Tapering off Biologics.

[Lucy11]

Hello all,

I’ve been away from this site for quite some time. This forum was my lifeline when I was first diagnosed and I will be eternally grateful for it.

For the past two years I have been doing really well. I started out anti CCP positive with bone erosions. I have since been able to do everything pre RA and this includes sport.

I have gradually stretched my Orencia Infusions to every 6 weeks instead of 4. I also take 7.5 mg MTX. I have never needed to use NSAIDS or prednisone for over two years and no pain pills to speak of.

I am considering stopping my Biologic and continue on MTX (10mg)

Have any of you tried to come off Biologics and if so would you be kind enough to answer these questions:

1. If you had to restart your Biologic did it still work or did you have to try another?

2. Was it necessary to increase your dose of MTX considerably?

3. Did you flare horribly? What was it like. Did you continue to get morning stiffness?

4. How long before you had to go back on meds?

5. Were you able to get back to remission and did it take longer than the first time?

As of now I have no symptoms and I don’t have any side effects from my medication. It would be so nice to hear from anyone who tried to go off their Biologic and what that experience was like. Thanks so much for taking the time to read this.

Lucy.

[Hidden]

Sorry I can't answer any of you questions. i just read your post of 9 months ago and found it clear, thought provoking and encouraging. No symptoms and no side effects? Fab!

[helixhelix]

How wonderful that you have got to point of feeling confident enough to taper off. I do hope someone appears who can give you their experience. I can't as only on week 10 of biologics and still waiting for the magic to happen. Good luck anyway and so hope it works.

But a small plea to you not to unsubscribe as then your post about being a good patient would be hard to find. It's easy to point people to it at the moment as they just need to look for Lucy11. And it was such a great post! And so sensible for all those who feel so guilty about not being great patients.

[Lucy11 in reply to helixhelix]

Oh wow, you’ve started a Biologic, HH. I do hope it starts working and your symptoms soon become distant memories!

[Gigi71]

We have RD for life, when we find a drug regime that puts us in remission, I believe it's that, that keeps us feeling well. I have Sero-negative erosive RD, I've had this for 33 years. When I went on Humira 10 years ago I thought it was a wonder drug, in combination with Azathioprine, low dose steroids and Voltorol retard. Due to small skin cancers I changed to MTX and was advised to come off Humira and have Rituxamab, I kept on Humira as worked so well. Had many ops due to previous damage, was going down the route of needing a shoulder op but Humira stopped this. I am older now and things do go wrong, so the last three years have had to stop Humira for longer periods than I would have liked and noticed feeling symptoms of RD coming back and blood tests have shown this. We are all different but would consider before coming off biological meds. What do you rheumy team advise. I also know meds cause problems themselves, steroids have given me OP and waiting on a Respiratory clinic appointment as may have to stop mtx and change from Humira. I also think diet and exercise are important. I hope you get some more views. All the best. X

[Lucy11 in reply to Gigi71]

Thanks for this Gigi,

My rheumatologist is great and has alway advised me to stay the course as I was doing so well. On my last visit he mentioned the possibility to try and come off the Biologic.

I was fortunate in that I was diagnosed when there were many Biologics available and went on one very quickly. He believes being anti CCP positive isn’t in my favor as most with this antibody have a difficult time keeping the disease controlled. However, he has two patients with high anti CCP that were able to taper off all meds- (there is a small percentage of people who can do this. Their RA was caught quickly and they went on an aggressive treatment right away or they were just lucky)

My RA was not caught quickly which is why I am hesitant and would only discontinue the Biologic and carry on with MTX. I believe all of us want to be one of the 5-15% lucky ones.

I thank you for your input and will think long and hard before I stop. I don’t have the option to use inflammatory markers to help indicate disease activity as my CRP and ESR don’t budge.

It will be hard to trust my symptoms because I fear I will be hyper sensitive to any little tweak thinking the RA has become active again as I’m also not

one to get a lot of swelling.

