I posted two years ago with a request to those who have tried to taper off Biologics to share their experience.
Previously, my goal was to stay on MTX and taper off Biologics but I decided to first drop the MTX ( I was only on 7.5/10 mg). I dropped MTX for a year and then slowly started to spread out the time between Abatacept Infusions.
With Abatacept the Infusion rate is 1x month. I stretched that to every 10 days. When COVID came my doctor advised me to switch to self Injections. I kept adding an extra day to my injection time to the point where I have been off all medication for two months.
I have not had any flares nor have I had any morning stiffness and do not have the need for any pain medication.
I'm a bit scared and waiting for the shoe to drop. If anyone went off meds how soon before symptoms returned? Were you able to find remission again? As a side note* I had a very high anti CCP reading at diagnosis but went on a Biologic almost immediately.
My main question is has anyone gone years off their medication only to have RA come back with a vengeance? We are all different, no doubt and chances are not particularly in our favor to remain in non-medicated remission. Perhaps this is just a drug holiday for me but I can't help but hope that things remain stable. Even if others have gone off and stayed off medication I do realize this is not going to determine if I can remain drug free. It does, however, help tremendously to hear other peoples stories.
Thank you
Lucy
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Lucy11
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Interesting question Lucy. I do not have any experience of tapering off my medication but would be interested to know. I am only on Abatacept which I self inject every 12 days. Would love to come off it 😊
During your entire time in remission (with Orencia) did you ever flare? You almost space your meds to every two weeks instead of every week. Are you quite small? I don't weigh a lot and my doctor said its easier to adjust dosing with your weight when using injections by spacing them out. Or do you space them out because you are well controlled?
Hi Dianna, yes I am very petite and I found the standard dose injection injected weekly versus my weight was too much for my body, this dose triggered the reoccurrence of my migraines with a vengeance. Discussed with my consultant and he agreed I could space out the dose. I have been using Orencia as a mono therapy biologic since the beginning of 2017 and it was indeed a 'miracle' drug for me, it eased my RA within weeks! I would be interested in spacing it out even more as I am not convinced it is still working - the occasional mild flares I tend to get now are often related to me over doing it in the garden or an increase in barometric pressure.
I am reluctant to change my biologic as I have had no side effects other that the migraines that I am aware of, my quarterly bloods are always normal etc.
I thought that you might be petite with your dosing. Orencia was indeed my miracle drug too. I can go on long bike packing trips without a lot of sleep and still not flare. On Friday I rode over 4000' meters of gained elevation (over 13,000 feet) Three mountain passes and I didn't have any issues. All of this in combination with other factors has led my doctor to give me the blessing to try to taper off. It's still a gamble. When is it not? It still scares the devil out of me as I don't want to go back to square one. I never feel 100 percent on meds. I'll keep you posted.
I am clinically induced remission and have been for over 12 years and although I managed to stoped taking all my other medication I still inject every 2 weeks. I have asked my rheumy if u can stop injecting but the simple answer was no!
I don’t like the thought of injecting forever but the thought of RA being active is something i I don’t want to happen.
When I was first diagnosed I already had joint damage in feet and hands. I had hardly had any symptoms while this was happening!!!!
If you feel it’s something you want to do then it’s your body but I would obviously make sure you have talked it over with your consultant/ nurse first. I am sure they will do regular blood tests and scans.
Yep, I realize there is no cure for RA but there's a small percentage of people who can go off meds. That percentage has been rising due in part from treat to target and biologics, although it still remains small one can only hope they are one of the lucky ones.
I'm in a fortunate place in that I have seen my doctor every month for the past 4 years. We have been trying to reduce meds as I have never had a flare in all my time in remission. He also doesn't have a crystal ball and the gamble is solely my own. I make the final decision and its definitely not an easy one to make which is why I am asking for experience from the group.
I'm aware that the bottom may fall out and we're all different but I'd love to know if anyone tried to stop all meds and remained stable or how quickly they flared.
It's just for moral support and comparing notes I guess.
