Bad Flare

Struggling to type this, going through a really bad flare in arms, shoulder, hands knees and hip, which came out of nowhere last night, hoping it has peaked, this is the worst I have ever felt in 2 years, currently on nothing but Hydroxychloriquine due to low platelet count so missing MTX and Sulph, and waiting on starting Enbrel, really hope Enbrel kicks in fast for me, as this is as bad as it gets for me, really struggling :(, any help or words about Enbrel from anyone? time it worked for them etc

21 Replies

  • That's not good Iain. Sorry your flaring, it's really awful when you are so sore and you just can't think of anything else. I had Enbrel , easy to use, not too painful and did help xx

  • Hi Allanah I am hoping it helps..Im not good x

  • Keep strong my love, it will pass. It feels awfully lonely when you are so sore I think but we are here in spirit with you x take those painkillers regularly and get the hot/ cold packs out. Will the rheumies give u a steroid jab if u tell them of your flare x rest up today x

  • Poor you. I too am waiting to start Embral (two weeks, they say) and have been greatly encouraged by responses on this forum saying that it has worked pretty quickly for them. My rheumatologist said that some people even notice a difference after the first injection. I'm on a course of Prednisilone, as well as MTX, sulph and hydroxychloroquine , to tied me over. I hope your flare has subsided.

  • 2 weeks they said for me too Jora..thats has been 3 now and still waiting for the home visit from the nurse..still flaring x

  • Hi there, I'm always eager to tell people the benefits of Enbrel (Etanercept), I was put on Enbrel a year ago after Methotrexate was giving me too many bad side effects.

    It's made me enjoy life again and I've been pain free since the second injection really, I sincerely hope it's the same for you, it's even helped my chronic urticaria and my flare ups are hardly noticeable.

    I do hope it works for you and i've not had any side effects with it so far, good luck.

  • Jezebel53 that sounds amazing..I am hoping I have the same effects it has had for you..glad to hear you are doing well..I have been what seems flaring since mid January don't think I can take anymore..its heartening to hear success stories and pray its the same for me

  • Enbrel has worked brilliantly for me for several years. For me it was a noticeable but gradual improvement over the weeks until I realized that the effects were lasting between injections. I rarely need anti- inflammatories or painkillers now. Hope it works as well for you. Best wishes

  • Excellent Judeth I am at the stage where any improvement even the smallest would be most welcome..thanks for the wishes

  • I hope the enbrel works for you Iain . I'm really in agony at the moment ,I know if I ring up they'll up the MTX, but I know it's not working. It seems we have to suffer and suffer and have to go the hydroxychloriquine /MTX route as a matter of course before our individual needs are looked at. All down to money.

  • Sorry to hear you are in pain aswell..they upped my mtx 5 weeks ago and my platelets went low but not that bad..I was feeling the benefits of more of I am on nothing untill my bloods go back up other than hydroxychloriquine...I have it in my head now this is why I am flaring so bad on this occassion..hope you are feeling better soon and get meds to control it sooner rather than later

  • I'm in week six of enbrel, tapering pred. I wouldn't say it's been an instant improvement, but there is gradual improvement I think. It's easy to administer, I had a site reaction but that didn't last. So good luck and be patient!

  • Cathie fantastic news for you..I hope it continues for you..heard a lit about site reaction...another hurdle to overcome I the patient, patient seems right

  • Site reaction shouldn't be too bad. I was advised to take antihistamine and put steroid cream on the area. I'd suggest adding moisturiser like dermol which isn't perfumed. I hope all goes well, will you let us know how it goes?

  • Hi Cathie thanks for the heads up..yes I will let you know how I go on it. ...I have everything crossed it goes my way

  • Thanks for all the words of support and well wishes.. I hope we all get there in the end and defeat this monster in all of us x

  • Hello Iain, sorry to hear this. I know it's physically and emotionally draining having a bad flare. I remember before I started Enbrel that I needed help with everything from getting out of the bath to getting up out of a chair and getting dressed (I had come off Humira several months before and the RD was uncontrolled at that time). I hope your Enbrel arrives soon and kicks in quickly. I started Enbrel at the end of January and take anti-histamines with it to stop side-effects. Some people seem to have a quick response but for me it's been more gradual. When I saw my rheumatologist in the first week of May she did an ultrasound scan on my wrists which showed the inflammation had gone down considerably and the bone erosions (I have the erosive type of RD) seem to have stabilised which is good news. My pain levels have gone down but I still have a problem with fatigue (however I have another condition that also causes fatigue). Hang in there and good luck with it.

  • Hi Fran, I have had no control at all since January, I have been up and down with a few good days here and there and I think it has been building to this point..I can only pray it passes fast but thats probably too much to ask for...Just hope my Enbrel gets here fast..its good you are getting control of your pain, I hope you get some relief from the fatigue..if its not one its the other or both..keep well

  • Hi,

    I went in enbrel back in 2001 after years of horrendous pain and no success with any of the multitude of drugs I had tried . Enbrel was magnificent :-). Helped beyond belief... I felt so much better, still had flares but it was an amazing drug. I had to stop for a surgery in May 2013 and had a major allergic reaction to 'something' after surgery which involved need wing many tests etc... All which delayed my restart of enbrel by months..... Sadly when I did restart some 8 months later it didn't work for me anymore :-(. I was heartbroken tbh .. Waited another fee months to be funded for cimzia and sadly after a fee months that hasn't worked for me.. In fact, it's made me very unwell .. Obv this works for some people. The upshot is my consultant is going to give me another shot on enbrel because we both feel perhaps the time back on it, after such an extended time off, wasn't long enough. I hope you fel better soon and really wish you well on Enbrel... Go into it convincing yourself it is going to work, it's an amazing drug, obv has certain health risks involved but all drugs do I guess. Good luck... Feel better soon :-) x

  • Sorry to hear it stopped working for you, I have heard a few people saying the same thing, do they have a reason as to why it stops working?..I have asked the same about mtx as for 6 months last year I was in remission then zince Jan this year it has stopped working also..the hospital have no explanations other than it happens..seems it happens all too often..I must admit the side effects have been scaring me, but its got to the stage where I will do anything to have quality of life...I will be going into treatment with renewed positivity and determination that Enbrel will be the one for me...:)

    I hope you get on top of yours and it works for you again..good luck

  • I am going to take my 6th injection of enbrel today. I also am on 22.5mg MTX a week, prednesone, welcoverin, plaquinel. Spelling are probably all wrong. but you get the idea. I put my first full 40 hour week in at work last week. Which I have not done in about 2 months. I still have the aches and pains, and get tired easily. I push through it so I do not end up in bed for 3 weeks again. I have had mild irritation around injection sight, getting boils which I am prone to anyway. I did figure out that injecting in your leg hurts really bad. My belly is much less painful. I hope enbrel works for you. I can tell it is working for me so far.

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