Wean off Enbrel

So… has anyone ever pulled this off? put PsA in remission and have it stay gone??

Quick background. At the ripe ol’ age of 30 I began my journey. I was a collegiate athlete and avid weight lifter. Also could put down about any food in site and loved to eat!

I refused to accept my diagnosis… went years trying every diet under the sun, including just not eating anything for 10 days. (water fast)

At my worst, I could not walk. Would have major searing pain in my legs that my wife would have to rub just to try and keep me comfortable. I did considerable damage to my fingers and toes before finally feeling it move into my neck area, which freaked me out and got me onto Enbrel…

I’m now 39 and for the last 2 years have basically been my old self again. I was prescribed Enbrel once a week (50 ml) and methotrexate too. (I didn’t stay on that long, maybe a couple months, then cut that out on my own…)

I VERY SLOWLY have added days between shots, I am now up to 14 days between shots. At first, I could feel things creeping back around 11-12 days but I pushed pass (slowly) and today realized I’m hitting my 14th day and feel I could go longer.

I’ve settled on a mostly keto diet… i panic and eat sugar here and there but can ‘feel it’ immediately. My goal is to get to 1 50 ml shot per month of Enbrel. If I can get there, I’ll slowly keep adding more. I’m just so freaked out by any possible side effects down the road, as I’m only in my 30’s I’d think by the time I’m in my 60’s the odds of complication will be high…

Just wondering if there are any success stories out there, or if I’m only dreaming =)

Thanks all.

Randy
Michigan, USA.

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It’s great to hear that you’re doing so well. I would not go off a med like this on my own. You can wind up making that biologic and similar biologics not work. Also, be aware that damage can occur even when you’re feeling okay. I would encourage you to consult with your doctor.

I’ve been on meds since my mid thirties and it took a few years to get things under control. You couldn’t pay me enough to take me off meds. I’m still experiencing damage slowly but surely, and that’s with decent control. I’m 4 7 now and hoping to stay on meds that work the rest of my life.

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I’d second what Stoney said. I understand your concern, but the biologics work in mysterious ways - so mysterious in fact, that going off them for a short period is (at least anecdotally) known to cause resistance and/or autoimmunity for some people, so talk to your doc about this.

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Ditto what the others have said. The biologics are NOT for pain control (though that is often a nice benefit) they are to control permanent joint damage.

My rheumy told me that we can consider weaning me off Humira when and if I get back to where I was. Naturally I was not ‘where I was’ by the time I saw her at the end of last month.

I’d had, I guess, 4 very good months, preceded by a pretty much okay year. Now, to be honest, I’m hurting all over, knackered and fed up and have some swelling which if very unusual these days. Otherwise everything is rosy lol.

I once tried doing without Mtx, because I had to. Within weeks I was covered in psoriasis. Re-started 9 months later and the psoriasis went very quickly indeed.

I’m thinking the meds are probably for life, for me, but have an open mind. Tread carefully.

Remember the life of enbrel in your body is 15 days. Incidentally for humira it’s 70 days. Probably that’s why enbrel (and its biosimilars) are prescribed weekly and humira (and its biosimilars) are prescribed once every two weeks. Perhaps you’re just hitting the right time to reload it for you.

But I second what everyone else says. Biologics are truly complex drugs and I prefer to have my biosimilar of it working well so I take it once a week. However due to other issues I had to wait over 10 days between doses for a couple of weeks and never saw anything change with me doing that. But once those issues were sorted out, I was very happy to go back to once a week.

Those other issues demanded I stop taking sulfasalazine with it permanently. And now nearly two months in, I’m doing fabulously. This far at least. Rheumy is worried long term just my biosimilar on its own won’t ‘cut’ it so we’re monitoring it very carefully. So as @Sybil says tread carefully…

The difference is though I think it’s absolutely amazing to be on a drug that can just on its own make me feel so damned good. I wouldn’t be wanting to risk not feeling this good for all the tea in China. So I really do have the utmost respect for this little pen living in my fridge which I use once a week. It’s incredibly precious to me and it would take an enormous sledgehammer to persuade me otherwise.

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I have not been officially diagnosed with PSA but I know I have it. Joint pain in bilateral hands and feet, elbows and shoulders. Diagnosed with Uveitis last February, which the rheumatologist had told me if that happened than it probably was PSA and to call him immediately to start a biologic. I didn’t because I wasn’t ready to go there yet. Tried steroid drops for my eyes for 2 months with no relief and decided to try an AIP diet as a last resort. My feet were getting worse. Everything was getting worse.