Thanks for this. I hear and respect your take on the situation. My doctor is aware and initially wanted me to try to spread the dose out during the early days of COVID now he likes that I have been two months away and have no inflammation on ultra sound. Blood inflamation markers don't work for me. Mine are never elevated.
I see you say you see your doctor every month......here in the UK that is not usually possible ....that being the case you are very fortunate to be under constant supervision & therefore any hiccup could be quickly spotted.
It would be much chancier in UK......so I would not like to encourage anyone here to try to alter their dosage as you are doing......appointments with rheumatologists are few & far between, & as you will see if you read some of the experiences written about here, how really long waits people can experience.
I am In the fortunate position of only needing one Rtx infusion every six months to keep me stable...but I am still on drugs which I don’t think counts as remission....just controlled....but I am very happy with my situation.
So delighted for you, what great progress. Which surely must have something to do with the perfect combination of good genetics, a good lifestyle and the right mix of treatment?
I’m still plodding on with biologic and MTX, and reducing MTX slower than a aged snail, so can’t provide any experience.
But some people do achieve drug-free remission, so why not you?! Somebody posted an article about remission the other day, VeryWell Health which is Cleveland Clinic so fairly reputable. Anyway it gave drug-free remission as occurring between 3.6 and 22% of the time. Rather a loose range, but best they could offer. So maybe hold 22% in your head and tell yourself you have a 1 in 4 chance which is not bad at all is it?
It’s you! So happy to hear from you. I’m pleased to hear you’re in a good place at the moment. Slow and steady wins the race... aged snails may not be such a bad metaphor.
You mentioned good genetics possibly contributing to my progress thus far, funny, I thought genetics is what got me into this mess in the first place? Perhaps it’s also contributing to having success in coming off MTX and lowering the dose of Orencia. I never thought of that. I always just assumed I was broken.
Lifestyle is a plus for me and maybe I got lucky with the right combination of meds early on in my treatment so I’m going to play it out and see what happens.
Thanks for putting it into perspective and sharing the article with me. 1 out of 4 definitely doesn’t sound too bad.
Interesting, do you mind me asking your reason for choosing to come off yr meds? All I know is I wished to come off Hydroxychloroquine... only as I had been on it for 3 years and was getting a little concerned if it may get to a point of affecting my sight... no reason, purely my thought process. I had been on Benepali for around 2 years and always felt this was the Medication that was making the improvements. They were reluctant for me to totally come off so I halved it to 200mg daily... after 3 months I had the most dreadful , long term flare ever which took a long time to get a handle of. My usual fool proof Prednisolone took many many weeks to have an effect!!! All I can say is I went back to 400mg Hydroxychloroquine, daily. With that and the Benepali I am in a totally different, functioning place now. I would stress if you do go medication free I would recommend you continue regular tests / scans etc to keep an eye on any worsening of conditions. Keep us posted... could give us all some hope!
Thanks for this. You mention that your fool proof prednisolone didn’t work as quickly after you tapered your meds. Did you have flares during the time you were on Benpali and Hydroxychloroquine requiring you to take steroids from time to time?
For more than three years I never took pain pills or steroid. I was in complete remission. No morning stiffness. No pain. I resumed extreme cycling and running. That’s one of the reasons I decided to try to taper off meds with my doctors blessings. I also often go weeks at a time on big bike packing adventures and I can’t keep my medication cold when I go.
I’m fortunate to have full access to my doctor whenever I need to otherwise I wouldn’t be able to take the risk. If something doesn’t feel right I can get looked after right away and I will have ultra sounds frequently to monitor underlying disease activity.
Thanks for replying. It helps me see a different side of tapering off meds that is both humbling and important to hear.
