Hello all,I've had Juvenile AS +RA and occasional flares of uveitis since 2010. Primarily lower back and hip joints.
I've been on Humira (once a month 40mg) for about 5 years and have had no issues with flexibility or pain. My blood work is always normal. I have not been taking Methotrexate since 2012 . Is it a bad idea? Do I need to worry about long term effects of not using MTX?
Thank you!
I can’t answer your question I’m afraid but your post caught my eye due to my own diagnosis aged 17 of ADULT ONSET STILLS DISEASE, which is a form of JA. I will be 61 this year and it’s always useful to learn about other people’s conditions. I’m sure another reader will give you the info you end. Take care.
why would you feel you need methotrexate if the humira is working? Do you think your disease is active?
It has been explained to me that Methotrexate, as a general immune dampening agent, decreases your body's tendency to make antibodies against the biologic medications. It is thought that this may increase the efficacy of biologic medications and hopefully prolong the length of time that the drug is effective. Apparently the reason many biologics work well and then gradually become ineffective is due to your body's increasing neutralization of the proteins in the biologic. Seems to make sense, we already have a primed, overactive immune system to begin with, and when we're not attacking our own tissues, we're busy trying to attack any treatment for the disease. Methotrexate hopefully quiets that response. Have I made this even more confusing?
That is very interesting and not confusing. Thanks!👍😃
I was on leflunomide while on enbrel and humira and still built up antibodies and they both stopped working.
I have a friend who is only on enbrel (I can’t remember the name of the bio similar one she’s now on). If your rheumatologist isn’t telling you to take it then I wouldn’t worry about it.
I am in both MTX and benepali. I have missed several weeks due to a chronic wound getting infected. I suspect I’m going to be told to hold both till the wound has healed, as 8 months on it still isn’t healed. I too am concerned re developing antibodies to my biologic, although I am on MTX. I found several interesting articles, which reassured me as Etanercept anti drug antibodies only occurs in up to 13% of patients. Humira was 33%. Of you are showing signs of it being less effective they may do the blood test to check for antibodies. They tend to shorten the half life, so clear your system faster, meaning your pain increases before your next injection is due. Here’s the articles I found, they may help 🤗
The evidence for this is sparse and rather confusing. I think many rheumatologists err on the side of caution and suggest methotrexate should be continued but there seem little hard evidence that this makes any difference to whether you continue to respond to the damping down effect on your immune system of the specific biological treatment you are on.
If your rheumatology team don't advise taking a DMARD (disease modifying anti-arthritis drug), then I would, in the present state of knowledge, follow their advice.
It is infuriating for those who are affected that a small proportion of people become resistant to their medication which previously worked and then have to try another one, not knowing if it will work. But no-one seems to understand why that happens yet - that I've found anyway. Anyone else found any research that helps us understand?
I've been on Cimzia for about 1.5 years and am currently in remission as a result. I was on methotrexate beforehand and the side effects were pretty grim - hair falling out, sickness, upset stomach etc. It also impacted my blood work and I was neutropenic every 2 months or so. It's quite a heavy drug, whereas I have had no side effects with biologics. Everyone is different though so there's no harm giving it a go if that's best for you, just wanted to share my experience. I would have thought if you have one drug that is worked well then you'd be fine to not add another?
You should discuss this with rheumatology and I definitely wouldn't want to influence you, I can only tell you my experience. Humira worked brilliantly for my peripheral joint symptoms (not my lower back/hips) for 9 months and then stopped working. I wasn't taking methotrexate.
I was then put on Cosentyx and shortly after that added methotrexate and it's worked longer than both previous biologics. But it might be that it's just the right biologic for me as it helps my AS-type symptoms as well as peripheral joint symptoms, whereas Humira and etanercept never touched the back pain.
The reason we take mtx alongside humira, my consultant said, is to stop the body building up resistance and make it work better. I've had no flare ups since I started them together 9 years ago. Before that I spent 15 years onmtx, sulphasalazine and hydroxychloroquine together x
Thank you all for your insights! I must confess that I'm avoiding MTX against my rheumatologist's advice. I just can't take tablets on a regular basis. I understand that it lowers resistance build up towards biologics including humira. In the past, with MTX I've had to move from remicade to enbril and then to humira. But for the last 5 years, I haven't developed any reactions. I'm 27 and don't think humira is going to cause any issues. I'm just worried that later on, I'll regret it.
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