I've been on triple therapy now (methotrexate + sulfasalazine + hydroxychloroquine: max dose of all three) for the best part of a year now, and whilst trying to slowly reduce my prednisolone down 0.5mg a week (as I'd been recommended) experienced a big flare-up of symptoms again when I hit 5mg. I've turned them up a few times since, currently back up at 15mg, but still having problems. I think maybe the time has come to start of biologics, as my rheumy had offered to start me on adalimumab last year, but I wanted to persist with triple therapy as it seemed to be starting to work.
I'm quite anxious about a few things though, and I thought maybe some of you might know more about this than me!
Chiefly, I'm worried about adalimumab working like an absolute dream for a short period of time (a few months or years), and then losing its efficacy, which is apparently relatively common. I understand there are a few different broad classes of biologics, so they can switch you from one to another, but what happens once you've worked your way through them all? I know that there are also biosimilars, but get the impression that switching from a biologic originator to one of its biosimilars isn't going to make that much difference, as they're only superficially different.
I'm still only in my late 30s, and I've a family to provide for, and I'm worried about the possibility of burning through all the biologics by the time I'm in, say, my 40s, leaving me with nowhere to go!
ALSO, when biologics lose their efficacy, do they tend to lose it completely, or can they still work if you reintroduce other DMARDs you may have weaned yourself off (e.g., Sulfasalazine)?
Apologies for the slightly waffley post! I would ask all these questions of my rheumy, but face to face appointments aren't happening and the phone line at the hospital is absolutely dreadful so I can barely understand anything they're saying, ha ha.
Thanks!
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Smelliott
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As you know there are an awful lot of biologics on the market these days and many more in the pipeline. All of them have different effects on the system and are prescribed according to your clinicians’s professional opinion .....so don’t worry..... it took many of us a long time to find a biologic ..or any other drug for that matter.....that suited us..... and once we did ... all doubts flew out the window.
Yes some seem to to work for the first few months...or even years..... and then sadly it’s all change time again.
Patience really is the answer I’m afraid ........none of us have enough of it but if you can just stick with it..... listen & discuss with your doctors.....I’m sure they will find the right drug for you.
It’s no good me listing a whole list of drugs that I hated or a whole lot that worked ......because that’s what happened to me, and unfortunately it isn’t one size fits all with RA.
Try to be optimistic that something works out for you soon......20+ years ago I was where you are now, and the drugs you have available weren’t available then ....so you have a head start on a lot of us.
Yep, I'll get my optimistic head back on. Helps the placebo effect if nothing else! I am naturally a very sunshiney person (it drives my wife mad how optimistic I am), the last year of painful feet combined with endless lockdowns has just ground down my natural resilience, I think. Thanks!
A good place to start is the NRAS website pages on treatments.You will doubtless get lots of conflicting reports from people here - some people have done really well on the same biologic for ages, others are, as you fear, working their way through the present selection.
And that is the crutch of the matter - the present selection of biologics.
I have seen an enormous change in the range of treatments available - I had gold injections.
The next step, will, I think, be tailoring the immune suppressant to the type of overactivity that each person has. Together with lots of new treatments as the unravelling of our complex immune systems continues. The pace of research has recently accelerated with the injection of funding into this field with Covid19.
I'm extremely hopeful for the future of treatment for this horrible long term illness!
Hi S I certainly understand your concerns . You are still young so time on your side. I’m on my second Biologic now much improved but still not there. I’m on a relatively new drug now and my understanding is there are more to come. For me it’s about quality of life . I want to participate not let life pass me by or struggle so I’m willing to try anything. If it don’t work then on to the next. You will get there .
Life is just about to begin Smelliott...I’m just about to go round for the second circuit.....& even allowing for the rotten RA times that I have had I would do do it all again⛷⛹️♀️🤸
If triple therapy isn't giving you really good results I'd say that it's definitely time to try a biologic. I'm very lucky in that it's working well for me but if it wasn't (and I think that the fact that you're still on steroids shows that it isn't) I'd be onto the next option as soon as possible. I can understand your concerns but as the others have said, we're the lucky ones in that we've got access to these medications and more are being developed all the time. Good luck and keep us updated 👍
I was on triple therapy pretty successfully for many years. I ended up on max doses of each, but eventually it stopped working as well as it had done. My rheumy wanted to move me onto biologics and I dug my heels in... Which is so weird as years before I had a bad case of biologic jealousy!