Hi. Just read back on my diary of notes! Started Benepali in Oct 2017. I had first course of Prednisolone in early days whilst just on Hydroxychloroquine as my inflammation was so severe and I had already suffered permanent damage to my wrist before I had even been diagnosed! I had at least another course of Prednisolone whilst on Hydroxychloroquine and Methotrexate ( took for 6 months but rheumatologist decided it was not working so stopped it also due to many side effects I couldn’t tolerate). I also had a few steroid injections into my finger as the inflammation was not going down. The latter ultrasound guided steroid shot worked. I started Benepali after stopping Methotrexate and remain now on Benepali and Hydroxychloroquine. I have only had to take Prednisolone once whilst on H and B as I did have a dreadfully bad flare ( lasted more than 4 months). I had so many tests and only thing we found was low Vit D. I still think I had some sort of infection that wasn’t detected. In the past I feel the energetic effects of Prednisolone literally from the first dose... this last time it took 2 weeks of them. GP believed the flare and inflammation was so set in the effects were not as good! I did find it intriguing that 3 months after halving my Hydroxychloroquine this long flare started. I always wondered if the H is actually having a better effect than I think! Seeing as you had such a long period “ in remission “ does it ever make you wonder if your diagnosis of R.A. is correct? Could it be some form of reactive arthritis? I note your anti ccp was high ( mine was 196) but all my other inflammatory markers have always been in range... even when I have fingers like sausages. It sounds like you do not have any joint damage as you seem to be able to enjoy some extreme and physical sports. Long may you enjoy that!
Thanks again for your reply. I had an MRI early on and it was clear that I had RA in both hands and feet. I had bone erosions indicative of RA along with an anti CCP above 200. Interestingly my bone erosions began to heal. I know, that sounds too good to be true but they were healing as was evident on X-rays and MRI. Weird. Happy weird. There is lingering damage in my feet and hands which I feel after long days on the bike but I carry on.
I am not a sweller. I never was. In the beginning I had slight swelling in my thumbs but never sausage fingers. My CRP has always been, since baseline, 0.01- it never budges and I tested negative for RF. I had low Vitamin D and since day one have been given, by prescription, Vitamin D/ Calcium pills that I take daily.
I'm a never smoker and was a professional triathlete for quite some time. Perhaps continuing to move my body as much as possible helps? Perhaps Genetics? I do know being female doesn't help.
I don't know where I'm headed but I truly would like to take less medication simply because who likes to take meds? It should be noted that I am not anti meds, not at all. I jumped on Biologics 2 months after diagnosis without reservation. I believe treat to target and early aggressive treatment is the way to go. I just want to see if I can lower or remove them at this point.
I will am tapering my Tocilizumab infusions. I started out 3 years ago at 600mg IV every 4 weeks, dropped it to 480mg IV 4 weeks, down to 260mg IV 4 weeks now I am down to 200mg IV every 6 weeks. My body seems to be adjusting to the lower dose quite well and my symptoms are still in check.
This is great to hear Scott. I feel immensely better when I take less medication. I will speak with my Rheumy and see if I should give it a go to continue without meds or try to spread it out and remain on a very low dose.
I’ve stopped one of mine and tapered the mtx. Not touched the biologics though. I’ve been doing this since March lockdown without any change. Stopped one back in April and it’s made zero difference. Spread out the mtx without change too. I’m still stiff and can’t walk brilliantly, but it’s exactly the same now as it was in February anyway. It’s not as if that has improved by taking the full dose.
I have a Zoom appointment today with rheumatology. First appt in 18 months, so I’ll mention it today. Good luck!
I am just interested to know if your medication alterations are being supervised and in liaison with your RA dept. Give me a Biologic any day than take methotrexate, I was so ill on methotrexate. I have had RA since I was 22 I am now 73 and I have been on many drugs but reduction in dose etc has always been monitored by my RA dept. Incidentally I have been injecting Etanacept for over six years now and I find it to be a miracle drug. I take no other drugs accept Paracetamol when required.
Thanks for your reply Ray. You have had RA for quite some time and thus have first hand experience with the evolution of treatment. Treatment 22 years ago is quite different than it is today and in 22 years it will likely look quite different again.
I am very fortunate in that I had four solid years of seeing my Rheumatologist every single month, no fail. This is the only reason I am comfortably able to experiment adjusting my meds. I am closely monitored and listen to the advise of my doctor. Of course, doctors don't know who can go into a drug free remission and stay there but apparently up to 22% of RA patients can achieve this. There are no biomarkers to indicate who are good candidates but they do have medical experience and expertise to suggest trying it.
