Enbrel experience

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Boomer13
Boomer13 Member Posts: 1,931
edited 5. Oct 2015, 15:05 in Living with Arthritis archive
I've taken my 10th Enbrel injection this week which has been followed with a spine flare-up two days later. I am disappointed as I creep around the house in a worse-than-my-normal way. My elbows remain inflamed. They were my last afflicted-with-psa joints and are making up for it now, ouch. Feet, ankles and hands are their usual: not good. I gave up on my 20 min almost dailywalking routine which I have doggedly stuck with since last December. I just gave it up a few weeks ago, as I was just too fatigued and painful :oops: . My feet and ankles are just horrible and I think it must be from OA now, the pain is a steady presence now.

I can't say it's done nothing: I feel mentally more clear and have somewhat less fatigue than before I started it, which I'm very grateful for. Is it enough? No, but my previous bargain whispered to the gods of Rheumatic disease was "if I could just feel a little better/think more clearly that would do, I would put up with the pain" Now I'm there, it's not enough. I appreciate that Enbrel may have helped in this small way but not sure I'm getting my money's worth out of it. My cataract repaired eye remains inflamed and I'm on a long stint of steroid drops to hopefully deal with that. So, I still have evidence of persistent inflammation despite marvelous blood results.

Still, I don't want to go off Enbrel. I like my mind being clear :sunny: . At least I think this shows the mental fog I'm usually in has something to do with inflammation, not just the pain meds I take. These haven't changed, if anything, I've taken more lately. I think Humira may be the next med to try or Apremilast (Ortezla in the UK) I have to make up my mind. Next rheum visit is October first. Oh dear, another round of new side-effects.

Rheumatic disease, you are a frustrating beast.

Comments

  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Aww Anna you don't seem to be getting out the bit do you? as I have neither RA or PsA I cannot give any advice although having what they think is Sjogrens Syndrome which is affecting my muscles and currently on pred and meth I can wholly sympathise. I hope that if you do change to humira it helps with the joint pain etc. Good luck Anna it is lovely to see you back posting.xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I'm sorry everything's twanging so badly for you, Anna. Good news about the fog lifting but if this simply causes more agonising over which meds to take it's a tough one. You are in a similar boat to Tezz right now though she's on humira but undergoing the same sort of difficult decision time.

    I don't think I've heard of ortezia but, if you need to change, whichever you go on, I hope it helps.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Thank you both and, hello Marie it's lovely to "hear" your voice again too.

    I re-read my post and other than some bad writing (sorry :oops: ), it did help me think things through a little better. I'm leaning toward just staying on Enbrel for now and wait & see what happens. Maybe the joints will follow eventually?

    My back is startlingly painful and has set up like cement but despite this, I found myself whistling a little tune today. It has happened a couple of times in the past few days. I can tell you, it's been a few years since this happened. My memory is working better and, I want to pick up a book and read. It doesn't seem like it would wear me out now and I think I could actually follow a story. I don't want the pain I'm in but I like the mental effects. Maybe my bargain with the rheumatic gods to feel better, will be the best any of the drugs available can do anyway?

    It's really something that we all carry this huge burden of pain, joint dysfunction and feeling awful and yet there is no other way than to be optimistic about every next step we have to take.
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Sorry the enbrel isn't working too well but at least its cleared your mind so you can think about whats best for you,hope things get better soon. (((())))Mig
  • toady
    toady Member Posts: 2,278
    edited 30. Nov -1, 00:00
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    Just my two penn'orth - as someone who is probably coming off Enbrel & onto Humira. Sorry to hear it hasn't gone further in helping you (& oh, how familiar is the plea-bargaining for a little improvement!). 10 weeks does seem early days to know what its full effect might be; on the one hand I improved very quickly, but on the other, was told that further improvements were probable because you would be building on the early effects; which makes sense, ie your drug has less to do as time goes on, having tackled a bigger workload to begin with.

    It's been 4 years for me, but of which only the first was really what I call acceptable improvement, then slowly downhill.

    If it's of any help, my rheumy alleges that if you tolerate one anti-tnf that's an indicator that you will tolerate another, so I was told side-effects are unlikely if I shift to humira - believe that or take with a pinch of salt, but I'm happy to at least have that sporting chance.

