Enbral Newbie

Hi everyone. Am starting my treatment with Enbral tomorrow lunch time Have the nurse calling to do it. Fingers crossed all goes well. Been a hard decision to take and caused me a few sleepless nights, but having 5 new joints go into flare in a 2 week period made my mind up. By the way I failed my DAS 28 on both tests 4.73 and 4.85 thus not meeting the 5.1 NICE criteria . My nurse could not understand how my crp/esr could be so low as in her words "I can see in front of me the swelling and inflammation in your joints", plus was only shuffling that day as had flare in heel (plantar region) and 2 toe joints in each foot. My nurse did say I was one of those whose inflammation does not show in blood results, and that was what let me down on the DAS 28. Doing some research online on low esr in RA patients with swellings and joint tenderness it does seem to be quite common. Anyway they seem to have been able to over rule the criteria and on following appt was asked which biologic I would like! I have emailed this information to James of NRAS as there was a poll about falling inbetween the 3.5 and 5.1 and not being able to access biologics. It does upset me to see how different treatment for RA patients across NHS local authorities differs. We need a campaign to say 'We are not numbers, but symptons, please treat us accordingly'.

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  • Hi Net, I sure do agree with your last line..have maintained all my life, that people need to be treated, not the lab results.

    I am a retired Medical Lab Tech. There are several variables in temperature, humidity, age of specimen at time of testing, that can alter the results. These are considered acceptable variations of norm, although they can affect the results. One answer to the question is to have the lab repeated, and asked to be done "stat" or immediately upon receipt.

    Often, efficiency dictates that a number of specimens submitted to a lab for the same test, be all batched and run together. Probabilities are that the most recently drawn specimens will more likely be the most accurate. Results may not vary significantly, then again, they might. If the results don't match the patient's symptoms, repeats could be warrented.

  • I have been on Enbrel for five years now and it has transformed my life. I am back on my feet, walk at least two miles every day [weather permitting] and feel well. I think we are fortunate to have such a wonderful medication which is very expensive but free to us on the NHS. Hope all goes well for you xx

  • Hi. Thank you for your replies. All went well. Managed injection ok. Didn't hurt and no site reaction at the moment and my nurse was very nice. Hoping this will work for me and take the soreness away from my hands and stop any further new joints being in flare. Very glad to hear that it works well for you Magglen x

  • I'm the same as you, I start methotrexate on Tuesday next week. Xx

  • Hi Net

    By now, I see that you had your 1st injection & you seem to think it went fine . Will you be able to give your next injection to yourself ?

    I will be facing giving myself an injection & I'm curious what it will be like.

    I'm glad you did ok with it & I hope it helps you feel better. Take Care !! Ilene

  • Sorry for late reply Hoping4GoodHealth., llene. I actually gave myself the injection under the nurses supervision. There was a pamphlet that I read before on how to do it. When the nurse was there we went through safety checks on the injection. ie making sure the liquid looked clear not bits and that the date on the injection was within use. That is was stored correctly in the fridge. The n urse had a practice click pen that she showed me what to do and explained about how the mechanism worked. I then just did the injection and it was fine, about 4 seconds of slight and I mean slight discomfort. I have had no injection site irritation. I did have headache that night and following day, but paracetamol took care of it. Good news next morning I woke with no stiffness and soreness in my hands which I have been suffering with for the last month! Hope all Goes well Pinz and llene. Jeanette

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