My doctor used the following criteria to support such a try:
1. I have had zero disease activity for more than 2.5 years. This includes zero stiffness in the morning. At diagnosis I could not hold a cup of tea. It was hours before I could make a fist in the morning.
2. I can engage in extreme cycling events and go through stress of little to no sleep during these events and not flare.
3. Ultra sound indicate no inflammation for more than two years in a row.
4. MRI and X-rays show healing of bone erosions.
5. I never smoked
6. I started treat to target treatment immediately. Biologics were initiated at month 2. He believes that there is a fighting chance to reduce of remove drugs if aggressive treatment is implemented at day one of diagnosis. I did not hesitate to start all treatments offered to me. I did not go down the route of 'natural' healing first. I jumped on the drug bandwagon straight away. I do follow a very healthy lifestyle but that was always in conjunction with meds.
So to be clear to everyone, I do not suggest doing this without being under close medical guidance. I just wanted to hear stories and experience of those who have tried to reduce there medication and what happened during that time.
In an ideal world Lucy we would all see a rheumatologist as soon as symptoms appear......sadly here in the UK ...unless you take the very expensive Private route a first consult can take anything up to or even more than a year...by which time irreparable damage can occur.....treated only with the dreaded Prednisolone.
Most only see their rheumatologist once or twice a year, so no chance to try reducing drugs under close supervision I’m afraid.
Our NHS is now struggling with Covid-19, on top of it’s already overloaded commitments....& unfortunately although incurable, RA is not regarded as fatal, so early access to treatment doesn’t look look likeLy to improve in the immediate future.
I'm certain that you’re grateful for your NHS even with all its trials and tribulations. Hats off to them for providing all the they do especially being spread so thin during COVID.
I'm super sorry to hear of the long wait times. I almost shouldn't post on this site as my care is quite different and I feel awful for that. My apologies for reaching out here. I do find the tips and support equal to none and your will to 'battle on' is incredibly infectious.
I have read all your posts about your experience with RA, and what emerges is the importance of early diagnosis and an initial aggressive treatment of the condition. You have been fortunate to experience just that. In this case I can't see why you shouldn't taper off your medication. I have heard of others tapering off biologics after several years of treatment.
My experience is different in that I was diagnosed at 32 in 1967. Nothing much happening then in way of treatment apart from large doses of steroids. My consultant kept me off that track; but I didn't deteriorate rapidly. In 1988 I started on my first DMARD. It was magical.
Only stopped in 1998 because of a small skin cancer. I started Methotrexate which had the same magical qualities. In 2008, my consultant told me I had "burnt out". When I asked if that meant I could stop the Methotrexate, he said No!
Fast forward: Earlier this year I started a biologic after an aggressive flare. I'm not happy with it, but I'm hanging on because it's early days. I shall be 85 tomorrow, and very uncertain about the future with this biologic. I still take Methotrexate (10mg).
It is important to keep informed about research and the way thinking about treatment can change. This I try to do. I can't claim that I'm as active as you! But I have practised Yoga over the years and kept quite supple.
Many Happy Returns bienassis (love your name!)....marvellously heartening to hear your positive attitude to RA within your life! Do let us know how you spend your day! sue.
Thank you so much for your birthday greeting, Sunny. We will be in the garden for lunch - my husband, Bertie my cat and myself. Just the three of us as my daughter is in France.
Bienassis - is the name of a small chateau in Bretagne. It conjures up many happy memories of holidays in that part of France in the 1960s and 1970s. Those were simpler times; mass tourism hadn't really got going then.
Enjoy the weather - the temperature has started to rise again!
What a lovely way to spend your birthday. I’m always slightly envious of those who celebrate their birthdays in the summer! Being a January girl, only rarely have I found a sheltered spot of the garden for a little celebration. once even managing a family lunch ..plenty of warm clothing I recall. We too loved our 60s -70s holidays in France... my girls favourite trips down memory lane are always of those blissful days!
Bienassis, thank you so much for your lovely, thoughtful reply. You're a beacon of inspiration, truly. I do hope that the Biologic you’re taking begins to kick in soon. If it doesn't work to your satisfaction I hope your consultant revisits your treatment plan and offers another option.
