Is there anyone on here who is just on Enbrel, and no other medications except occasional nsaids?
Is it normal when you are Enbrel to have occasional breakthrough disease activity or are you supposed to be completely symptom free, all the time?
I am having this occasional muted disease activity, where I know my body is in a flare, I can feel the inflammation, but its muted/dampened because I am on Enbrel, and I know it would be a full flare if I wasn't on the medications.
I dont know if this is normal for biologics.
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Hobbits
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All of the drugs we take for RA it is hoped, will 'damp down' the active inflammation. How much varies from person to person. Enbrel didn't work for me, for others it's great.
I've been on Humira for a good few years, and would consider that it works very well, but I still have painful hands and wrists and still have 'bad days' where I just struggle to get going and keep going.
I've been in clinical remission for virtually the entire time I've been on Humira, yet my wrist still has a swollen area that sometimes increases in size.
I, personally, think that total 100% remission is somewhat unlikely, whatever the test results show. There's still something going on, or my wrist wouldn't be swollen. Also during this time I started to develop a vagus knee deformity which ultimately required a total knee replacement. Yet I was in 'clinical remission' at the time.
You don't say how long you've been on Enbrel but could it still be improving things?
Unfortunately there is no switch that simply turns off the disease, as said it just damps it down.
Personally I'd take the 95% improvement I have any day over the misery of what went before.
Thanks for the reply Ade. I been on Enbrel for almost two years. For the first year Enbrel has completely cured me of disease activity, the only side effect I was having was hair loss, but no one could tell me if it was from the medicine or not. My bloods have shown like a normal person since Enbrel, even though my actual disease was very high on the RASS scale for disease activity, functional impairment and
physical damage. Enbrel has put me back to 'normal'.....However this past year, since about January, I am having days where my RA is active, not a full on flare, like its dampened and muted, but enough to be very uncomfortable and stop me from doing certain things, and very bad fatigue. Then other days I am perfectly fine. The breakthrough days are happening more often. Its like the RA is figuring out how to get around the Enbrel, and I am scared my medicine may be failing, I even thought maybe I had a bad batch of Enbrel..... I do not want to have to change biologics, I had a bad allergic reaction to Humira, which was my first biologic before Enbrel. Changing a biologic takes months and months and months to get approval, and I already know I would be put on Steroids in the meantime. I have had to be on steroids when waiting for Enbrel after my allergic reaction to Humira....it not a good thing, my anxiety is now bad just thinking about it.
I guess I just need to know that this is normal for people on a biologic for most people to still have some disease activity. That this break through thing is normal. Im questioning because as I mentioned the first year on Enbrel was like I was basically cured, now its changing....
I don't know with Enbrel but for me with Humira it's been pretty consistent.
If your symptoms have increased slightly then maybe you should discuss it with your rheumy nurse? If, as you fear, you will have to change and there is a gap, wouldn't that be better now rather than later if there was a possibility you could get worse in the meantime? Also they would be able to tell you if it was normal or if there was a chance you'd need to swap (or maybe add in another DMARD).
When I have changed biologics before (twice) I didn have to wait for another funding application, don't know if that's changed in the past 7 years or so. I was just swapped from one to another as far as I remember after any relevant tests had been done.
I was on Humira for 14 months when I suffered a massive flare so was changed to Embrel in February. I'm still getting niggling pain sometimes worse than others and I've had at least 6 steroid injections since February. My rheumatologist seems to think that Enbrel agrees with me and disease activity will eventually settle. Clemmie
When I was on Enbrel, I was also on 22.5mg Methotrexate to 'turbo-boost' the Enbrel. As well as a low dose of Prednisilone . In one sense it worked well but I kept getting chest infections, so I'm now on Rituximab and just had an infusion today. I accepted the bad days ( well, sort of!) and tried to learn from them. I've also had to accept that however well the RA is controlled, I'm not getting any younger!
I remind myself how much better I am than three years ago when my whole body was rigid with pain and inflammation and I thought I would never be able to move.
