anti tnf treatments. When the humira stopped working I was changed to tocilizumab which has been my miracle drug. It literally started working 24 hours after my first injection and seven years later I am still in remission. I work full time as a primary school teacher and work out at the gym three times a week. Toc is an il6 inhibitor and works on the protein that causes the inflammation in the joints. I’m not recommending any of these as I am not a doctor but I just wanted to share a success story.
Tocilizumab changed my life. My son used to have to help me get up from the sofa- I am now more active than when I was 20 (I'm 61 diagnosed at 50). Be warned though - I tried 4 other biologics that didn't work before tocilizumab.
Im not sure if I have some minimal permanent damage in my ankles or if they are just weak and need the muscle building up more - I don’t have constant pain but they start to ache very quickly and feel slightly unstable unless the ground I’m walking on it perfectly flat. I’m also on triple RA meds including a biologic (Amgevita/Adalimumab). My biologic was last to be added to the mix but didn’t replace methotrexate and hydroxychloroquin. Recently (having been stable for almost a year) I asked to reduce MTX injections from 20ml to 15ml which I did 2 months ago and have not noticed any change in my RA. I will carry on with this dose for 6 months now but then hope to reduce further or instead stop hydroxychloroquin (with my Rheumy’s support). Not sure which might be best road to take ??
I was on Humira, methotrexate and sulfasalazine. They took out the sulfasalazine first as I was having liver issues on the triple therapy within weeks of starting the Humira. A few years later my methotrexate was reduced from 20 to 10 and I have remained stable. I was swopped to the biosimilar Amgevita a few years ago. My ankles are also unstable but have been much better since I was referred for orthotic insoles. It might be worth you asking for a referral. My rheumatologist was skeptical when I asked but I had bumped into a podiatrist on a walking holiday and he specifically came over to speak to me to say insoles would help my issues. I insisted, feeling quite a fraud in the clinic looking at all the other mobility issues the people in the waiting room had, but they have made such a difference. I have them especially measured and they have softer foot bed. I am allowed a new pair every two years.
Hi, I've had Rheumatoid Disease for 40 odd years. I still dance, swim, walk. Just don't give up moving... little bits when it hurts a lot, but get back to whatever you enjoy doing as soon as you can.
And biologics have just given me a new lease of life! Yes it may be trial and error but hang on in there, you'll get there in the end.
I know! isn't it crazy how we are given information and told to pick one. I will be starting on the biologic cosentyx? Why did I pick it? Truthfully, because I like the sound of the name. I know. Ridiculous. But that and the fact that it is a newer biologic were my reasons. It is a guessing game and I figure it really doesn't matter. I picked methotrexate because leflunimde was harder to say and I ended up on leflunimide when methotrexate was awful. I would think a doctor would have a preference on which we might try but my rheumatologist won't utter a single preference or reason for a preference.
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