I was only slightly worried about run out of drugs to try as since I was diagnosed there have been soooo many new ones. I was more worried about infection risk.
Anyway I did finally change a few years back, and am pleased I did. I was pretty ok on triple T, but the improvement to my hands has been wonderful! I continue to take MTX alongside which helps ensure you don’t build up resistance to the drug and have been fine for over 2 years. It was first used in the UK in 2000 and some people have been on it ever since.
At last count I think there are around 50 new drugs.....4 groups of biologics/biosimilars (anti-tnf, IL6, B-cells, T cells) with between 3 and 15 drugs in each group, the the CD20 drug Rituximab, and the the JAK inhibitors of which I think there are already 4 or 5. At least one new drug appears every 6 months or so as these are very profitable for the drug companies! So I really wouldn’t fret at all.
I was put onto Humira over 15 years ago; I was recently switched to Amgevita, a biosimilar. I have not had a flare since starting on biologics. You don't know how it will go until you try, but they changed my life.
No choice. The rheumatologist said that was what the Trust was switching us to as it was cheaper. If it didn't work they would switch me back. As it was the biosimilar to Humira they didn't anticipate problems. I was worried at the time but I am just as well on the Amgevita, if anything possibly a little better.
Under nice guidelines you could have refused. You had to agree. I refused giving my reasons and was left on Humira. The difference in costs is actually only £71 per month. Biosimilars are molecularly different from the original one. They have found many people who were forced to change the biosimilars didn't work as well and when changed back the original no longer worked. This then costs the NHS more money than leaving people on the originals.
Luckily it worked out for me. At the time I switched the price difference was more than double, the price of Humira has fallen due the introduction of the biosimilars. Also there wasn't the data on switching that there is now. I was concerned at the time but agreed as NHS budgets aren't unlimited and if it saved the Trust money it seemed only fair to try. As I said I feel I am slightly better on Amgevita, hard to tell for sure as I also do a lot of different thing now than a few years ago. They have both been brilliant, I've gone from being unable to lift a cup of coffee to skiing (if we are ever allowed to again!), able to walk seven miles, sailing, gardening - basically doing anything active I feel like doing. I still get tired if I do too much but it is energy rather than pain that stops me now.
Not true about costing as this was part of my research. £704 for Humira per month and £633 for biosimilars. You have been one of the lucky ones as majority haven't. Our clinic had to put nearly all back on Humira as the Imraldi was a disaster. Although Imraldi does seem to cause more problems than the others. Glad it's worked out for you.
That's reassuring. My Rheumy suggested Humira during last apt but I am terrified, and opted to add HCQ to MTX which I am currently taking. Seems like HCQ is starting to work but I still get random aches & pains in some joints and then there is fatigue. She told me that she can send the prescription in whenever I feel comfortable with the decision to take Humira. However I worry about increased risk of infections and also other side effects. Have you experienced any side effects with Humira in all these years?
I have had no side effects at all from Humira or Amgevita. I was worried about the increased chance of infection but haven't noticed it. I worked in a school until retirement so cold and stomach viruses abounded, but I didn't pick them up any more than other staff. I did keep handsaniter on my desk before Covid was thought of though and sent sniffily kids to the back of the room! The injections are easy, initially I was on real injections but they then became a pen which is even simpler. Initially I was on methotrexate and sulfasalazine and had the Humira added in, that did lead to some elevated liver readings so they dropped out the sulfasalazine and the reading came back to normal. I have also been able to reduce the methotrexate from 20mg to 10mg which has been great as I hate the methotrexate.
Can understand your anxiety but I think that the boffins are producing new treatments all the time, so trust that there will be something if and it still is only an if, you need them. Otherwise you will be suffering pain and damage to your joints and anxiety as well. Good luck.
