Etanercept: Hi, I have been learning a lot from this... - NRAS

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Etanercept

Mimipon profile image
9 Replies

Hi, I have been learning a lot from this post, thank you. I have a question on efficacy of Etanercept (biologic). I was diagnosed RA late August last year, was prescribed 15mg MTX (w/folic acid) & prednisone. Most symptoms in my hand (inflamed finger joint). In mid Sept, switched from MTX to Leflunomide 15mg plus 1.5 grams Sulfasalazine, as MTX was making me lethargic, My CPR was initially high at 70 but fell to 20 by late Sept, likely due to prednisone. I stopped prednisone, and waited for Leflunomide to kick in, while the symptoms spread from finger joint to feet/ankle. It took 1.5 months for it to kick in, and symptoms improved somewhat, CPR which rose to 45 in late Oct fell again to 20, but by December, symptoms deteriorated again. Rheumatologist said my RA is aggressive so drugs not containing it, so I was given Etanercept, which I began injecting from early January (50mg per week), while continuing Leflunomide & Sulfasalazine. In a few days, symptoms especially in my ankle improved, and my CPR fell to 3.6 from 27 at Dec. Not much side effect. I have been hopeful that I’ll continue to improve, but gradually, little pain & some tightness began to spread in my hands & feet, although still much better than 2 months ago (before biologic). So yesterday, I had a blood test & CPR slightly deteriorated to 4.4. Although it’s a small worsening. I was hoping for biologic Etanercept to make me improve smoothly, so disappointed. Question: Even with biologics which seemed to work brilliantly initially, my symptoms do not seem to be controlled. Does this mean that the disease is getting increasingly aggressive? Am I already developing antibody? I thought with these drugs, benefit is cumulative, so I will continue to improve. I’ve been taking this Etarnecept for 2 months now, and will see rheumatologist in a month. Sorry for a long post!!

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9 Replies
Runrig01 profile image
Runrig01

You haven’t been taking the Benepali long enough to know its true effect. It takes up to 6 months to see the full effect. In the early days I used it, I had relief for part of the week, then pains would increase again. As the months went on the good days increased. It won’t have reached its therapeutic peak yet. Research shows that although antibodies can occur with biologics, with Etanercept it’s extremely rare. The other point is the biologics slow progression, they don’t stop it unfortunately, and they are prescribed for that purpose rather than as a pain reliever. Some find they do get good relief, however if you have any damage to your joints as a result of the RA, then the biologics won’t help that pain, you would need regular analgesics for the mechanical pain. Given that your rheumatologist describes your RA as aggressive, it’s highly likely you have joint damage. Do it may be worth trying regular analgesics and see if that helps. I’ve been on Benepali and MTX for 8yrs, and both are still working.

helenlw7 profile image
helenlw7 in reply toRunrig01

I was on Methotrexate and Eteneracept for 10 years and they both worked well. Then I changed to Cimzia and it’s working.

Mimipon profile image
Mimipon in reply tohelenlw7

Thank you. When you started Etanercept, how long did it take to be effective? Was the improvement linear (I improved the first month, and next month deteriorating slightly)?

helenlw7 profile image
helenlw7 in reply toMimipon

It’s a long time since I started methotrexate but I think it took a while to work, and I’ve still have pain in my hands.

Mimipon profile image
Mimipon in reply toRunrig01

Thank you, helpful suggestions. I’m quite new (7 months) to RA, and I took XRay & the doctor said I don’t have joint damage yet, so likely not mechanical pain. I feel like the tightness is spreading to other fingers/toes, but as you say, the drug just slows progression rather than stopping it.

Haz58 profile image
Haz58

Have you had a steroid jab to tied you over until it kicks in properly? I think it took 3- 4 months before I got a lot of relief. It works for me but I've had a few bugs and not been able to have it consistently for a couple of months as I keep getting put on antibiotics. That's winter bugs for you 🙄

Blackwitch profile image
Blackwitch in reply toHaz58

Steroid jabs were the only thing that worked for me, consistently. Everything I took had side effects and the Depo-Medrone meant I could have some social life. Unfortunately, my new Rheumatologist said that steroid jabs were no longer given so I’m now on no medication at all. Consequently. I have had such painful hands, knees, hips and ankles, I’ve been mostly housebound. I also have continuous back pain since it turned out that following failed back surgery in 2020, I have a huge painful lump on my back caused by S-shaped scoliosis with a rotation. My GP says scoliosis doesn’t cause pain and the rheumatology nurse has referred me to the pain clinic (8th time)! I agreed to just see a Pain Consultant and be properly examined and he agreed to a spine MRI which I had two weeks ago, with no results yet. I take 10ml of morphine sulphate with 2 paracetamol to help me get out of bed, 2 paracetamol about 2pm, then 2 more paracetamol with a Diazepam at night. My Etanercept injections did nothing but give me a very itchy rash so they were stopped by rheumatology and I was told my swollen and sore hands were not inflamed because they were not red. I don’t think she believed me when I said they were red until I got outside and they turned white. She said it’s osteoarthritis and fibromyalgia.

When I was first diagnosed, it was Sero-Positive Rheumatoid Arthritis non-erosive and I was bombarded with all the usual drugs. Could it be that something actually worked? Each time, I was given a steroid jab until the new drug kicked in, then once it did, all the awful side effects kicked in too. The other diagnoses were added - Secondary Sjögren’s, Fibromyalgia, Funtional Neurological Disorder and eventually after my back collapsed in 2020, ME/CFS. I think I’m just unlucky. I’ve lost nearly 4 inches in height, can’t stand up straight or my legs go dead and I have to use a wheelchair when/if I go out. I’m finding it very hard as my GP who never sees me thinks I’m cured.

Has anyone been told they’re in remission?

Sorry for ranting again. Nic xx

MandiS profile image
MandiS

I’ve been on Entanercept 8 years I still ached a little and was never completely fine but if and when I flared it was bearable. Over the last year I have been flaring 1-2 times a week so I’m now waiting for Ritixumab. The efficacy wears off , it does however control symptoms but does take time to kick in. I started to see noticeable results after about 3 months, and it served me pretty well for several years but a side affect was lots of sinus infections. I’m sad that it’s stopped working because I thought I would be able to stay on it for life. Good luck I’m sure it will work for you give it some time. You may be like me not 100% symptom free but it does make a difference.

Angels54 profile image
Angels54

it usually says it kicks up to 3 months, I found this biological good for me , stopped working after two years ago, now on Benapali some drugs didn’t agree with me , sadly it’s trial and error , it can be frustrating, you should pick up with what you on , if not happy go back and discuss it with Rhuemy staff .👍

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