Tha k you so much for the friendly replies on my previous message.
One recurring theme That I noticed was that biologics stop working at some point. For some because of an infection (covid or something else) for others its just seems to stop.
I am a complete newbie, I started baricitinib 4mg about 11 days ago.
So any anecdotes or advise for you experienced folks is much appreciated.
How do you notice that a biologic stopped working? Do you get a flare?
What happens then? Does the rheumatologist just put you on something new?
Are we doomed to continually jump from one drung to another? What is the longest a drust has worked for you? Someone mentioned 3 years. That's seems awfully short.
Many thanks ladies. Truly.
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Ryka
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People only tend to post problems! I do know someone who has been on the same biologic since they were first authorised in 2004 (maybe 2006?)!
Remember some people come off them as they go into clinical remission and taper off all drugs - not many, but some!
But yes, things stop working (sometimes because your body builds up resistance to the drug, side effects build up, all sorts of reasons). And you get swapped.
Thank you! Thats really nice to hear! Especially that some people go into clinical remission. I'll try to find out more about that. All the various doctors tell me that I have be on medications until I die.
It’s better that they don’t give false hope, as it’s fairly rare. But some people do manage. I have had a couple of years where I was able to reduce doses, but then flared and had to go back up.
You may have to take them the rest of your life I'm afraid, can't sugar coat it. RD is a chronic disease & as such for most needs medicating, even if achieving remission, although doses may be reduced. This may be a helpful read of what remission means everydayhealth.com/rheumato...
That is true. We have arthritis in the family (mom, grandmom, maternal aunts etc) no one has had remission. But still, its a nice hope to have. 'a fools hope' as Gandalf said
I've been on a biologic ( Cimzia) since 2014 and have been fortunate that it has worked for me. It started working quickly and I have been in remission ever since. I also take 10 mg of methotrexate a week, but the nurse was talking about stopping it.
I don't fully understand the process .They use blood tests(crp less than 5) physical examination of small joints, detailed questionnaire about ability to perform everyday tasks , pain levels, level of mobility etc over the preceding 2 weeks. These are used to determine the disease activity score - sorry I cant remember the cut off point. Im sure someone else will be able to tell you. There might be more info on the NRAS website .
I have been on Adalimumab since 2006, initially Humira and now Amgevita. Been in remission ever since I started on it, I take it with methotrexate. I was very ill before I started on it, long may it continue.
I started my biologic (Amgevita) 2 years ago and it’s worked so well for me ever since and no flares at all during that time. In fact during the last 12 months I’ve been able to reduce my methotrexate from 20mg… to 15mg and more recently down to 10mg.
I am on 4th biologic as first three didn’t start to work enough.This one I am on is Abatacept.been on it 4 years but struggling again so wondered if stopped working for me.Seeing rheumatologist next week to discuss. Hope yours works for you
Thanks so much for sharing. I am now starting to wonder if the success stories are biologic+methotrexate combos. Sending lots of good luck for the rheumatologist appointment.
My leflunimde became much less effective after I got sick from the first covid vaccine. I have read on here that Dmards have worked for years and years (10 or even more) for some people but I haven't seen the same for the biologics. That could mean though that people are totally stable living their best life on a biologic and so they don't come on here. I hope that is the case.
Someone else also shared a drop in efficacy after covid. Interesting that it also happens after a vaccine. Thank you for sharing. I am also wondering whether the remission cases are people taking dmards+biologics?
I have been on a biologic for about 14!years, it worked within 24 hours and has continued to keep me in remission. From not being able to climb stairs and walk after a few hours after work it completely changed my life. I still continue to inject as I am told the injection is the only thing that is keeping me in remission. Unfortunately for me I now have OA, which is causing problems.
I was diagnosed with PsA nearly 40 years ago I have been on many biologics since then. Some have just stopped working and some stopped because of serious side effects. 10 years was the longest spell. I am being screened for another and hope this works ! I have a really good rheumatology team . I think I am just getting old and my body tired!
It’s interesting that you have been on biologics for so long. It’s been just 6 months for me, but I have already had 2 serious chest infections and a septic elbow — so cannot inject when taking antibiotics etc. I read that infections are more serious whilst on Amgevita , have you experienced any problems?
Some biologists have been stopped because of side effects ….thrush , repeated infections, problem with eyes. I did persevere but sometimes it was all too much. Yes infections if they take hold are more serious .
I’m in benepali, have been since 2016. I had one winter where I missed 12 out of 14 doses, and it still worked on restarting. I take MTX for my peripheral symptoms, I have AS. The MTX is also used to try and prevent my body making antibodies against the biologic. I know many who’ve been on the same one for years with no issue. You will still get occasional flares, although mine aren’t as intense as pre biologic, so flares don’t mean it’s no longer working. Biologics only turn the dial down on 1 of many cytokines, so if the others are higher than normal it can result in a flare. Yours targets the tnf cytokine.