    As far as your continued problems with mtx nausea, are you on injectable? Sorry I can't remember. Also out of interest are you sero-neg? I am, which makes me 'difficult' apparently. :lol: Not a surprise. :wink:

    Hope the mental effects of Enbrel do continue, reading is one thing that I still think can't be tiring, surely.. even while my eyes feel as though they are sliding down the page rather than crisply focusing left to right, let alone concentrating on the sense. :roll:

    October 1st for my next appt too, so virtual accompaniment might be tricky :lol: but I'm sure something could be sorted. Good luck with yours & hope the eye responds to the drops. xx
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Thanks for that brilliant post, Toady. Very good to know your experiences. Yes, I am sero-negative but not RA, PsA instead. I do appear to be in the difficult category too as I do not conform to the typical PsA patient, whatever she/he looks like. I wondered about the building up of improvement on Enbrel, maybe I just need to wait longer. My rheum made it sound like there would be immediate improvement.

    Very good to know about antiTNF side-effects and tolerance. I don't know if acceptable improvement is going to be enough. My hubby's already fed up with this drug and wants me to try something else. The mental improvements are there still but only if I'm not over-tired. If the goal is getting me back to a job, then I'm not there yet.

    Yes, it is injectable MTX that I take. Always have to take anti-nausea meds with it and for the following 24 hrs.

    Fingers crossed for us both on Oct 1st. Hoping for positive appointments.
  • toady
    toady Member Posts: 2,278
    edited 30. Nov -1, 00:00
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    Just a quick good luck for tomorrow Boomer, all the best with everything xx
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    I hope it went well today, Boomer. I know some people respond very quickly to biological DMARDs and I did on cimiza but I'd say it took nearly 6 months until I peaked on humira.

    Depending on your dose of MTX, it may need a boost. The majority of biological DMARD studies use MTX alongside the drug, so increasing it can improve things.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    Hello Boomer,

    I did respond quickly to enbrel but just as quickly reacted to it and came off it. It then took quite a while for the Humira replacement to do its job. It really is doing now and it's as good as I could have hoped for. I hope things pan out for you and yesterday was useful. (((()))) LV
    Hey little fighter, things will get brighter
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Thank you. The rheum appointment result was as I thought. Stay on Enbrel for anther three months, then come back for follow-up visit. He thought likely the stress of my Mum's death has spawned a huge flare that Enbrel is just barely keeping pace with. That goes along with my feeling as to what's happening. He thought there was less inflammation present in fingers and feet and he was able to bend my left wrist for the first time in the three(?) years I've been seeing him. It seems to be having some effect, yippee. The trip itself was rough, as usual. Too much walking and sitting. Sitting is causing unbearable back pain at the moment and walking does the same to hips, knees, ankles. So, I arrived home worn out and exhausted as expected. Part of the trip involves a bus-ride and this time it was standing-room-only. Standing for a long time, plus the moving bus and hanging on, provided a whole body work-out :skull: :horror-movie: I am rested up now and feeling more normal again. When I was seated on the bus, a lady beside me insisted that I get up when she wanted off the bus (there was room for her to get by with me slipping my legs side-ways) She said: "you just pop up and make it easier for me to get by" She wasn't impressed when I told her I don't "pop up" anymore and then slowly creaked myself upright and held up the bus while I got down the steps so she could get off. It was a situation where she judged me healthy because facially I look healthy and younger than my age, and I'm slim and look like I should be able to move. I shouldn't have been so accommodating but it's my nature, oh well. I was a little miffed, mostly at the attitude. So that's my not-so-funny, but funny story of the fall rheum-trip.

    Rheum also said to me when I finished updating him on how I was doing, that he had never had a patient in 14 years that had not responded to Enbrel. I really hope I'm not the first but I guess my wrist proves that I am responding. His is a large city practice affiliated with a university so I know he sees a large number of patients. That seemed odd to me. Surely there must be one or two, as there are on here?
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I think I'd consider that a good appointment. At least you're both singing from the same hymn sheet.

    As for the bus 'lady' - people do make assumptions. I guess there's much to be said for looking thoroughly disabled :roll:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Yes, I think it was a good appointment. I'm so soon past the side-effects of starting Enbrel and all the worry it caused that I didn't really want to start another new drug anyway. Waiting-and-seeing I am used to :) . Plus, if Enbrel is toning down what was a huge flare, then I'm happy not to have experienced the full force of that :monster: .

    The bus lady, well how could she have known anyway? I'm feeling a little unreasonable that I got miffed. Maybe it was more the rudeness of the way she said it that got me miffed. If I was getting off a bus at an early stop I think I would sit near a door so as not to inconvenience anyone by having to squeeze by.

    I dislike rudeness.