As for you Gigi, I do hope if you end up switching treatment that it goes very well and you can carry on in a positive light.

x Lucy.

[Gigi71 in reply to Lucy11]

Hi Lucy . I'm sure you will make the right decision for you, together with your rheumy teams advices. They know you and with their backing, if things don't work out you can go back on them. I do hope that it wouldn't come to that. You will only know by going ahead. We all have to make decisions along the way. I was 40 when I got dx but with lupus and secondary RD. I already had Hasimotoes for 9 years. I had a brilliant consultant who had me in hospital for tests and treatment for a month. The treatment was multiple steroid injections to feet, toes, ankles, knees and hands, fingers and wrists, plus medications, that built up to the ones I came home with. Also bed rest ! That was favoured in those days. Life changes, my ex husband couldn't cope and left. I eventually had to get a full time job and bought a house with my share of our old house, plus a mortgage. I had two teenage sons. My sister was my rock. I tried all sorts of alternative treatments, diets, plus the medication. So when I was eventually put on bio meds and they worked I was over the moon. I am a very positive person and very independent. I don't have good health, have osteo in my back, a chronic cough, suffered with iron and b12 deficiency. But I have had on the whole a good life. My point is we do what's right for us and our circumstances. All the very best Lucy. X

[lucymead in reply to Gigi71]

hi can you tell me if Humira is the same as Benepali. I have been told that this also can cause skin cancers, do you know if it is the case? I have been off and on Benepali since December , it seems to work but I am concerned about cancer.

[Gigi71 in reply to lucymead]

Hi Lucy. Humira is an anti TNF and I understand Benepali is as well, just a bio similar. I had small non melanoma skin cancers and Azathoprine was the main culprit, you can of course get them with an anti TNF but I have touch wood, been fine for the last 4 years. I decided to keep with the Humira. I am under dermatology as well so they keep a check on me. Steroids have made my skin very thin, plus I am older now. Unfortunately meds can have side effects, but everyone reacts differently to them. Take care. X

[lucymead in reply to Gigi71]

Hi Thanks for that I will stay on it until they stop it. I am not very good with any medication I have been on most of them and had bad allergic reactions to most. I was diagnosed in 2013 and had lots of flares this is the best 8 weeks I have had . I am 72 and had a very active life until this horror hit me after a fall.

[Gigi71 in reply to lucymead]

I can understand how you feel. I'm 73 and as Humira gave me a better quality of life I decided to stick with it. I can't take any opiate drugs they make me so ill. I also refused to give up on voltaral retard for years, they stopped making it and my GP then took the opportunity to switch me to Naproxen, not as good, but no side effects so far. It's all a balance really. We just have to deal with things as they come along and make the most of feeling good. Good luck and hope your bio helps you too. X

[nomoreheels]

Hiya Lucy, lovely to hear from you & even better because of the reason for posting! I can't help I'm afraid but wish you well if you're able to do what you're considering. x

[Lucy11 in reply to nomoreheels]

Thanks so much NMH- I’ve missed you.

[nomoreheels in reply to Lucy11]

😘 x

[Hidden]

I can’t help with questions as only just started biologics but read your old ‘putting RA into perspective’ post with link to a really good medpage article. Thanks for that, it helped me come to terms with it more and good luck, whatever you decide to do x

[ccl51]

Hi Lucy11. I’m thinking you currently are on a “medicated remission.” Isn’t it wonderful? I had a medicated remission on Enbrel and methotrexate for 6 years. So I attempted to taper the meds. Big mistake. I then tried to increase to original dosage, but I could never get remission back. After Enbrel, I went through 4 more biologics (Cimzia, Remicade, Simponi Aria, and Xeljanz) with no success. Suffice it to say, I’ve had RA for 22 years. Within that time, I had a glorious 6 year remission. My current (last choice) drug combo is Rituxan and leflunomide, and I’m about 80% which is the best I can get. If I ever get that remission again, I will NEVER EVER adjust my drugs! I hope this gives you some insight.