Thank you for the detailed explanation. I was indeeding starting to wonder if a dmard-biologic combo was needed for a remission. And it's good to know that the flares will come, albeit in lighter forms. I wont immediately start stressing that the meds stopped working and trigger a response from the stress.
Bloods show ESR (inflammation level) high plus pain returns. Personally I am on my 3rd biologic. The other two lasted 7 and 8 years respectively. I have been on Rituximab for 3 years but might have to change again as get a lot of chest infections..but I am asthma too. We are all different. We are very lucky having these drugs available. When my RA started 40 years ago ..steroids were the only things that helped me. Take care
Thank you for the reply. I am starting to realise that I am indeed lucky to have so many options in meds. My grandmother also had RA and she only had steroids.
I've been on Cimzia for many years (can't remember the start date) it still works. I have just had to have hydroxychloroquine added back a few years later.
Yes my symptoms improved when 400mg hydroxychloroquine was restarted. I did try reducing the dose to the equivalent of 300mg but symptoms returned. So sticking with 400.
Hi, it’s a bit of a lottery and we are all a bit different in the ways our bodies react to medication. I guess it all depends on how severe our RA is, age, diet, other conditions, allergies etc etc…
I know that when you have a drug that gives you back quality of life and freedom from painful flares, you hang on to it and make the most of the good times all the while hoping it continues.
When flares return, it’s a clear indication that the magic has ended and it’s time to find another drug…
Personally, I’ve found Tocilizumab works for me. Over many years, I have also found a healthy eating plan (I’m vegetarian- though no idea if that helps, I suspect it does), low sugar and very little dairy, helps me. Proven by the simple fact that when I lapse into eating not so healthily I suffer….
Thank you so much. Yes. I am a vegetarian too. And it was dairy that triggered a mother of all flares in me. I am also trying to improve gut health etc. But yes, it is a bit of a lottery. Hoping it works for me too. And hoping yours works long too.
Hi I started Biologics in 2004 my first one became less effective after 2 years so was swapped onto Adalimumab ( Humira) which worked great for 12 years but I then had nasty side effects so it was stopped. I had Rituximab for 3 years then swapped to Abatacept which I’ve been taking for 3 years. So yes some people can be good for a lot of years. It’s trial & error as we are all different. You will be well monitored with blood tests which show inflammation & wether your meds are working effectively
Take a look at NRAS ( National Rheumatoid Arthritis Society) website. Lots of info & booklets available on there. X
Thanks a lot for sharing. Yes, its a searching to find the right fit and then moving when things don't work. I am starting to realise that its as much a mental game as it is physical. It maintain a calmness when a drug stops working and to not stress out and exacerbate the RA.
Everybody is different.It’s interesting reading of other people’s experiences, but don’t try to work out a way to succeed on a certain drug for ever….that will probably bring disappointment. If you are feeling well with minimal pain for a long period of time- that can be called remission….but what’s in a name?
My Biologic appeared to stop working after 6 years - after a Covid vaccination…. but maybe it was going to stop anyway?
I didn’t flare too badly & I’m about to give it another try…but just having had Covid…it’s all up in the air.
It’s best to enjoy a successful drug….maybe until it isn’t doing it’s job as well…& then move on to hopefully another success….new drugs are appearing all the time, and your experienced rheumatologist will advise when it might be time to change your drug.
Many here have been on a drug that suits them for a very long time …..let’s hope you are one of them!
Second, Humira, worked brilliantly on most (not all) symptoms at first and then just stopped working after about 9 months.
Now I've been on Cosentyx (adalimumab) for about 18 months and I think it may have stopped working - all my back problems have returned and I've had some mild finger swelling.
I'm going to see how it goes as it's the only one that's helped my back so I really don't want to give up. But there's no denying I'm just not doing as well as I was.
I had Covid in October but otherwise no obvious illness that may have caused it. I fell over in December and that triggered a flare in my knee and it's been downhill since then.
baricitinib stopped working for me after the first covid vaccine. Now if I am vaccinated I stop taking my meds 3 days before and 3 days after. I’m on Rinvoq and have been for over 19 months but it was a long road to get here (10 drugs in 4 years). The first drug I was on sulphasalazine I was in it for over 15 years.
Don’t know if it helps but I started a YouTube channel on my life with rheumatoid arthritis youtube.com/@heatherslifewi...
Oh. That's a great tip about stopping 3 days before and after. I'll discuss it with my rheumatologist next time I need a vax. Thank you. I'll definitely follow you on YouTube! How nice that you have the energy to run a channel.
I was on rituximab but during covid It was stopped and I was put on baricitinib because it was safer but then put back on rituximab because baricitinib was affecting my liver but now the rituximab isn't working like it was before covid
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'a fools hope' as Gandalf said
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