I’ve been on this diet since May 1 of last year and I am 80-90% better. I’m sure I have joint damage from being undiagnosed for so long but I’ll take that pain over where I was. It’s been a long hard year trying to heal my body with food but I am convinced that is why I feel as good as I do.

The AIP (auto immune protocol) diet consists of grass fed and/or pasture raised meat and wild caught fish, veggies and fruit. No processed foods, sugar, dairy, grains like oats or rice or quinoa because they can mimic gluten. It has not been an easy transition and I spend so much time in the kitchen, but it has given me my life back and I am drug free.

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Have also resorted to auto immune keto style diet with fasting off and on since october, only still have dairy. Results have been considerable, but still continue w psa treatment methotrexate and cosentyx. Have lost over forty pounds, only about twelve to go, but more importantly this diet has reduced inflammation .

interesting thread to read. I’ve actually not thought much about my PSA in recent years. Living in Canada it was so bad I couldn’t walk or use my hands much plus it affected my spine. I moved to Taiwan, caught H1N5 influenza in my second month here, developed a severe lung infection and had to stop methotrexate and Enbrel and I never went back. living in a semi-tropical climate my symptoms have been very mild and usually arise in “winter” (13-25 degrees C) - occasional pain and swelling in my vertebrae or hand that resolves quickly. Looking at moving back to a more temperate climate soon and very nervous about what will happen since I didn’t “put” PSA into remission, rather it was “gifted” to me by the climate. I tend to experience very strong side effects from many of the pharmaceuticals I take and methotrexate and Enbrel both caused a lot of suffering for me. the idea of going back on them makes me want to cry

Randy, I am all for getting off medications, but the problem is these medications take time to build up in your body and time to leave … you feel okay for a while because you are still reaping the rewards, but then they will take longer to build up again. While one of the bonuses is you feel better, that is not to goal…the goal is to limit the destruction to the joints. I have heard many individuals swear by THC for pain, and I am sure it helps, but THC won’t stop destruction to joints …I would talk to your rheumatologist.

Gosh, I have never heard of a rheumatologist thinking of weaning off just because you feel better…usually, if you find something that works, you stay on until it no longer works or blood tests show liver is having issues.

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I agree with much of what you say kwtawalker and I’m sure my rheumy would too. There has been slow deterioration of my joints since I was diagnosed with PsA in 2012 and the bottom line is to assume that it would have happened more quickly without the meds. Medication is indeed primarily about slowing joint destruction.

However I have been told in the past that I was ‘close to remission’ and once the ‘R’ word has been mentioned, it is worth thinking about what it might mean and discussing options with your rheumy. But going by how 2019 has panned out so far, the ‘R’ word is a pipe dream.

To complicate matters, I’ve recently been diagnosed with another condition that might better explain the particular pattern / nature of my joint damage. There’s going to be a long road to understanding all this. But it could be that the PsA has gone quiet and this other thing is to blame for much of the damage.

Anyway, I’d never advocate dropping the meds one fine day just because we feel like it or ‘feel better’ which, as you say, is not the best indicator of disease activity. It’s a difficult subject but remission, tapering off etc. have been mentioned to me by some very good rheumatologists so I’m not going to pretend otherwise. It all needs careful consideration. Very careful consideration, believe me!

So lets talk about what happens when youtake a medication holiday…

In October I had my routine chest x-rays (I have a small aortic annie that we are watching My thoracic spine aside from some damage from a couple of fractured vertebrae 20 or so years ago was relativley normal for my age. Not long after I was diagnosed with influenza and missed a Simponi Aria infusion ) ONE keep that in mind ONE. Jan 16th I had another chest series to make sure what I thought was Pleurisy was indeed pleurisy and not the annie taking a nasty turn. It was. But that chest series noted some significant changes in the T-spine. In less than two months I developed a number of Syndesmophytes. (I have the spondylitis version of PsA in addition to organ involvement) no pain no symptoms figured s*** happens. Yesterday I had symptoms and had a T Spine MRI. This morning the results. In addition to a few more Syndesmophytes I have one that developed a wild hair and causing a nerve impingement (thus the symptoms) and some evident ankylosis (fusion) More appointment with both the surgical and non-surgical spine center, a brace fitting, a come to Jesus meeting with my cardiologist (i take blood thinners from PsA related stroke and can’t take any NSAIDs) In short one hell of a mess.

FWIW I would suggest if a missed dose of bios can cause this kind of mess (and both Rheumies say it did) I would suggest “wening” because you are feeling better (because your meds are working is a very BAD idea…

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Keep in mind that “remission” is a fallacy and, in general, is no longer used as a medical term.