Thanks again for your reply. I will keep at it and continue down this path wherever it may lead.
Hi Lucy I’ve just read your post now. I’m 67 diagnosed at 38 with 2 young children. I’ve been blessed with 3 remissions. Two happened almost immediately when I had flu ( 3 years each and no meds). My last remission was 13 years ( no meds). It felt like a miracle. I’ve been poorly for 4 and a half years now with a tiny remission of 4 months ( with meds ). So it can happen to some of us. I wish you good health and that it happens to you - I wish it could happen to all of us.
To see your consultant once a month - wow that’s good. Are you in the States?
I came off all medications over 2 years ago.....due to no tolerance..
Since then my RA has progressed i have flare ups of a mixture....I also have Fibromyalgia and. Arthritic psoriasis.
It seems my body is under constant attack from itself. ...Chronic pain is daily.
I took over the years (diagnosed 40 years ago with RA) every drug known for RA all resulted in me having very bad side effects....and never any real improvement from RA.....
Yet off the drug i did not feel ill....but on them i was washed out and tired....
I have managed using alternative methods.....tens machine..meditation..yoga...diet..and anything that relaxed me....not alcohol that would flare me.........
The Arthritic psoriasis is a nightmare of nerve pains ..burning... itching... swelling .
I use a cbd cream with no hylosagenic in.
That helps...no side effects...
Plus i swear a lot i make new swear words up.....this is in my own home only...
Mostly i keep positive I have never treated it as an illness more of an inconvenience.......
I've just read your post of 11 days ago. What a horrible time you are having. Unimaginable.
Really, until the true cause of RA and related conditions is nailed, no seriously good treatment, never mind cure, will be possible. Until then, experiences like yours will continue. At the moment, treatment is a game of chance; if you're lucky and you strike the jackpot with a drug, or combination of drugs, that work for you, then the future has some hope.
I'm not sure that I could treat these conditions as an inconvenience. They are truly handicapping. You have certainly drawn the short straw. It takes a lot of courage to face each day with a positive attitude as you do.
I was going to end with a Good Luck message, but that would be too easy - you need attention from a competent specialist who understands your situation and is prepared to spend time working something out for you. Your condition is challenging, no doubt about it, but a better quality of life must be available somehow.
Do take care, and if you do manage to get more support, post again and let us know the results. Meanwhile, enjoy what remains of the summer.
Many thanks for your birthday wishes, Lucy. We shall have lunch in the garden - by "we" I mean my husband, Bertie the cat and myself. Our daughter is currently in France but since I've been told to continue "shielding" she wouldn't have been able to be here.
Beautiful day; quite warm here in Kent so ideal for sitting out.
I do hope you continue to keep as well as you are. Enjoy the rest of the summer.
Lucy I'll be so interested to see how you get on. I came off Orencia, which worked really well for me, partly because of irritation at having to cocoon from Covid like a 70yr old despite being a fit and (otherwise)healthy 41yr old and partly because of mouth ulcers every month that were so bad I could not speak or eat for a few days. I had tried Humira and Methotrexate before. I am a scientist myself so did some research on inflammation and am on a no dairy and no red meat diet now. I had decided on it before stumbling across Shelly Malone's Inflamed book which has lots of advice on inflammatory foods etc and helped a lot. I am currently at 7 weeks off meds with only the vaguest hint of stiffness in my affected fingers, much less than the little monthly flares I got on Orencia. But its early days, Orencia takes 12 weeks to leave the body. Like you I feel like PsA will land on me like a ton of bricks some day, it is an unnerving wait. My rheumatologist thinks it unlikely to work completely and I'll likely need both diet and less Orencia to manage it but I feel I'll be happier to put up with the meds once I've given this a good shot. My bloods show no inflammation but I'm not sure they ever did. My fingers are slimmer than they have been in years, no heat in joints, no swelling. I am amazed to see aches come back as soon as I eat butter, or use antibacterial sprays without gloves, things I had never thought of as possibl adding to my PsA. I will certainly be less careless forward, no matter what the outcome. I really hope it goes well for you Lucy, it sounds like you have had a tough time with this condition. Keep us posted
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