Hi Smelliot, I've been on Orencia for three years now in combination with hydroxy and methotrexate and it's continuing to work. In fact it's a miracle.
What you need to bear in mind is that people who are doing well on biologics don't come on here to say so, so posts saying the biologics aren't working for the poster over represent the problems people have with them.
Also the damage being done to your joints is permanent so the longer you put off biologics the more damage will occur now as opposed to in the future. Better to have good health now anyway because you are at the peak for career progression and pay. Earn now to save to cover you for later problems.
Yes, there's definitely a reporting bias with these things! I remember telling myself that when I was reading up about methotrexate nearly 10 years ago. It seemed that everybody who took it had terrible problems until I asked myself: "Why would you post on the internet about a drug if you hadn't had problems? You'd just get on with your life!"
Thanks, and hopefully it'll keep working well for you!
Alot of RA is getting your mind around things, I am terrible for overthinking.
I look at it now as I can't go on being untreated so if a drug doesn't work for me then onto the next.
I've overthought side effects, thought of loads of " what if" situations and it can just go on and on. Give yourself a break and live in the now.
My nan had RA and use to take flynn and salt powders for it (which did absolutely nothing !) and she was a force to be reckoned with. If she could do it so can we x
Please feel free to remind me of my own advice as its easy to come on here and write this, doing it is something else !
I have youngish children and I am aware of the pressures of being able to do things to support the family and I would say the best thing you can do is be proactive and get into your rhematology team when you need sorting out and don't let things fester.
Ha ha, okay, I'll remind you! I think it's definitely time to switch it up, treatment-wise. I guess at least I'll effectively be getting all the tax I pay back, ha ha. At least I'm lucky in that I've never really suffered side effects for anything I've taken.
I can really relate to a little of how you feel. I am just 45 and have only been diagnosed with RA for about 18 months and am really trying to continue to hold down my job too as well as run a house as I am on my own. I have had a few meds change over the last year and just last week had my assessment got biologics as had some complications with MTX as well as it not fully controlling my RA either. I was very reassured to read HH response too as although I was aware there are quite a few biologics I had no idea there were so many.
I am working hard to accept that biologics are the next step for me now and with a positive attitude that these could be life changing for me. I appreciate many people have had to try many biologics but am also aware that there are many people who have got the medication regime that has worked for them for many years too. This really helps me on my difficult days and how fortunate almost to have RA now when there are so many medications available compared to what there was in the past.
It is hard some days but on the whole I am feeling positive again now I have been given another medication to try and am very open minded to it too. This could just be that medication for me that knocks my RA back in touch for years to come. Please do pick up the phone and contact your rheumy team and hopefully you and I will begin our biologic journey together and may it be a really positive one for us. x
Yes, sounds like we're in the same boat. As much as I'd rather neither of us were going through this, it really does help to know I'm not the only one. Actually reading everyone's encouraging responses on here as the day has gone on has really helped me feel much more positive, I feel well up for starting biologics now! LET'S DO THIS!
Looks like there are many like us here, and many have been through what we are going through. Like you @Summerrain, I am also making up my mind , thinking positive things and hoping if I do end up starting biologic sooner than I ever imagined, it would be the best thing that I could do for myself. I am very thankful to my Rheumy though, she is very open and reassuring, willing to give me time to think things through, it helps that there is trust between us. Hope you get everything sorted out soon. Good Luck!
It is so lovely to hear you have a really supportive rheumy, it makes such a difference doesn’t it? I am very lucky to have a great rheumy and the rheumy nurses. I am so appreciative for all they do for me. Always there when I need them. I will be starting on biologics in the next few months. Just waiting for now and trying to time it all with my second Covid vaccine too. It is a lot to take in and think about but I am mostly feeling so positive to start the next stage of my RA journey into the world of biologics. Thinking of you x
Hi I am in the same position as you early 30’s but now on a biologic and about to be on my second the first lasted 18 months. There are new biologics being made all the time and new drugs, so although this is a concern for me too. In my head it’s way better than being on pred long term as the side effects of that long term are not great. Biologics changed my life. Although not perfect I am about 90 % better when they work, although you will stay on your DMARDS too.