The correct term is N.E.D – No Evidence of (active) Disease

The fact that there is no evidence of active disease does not mean cured, does not mean gone, does not mean you should change your daily/supportive medications and routine – it simply means that your disease state is current not as active as it was.

As a general rule there is no cure for chronic conditions, only control.

azurelle

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My old rheumy, who was a total star, told me early on that ‘the aim is remission’. He may have been using an inaccurate term for my benefit, or maybe the new one wasn’t in current use then, I’ve heard of N.E.D. recently too. In any case, I understood that he didn’t mean ‘cure’, I think most of us people with PsA are all too aware that there is no cure. I doubt that he aimed to stop all medication, but was open to the idea of reducing some of them one sunny day. I’ll never know 'cos it didn’t happen.

Occasionally people here do stop meds with their rheumy’s blessing, and as I recall from those who’ve reported back, they end up starting them again.

My current rheumy is one of the leading PsA specialists in the UK, possibly the leading specialist. I’m glad she was willing to at least discuss this topic with me, I hate no-go areas with any hint of ‘don’t worry your little head about that’. Discussion’s important with a lifelong condition.

You’ve gone quiet @Gater! How are you doing? Maybe you’re inclined to do things your own way … do you have a rheumy you can really trust? Someone who will look out for you whatever you do? My fear is that PsA does not stop even when the drugs are working, it still progresses, just very slowly, ideally. Complete lack of disease controlling drugs is likely to speed up progression but it may not be obvious day to day. There can come a point when little bits of pieces of damage become one big problem, as tntlamb’s post illustrates. If I were to ever reduce my medication I’d want regular monitoring at the very, very least.

I’m old now I admit … if I was 30 I’d try to keep my eye on the joyous prospect of having a saggy old body down the line that was at least not totally falling apart at the seams as a result of PsA. Difficult to think that way even at 39 I guess … I am a very active person, I have to do stuff to keep sane. Being alive hurts more as you get older but I think I can just about distinguish the daily pain and difficulty that PsA has graciously added to the mix, I would not recommend risking even more of that.

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Actually that isn’t exactly true. NED is a term generally applied to cancer treatment and is based on phsical evidence such as PET, MRI etc. It replace the term Complete Remission, as that was too often confused. Remission is considered a temporary condition where as NED expresses hope that at the present time the absence of evidence of the disease precludes the need of further treatment until evidence of disease reappears.

My daughter for example is NED in regards to her uterine Cancer after surgery chemo and radiation (the last two an abundance of caution as she was NED after the surgery.) She in the oncology center regular as clockwork to make sure she stays that way.

The purpose of PsA treatment is much the same. To maintain remission with treatment (the level and agressiveness of treatment may change) Hard to say a PsA patient is EVER NED when their frankly is no way to determine evididnce of disease until AFTER the disease has done its dirty work.

Hi @Gater.

I’m in agreement with the others about the risk of weaning off Enbrel. Don’t forget how terrible your symptoms were prior to starting Enbrel! You mentioned at worst you couldn’t walk, the pain was so bad. Then your neck started hurting. If I were you I’d take a walk down memory lane and remind myself of the great benefits of Enbrel. You surely don’t want to be in that much pain again, do you?

I also think about the health risks of taking a biologic (I’ve been on Enbrel 4.5 years and I’m 65). I have chronic low white blood cells (leukopenia) which I’m sure is a result of taking Enbrel. But, some of the other health problems I have would probably be worse if not for Enbrel. I was 60 when I started taking Enbrel and at that time I had the habit of saying I didn’t think I’d make it to my 70th birthday (the pain made me feel so old, weak and unhealthy). Now, despite some other health problems (bad circulation, etc.) which are unrelated to PsA or Enbrel because family members have the same problems and they don’t have PsA, I’m hopeful I’ll make it beyond 70.

I just couldn’t imagine stopping Enbrel and possibly ending up with those horrible PsA symptoms again.

Good luck, Gater, whatever you decide to do!

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From the beginning for me diet was a main focus. It took me a long time to get over the cravings and slipping back into eating something I shouldn’t! I’ve become so sensitive now to foods that I can literally feel the pain develop in my hands or feet almost immediately when I eat something I shouldn’t. I too plan to practice and practice and live a new life under a new way of eating. I am not perfect at it, but am quite certain it has a major effect on my PsA. My intent is, as I become more locked in and eating the way I should, to continue the weaning process. I’ve read many comments suggesting otherwise and read them with the utmost respect toward others path they chose to take. Best of luck to you!

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