Enbrel & Fibromyagia...

trisharay
trisharay Member Posts: 10
edited 27. Feb 2012, 13:58 in Living with Arthritis archive
Hi everyone,
I went on enbrel in november last year. From the start I experienced more pain than I'd had in a while, and not only joint pain....
last visit to my rheumy he told me he suspected that I have now developed fibromyalgia as well. Put me on Lyrica, 75mg, which hasn't helped at all. Been on this over a month now, been on enbrel for 15 weeks...
The pain is becoming unbearable, no pain killers are helping, tried everything from paracetamol to tramadol, with all the anti- inflammatories inbetween... The pain is wearing me out and there is just no predictability in my life. got a bit more energy from the enbrel but a whole lot of pain. Doc added Imuran as I am unable to take mtx but I immediately got sores on my body so discontinued those.
Never know which part of my body is going to hurt tomorrow. At least before the enbrel it was the usual suspects. Now I'm even woken in the middle of the night with an ache somewhere, especially lower back or a hip, both never bothered me before.
Also the enbrel has never stayed in my body for the whole week. By day 5 I can feel that it's out of my system as my pain decreases and my energy drops. My nurse says she doesn't think it would be possible to inject it more frequently, that's why I was prescribed Imuran.
I am not sure if the enbrel is causing the extra pain as I never had it before going onto enbrel, I experienced similar pain when I had a humira shot, but only had one as I had a severe reaction to that.
Yes, I do have fibromyalgia symptoms, but before going onto enbrel, I did not. My health has deteriorated rapidly since starting enbrel.
Has anyone got any experience of enbrel or fibromyalgia that could shed some light for me??? Would be greatly appreciated. :?
Many thanks
Tricia :wink:

Comments

  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Trish, i feel so sorry for you and know how your feeling. it can be a bitch at times and coping with that pain 24/7 drives you mad. I also know how it feels when meds cause further problems. I have RA PA and Fibromalgia its not just the pain but also what it does to you mentaly I faild on Enbrel i got pneumonia and was really bad. I failed most things went through all the anti tnfs now on rituximab but its affecting my lugs. its such a pitty because its the best Med i have had up to date. Wish i had a magic wand for you trish and wanted you to know i understand how ill you are. I do hope your getting plenty of support from family. Do take care and ill keep an eye out for you.
    Colin
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh dear, poor you. I too had enbrel for a while and the pain remained, and although the humira I take now gives wonderful blood results (which show it's controlling my PsA) pain levels have increased thanks to the OA in my knees and ankles and stuff hurts all the time (though luckily it's all in the usual places!) I think the fibro coming along at the same time was co-incidental and the enbrel won't have any effect on that. What are your bloods showing? If the arthritis is under control then they should be fine, but I believe there is not much to be done for fibro. I hope you are able to find some more effective pain relief soon and I wish you well. DD
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Tricia

    I am so very sorry that things are so difficult for you.

    Given that these awful muscle pains have only started since you began Enbrel, it seems to me that the docs ought to be at least considering an Enbrel connection before trying to diagnose you with something else as well! I had all sorts of problems when I was taking Humira and the docs insisted the Humira wasn't the cause, and instead wanted to try to diagnose me with a whole host of other unrealted health problems. But, guess what? When the consultant finally, reluctantly, agreed that I should stop the Humira for a while - most of these weird and wonderful non-arthritis problems disappeared and I was then able to get started on another biologic which, so far, has been fine for me.

    Would you consider speaking to the nurse/consultant about stopping the Enbrel for a short while to see if the muscle pain improves - because that's the only way you are going to find out for certain.

    I really do feel for you Tricia and hope that you can find some answers soon.

    Love Tillyxxx
  • trisharay
    trisharay Member Posts: 10
    edited 30. Nov -1, 00:00
    :) Thank you all for your support and advice.
    I do think that maybe the enbrel could be causing the pain they're diagnosing as fibro cos I did have similar pain when I had a humira shot and no pain while I was waiting for my system to clear before going on enbrel. In fact, I had very little pain while I was on no meds besides the maintenance dose of prednisalone.
    I have just become so confused lately, all the pain meds, lack of sleep, pain, etc. I'm usually a happy positive person but lately I'm almost too tired to smile...
    Really appreciate the advice and support,
    regards,
    Trisha :)
  • maryow
    maryow Member Posts: 9
    edited 30. Nov -1, 00:00
    I didn't have this problem with enbrel but golimumab (Simponi) made my RA and fatigue worse immediatley and I developed drug induced lupus. It might be worth asking if you can be tested for this. I was taken off golimumab after two months.

    Mary
  • trisharay
    trisharay Member Posts: 10
    edited 30. Nov -1, 00:00
    Thanks Mary,
    I shall definately look into that. I'm actually going out of my mind with pain now. It hurts so much that I feel nauseous when I move. :(
    Trisha xx
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    Hi Trish

    can't help really other than to agree with the others and to sympathise with you.

    l think it may be time for you to have a good chat with your rhuemy about how you are feeling and try to get them to listen to what YOU think is happening.

    I think l may be right in thinking lyrica can be very effective for some for fibro, but could your dose maybe go higher????

    Love

    Toni xxx