[Lucy11 in reply to ccl51]

Thank you so much for your reply. Yes, there’s no question I’m in a drug supported remission. I appreciate your input. It’s clear that the majority can’t sustain a drug free remission, however, over the years more and more people have been able to taper drugs or cease due to early diagnosis and early aggressive treatment or other unknown reasons.

The percentage is definitely not in favor of this and I posted in hopes to hear first hand experience from others who tried. You were kind enough to tell me your experience-thank you!

[Simba1992]

Hello Lucy! So happy you are doing so well. I would be very interested to hear why you want to get off the biologics? xSimba

[PFKAAde]

Hi Lucy11

I realise this post is a month old, but wondered if you had made a decision regarding discontinuing Humira?

I ask as I am in a similar position to yourself. I have had seronegative RA for 20 years and the first 10 years were, inconvenient, to say the least. When I say seronegative it has never been checked since the early days. I do not know my anti CCP status. It was a fairly aggressive and erosive onset. I required both hips resurfaced within 6 years of onset at the age of 36 and have since had one TKR (along with various other ‘broken’ bits like my shoulder).

For the last 10 years (or maybe a bit less) I have been in ‘clinical remission’. My ESR and CRP have both been normal (I forget exact figures but they are at pre-RA levels). Interestingly (depending on your point of view!) my left knee deteriorated through this period of ‘remission’ to the point of needing it replaced at 45.

About 2-3 years ago I had a bit of a sudden urge to stop taking so many drugs, possibly as the realisation sank in that I had been on, for example, diclofenac for over 15 years. I did a ‘drug audit’ and assessed what exactly I thought I NEEDED to be on.

I am now down to dihydrocodeine (prescribed due to back problems) and Humira.

At my last Consultant’s appointment 6 months ago I raised the possibility of stopping taking Humira, not in a ‘demanding’ way, just curious what they would say. We decided that I would reduce the frequency to 4 weekly (from 2 weekly) for a year and then I will decide what to do next.

I had a nurse specialist app yesterday where it was again discussed, and all of your concerns (I would imagine) were discussed. My biggest fear obviously is that I will have a flare and find that Humira does not work when reintroduced. MTX was not my friend and everything else either did nothing or I had reactions to.

This is a particular concern because it took so long (and so many different drugs) to get it under control in the first place. I really, really don’t want to go there again if I can help it. But on the other hand there is the prospect that I might, just might be one of the lucky ones.

I would be interested to hear what you decided to do, if you have made a decision that is.

All the best.

🙏🏻

[helixhelix]

And nearly another new year....hope all's still going well for you.

[Lucy11 in reply to helixhelix]

Hello HH-super nice to hear from you. All is going well, knock on wood. Disease is in remission and have spread the infusions out further to every 8 weeks but still unsure if I’ll stop completely and remain only on MTX. Thanks so much for asking.

How are things going for you? I do hope you’re managing well and continuing to help others with your knowledge. Happiest of New Years to you and that wonderful pup of yours ❤️

[helixhelix in reply to Lucy11]

After a bumpy period, started a biologic (Enbrel) about 6 months ago. Now back in remission (happily) and am starting to think about reducing MTX a bit. Will see whether my rheum agrees with me in Jan.

Pup is happy too as gets longer walks again!

Drugs can and do work wonders for some of us.....

[Lucy11 in reply to helixhelix]

Super happy for you. I couldn’t agree more. The meds do help a lot of us.

I use to say that I’m lucky not to have any side effects from the drugs but I’ve come to find over the years that it’s more common than I thought-especially if you don’t smoke and take decent care of yourself. Of course, there are exceptions. There’s always exceptions but I wish I wasn’t so nervous about starting the meds in the first place. I was almost waiting for horrible side effects to happen that I almost willed them to come.

Anyway, really pleased for your remission. Long may it last.