Recently I have been approached for two new trials for new biologics and while I can’t do them as it would involve a lot of travel and time off work it means they are making new ones all the time.
I'd definitely take 90% better and off of prednisolone! I used to love long-distance running, but I admitted to myself a few years ago that I won't ever do that again. Just a return to normal day-to-day functioning will do me just fine.
Hi I am on same meds as you and a year ago cut (gradually) out prednisolone an started on adalimumab and I haven't looked back. The difference for me has been great when I think back and couldn't get out of bed without a struggle or squeeze toothpaste! I must admit being bit achy in the mornings between not being so active as off work shielding and the colder weather but I had a brilliant summer being able to do gardening etc. I think sunshine and heat is the key. These are horrible times just now but stick in there brighter days to come. Also had part one of covid jab so not feeling quite so at risk! All in all its worked for me. Good luck to you and best wishes 👍
Ah, thankfully I don't find the weather makes any difference to my symptoms, but it certainly would be nice to be better in time to enjoy the sunny weather when it arrives!
There are a range of medications biologics, others and combinations to try. It is daunting and must be more so for one so young. There are new meds being added to the armour all the time and treatment is improving, so have a little hope and faith (its all we can do). As for a drug working for a time and then not - it is just as it is. Personally, I grab the better times while I can. I guess I/we have learned to take things day by day, which is much harder when you are young with a career and family...
Thankfully my work have been super cool about it, which I'm very grateful for. I miss going to work though! I never thought I'd say that. I'm definitely going to make even more of effort to enjoy life once I'm better and covid is on the wane. Live each day like it's my last, sort of thing.
Hi S, Thanks for giving us an update. Few days ago when I posted similar question ,I remember your reply about being in same situation. I am sorry the Triple T isn't working well for you. I haven't started the 3rd drug (sulfa in my case) yet. But it's only been 3 weeks since adding HCQ, so I am hoping it would work along with Mtx.
When my Rheumy floated the possibility of switching to Adalimumab (Humira) I was taken aback and frankly scared because I am just in my mid 40's and thought biologics are basically only given if all the DMARD' have failed. Since then I have been reading a lot about recent Rx approaches as new drugs are being introduced and biologics are becoming cheaper due to biosimilars in market. Seems like as the cost aspect of biologics is becoming less of a problem, it is becoming a Rx of choice for many Rheumatologists. Because it works better than Triple T, and compared to possible side effects of 3 diff drugs vs one drug is less risky. And remission rates on biologics are better than triple T as well. ( I think I read this study/research report somewhere on RA warriors or may be a link from there). This is part of the aggressive Rx approach I believe aimed at sustained regression.
The only thing holding me back is fear of side effects. But then I keep thinking, "weren't you afraid of Mtx as well?" ha..ha then I felt like a fool when nothing happened.
I hope when you make your decision you are comfortable & happy with it. Do keep us posted on how it goes. Good Luck!
By the way, my Pred taper wasn't successful, so I am back on 5mg/day. May be I will try again next week.
Oh yeah, it's way too early to expect a result from the hydroxychloroquine - I do hope it works for you! I literally just spoke to my rheumatologist, and she thought I was already on Adalimumab, ha ha! So she said I should whack my prednisolone back up to 20mg (back to square one), and start biologics ASAP. Which I'm now fine with. She said she has some patients who have been on the same biologic for 10+ years, so fingers crossed. Hopefully we'll both have better luck tapering off prednisolone next time.
Well, I am glad you are taking the leap of faith. My Rheumy also told me the same thing about Humira, LOL. And she said it works much faster than DMARDs in most cases. So I hope once you get on it you will be able to get off pred sooner too. Will you be taking Mtx or any other DMARD's you are currently taking along with Adalimumab? or just the single biologic? Just curious.
Anyway, hope you start soon and it works for you and keeps working for long time.
I think they're going to keep me on all three DMARDs at first, then once I'm stable remove hydroxychloroquine first. I'm not sure if they'll then also take me off sulfasalazine, but they're definitely going to keep me on methotrexate to try to prevent me developing antibodies to the Adalimumab. Thanks, and I shall keep you posted!
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