Hello. I was on Enbrel and mtx. I found that although it was very effective there will always be times when you can feel the disease. The drugs control the disease but sometimes it can't always. I find that when I've been pushing myself too much, am stressed , tired or have a cold the disease becomes a bit stronger. I learned to accept I will never ever be totally symptom free. Take care.
I think it's working because I am functioning but I wouldn't say I am symptom free by any stretch.
Mx
Hi Hobbits,
I believe you are not in the UK? Canada? it sounds as if it is easier to switch biologics here than where you are but if you have been well controlled and are now experiencing more bad days it could be that the Enbrel is not working so well for you. I think as Ade_Bell says, if this is the case better to talk to your rheumatology team now to discuss options. I don't know the system in Canada for biologics but in the UK Enbrel is often given with another standard DMARD such as MTX.
Hi beverley: Yes I live in Canada! I will try to explain how the system works here, for those who may be interested to know.
Different insurance carriers have different rules, here is mine;
I have a combination of private insurance and the Trillium Drug Plan which is a government plan in which your deductible is based on your family income. Many can not even afford this Trillium plan because the deductible is so much, (pretty ridiculous if you ask me) my families deductible is over $5,350. per year, and then there are private insurance premiums. Because biologics are so expensive (my Enbrel is $22,539.84 per year) I need to have approval for each separate one, you are not automatically approved for the next one. I also have to have my Rheumy send a letter requesting for continued coverage on my insurances anniversary date each calendar year, even if I am on the same drug and nothing changed. I also can not start a new treatment with out first receiving pre-approval from the insurance company. The private insurance is always used first, until the claims reach the ceiling, then the Trillium kicks in. The whole process involves my rheumy doing a crap-ton of paperwork and submitting it to both entities. It takes as long as it takes, the wheels at my insurance company are particularly slow, not all biologics are covered, and the ones covered are only covered for certain conditions, for example: even though Humira is prescribed for ulcerative colitis, my private insurance will not cover it for that condition, but they will cover it if you have RA.... when I was originally prescribed Humira, the insurance personally called me and asked what I was taking the drug for, even though my Rheumy had already submitted an application and they knew what it was for.
I have an upcoming appointment in October, I hope when I see him that he tells me that these 'break through' flares are normal, and everything is ok. I dont know how much disease activity is acceptable before they decide yours is not working, I
I have failed all the DMARDS, mostly due to ineffective at highest dose or severe side effects.
What really has me terrified, is if my Enbrel is failing, how bad will I get before something else that works is found. I know the condition of my body without medication. Its not good.
...I have to be able to work, to pay for my insurance, and my financial obligations, if I dont I am pretty much screwed I think, not working is not an option. It feels like my life is a house of cards, waiting for RA to blow it down.
We do not have Rheumy nurses here (I wish we did) I deal directly with a Rheumatologist, he generally does not answer medical questions over the phone without seeing you
I am generally a very positive person, but just so overwhelmed with worry, these 'dampened flares' seem to be coming more often and lasting longer, my fatigue has returned and its wiping me out, my gut tells me that my Enbrel is starting not to work anymore. I want to be wrong.
much more complicated (and expensive) for you. In the UK people have to satisfy the NICE (National Institute of Health and Care Excellence) guidelines to go onto biologic drugs but once those have been satisfied then people can have them on the NHS and can try more than one. Hope things work out for you and that you don't need to change.
Hello everyone. I've been on Enbrel + MTX for 4 years and it would seem that over time the body builds some form of resistance to the effects of the drug. I have been having regular breakthroughs that I have been able to control with short bursts of oral prednisolone (steroids) and a cocktail of infrequent painkillers. I also had two episodes of swollen lymph nodes in my neck which gave me concern re Non Hodgkins Lymphoma, but my bloods show no decrease in blood cells. As a precaution I have been swapped to Benepali a bio similar made by Biogen...And also to reduce costs to the Payor as well. Fingers crossed it works!!!
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