Well...... the phone did ring eventually!

Hi all,

Hope everyone is as pain free as possible.

Yes, the Rheumy nurse finally rang me on Wed re my acceptance for anti TNF.

I HAVE been accepted.....Yes, result!

I could hardly believe it, i had to ask her to repeat what she said!

This might be reassuring for those of you that suffer mainly with the feet.

When i have had DAS scores done in the past, i have failed as it was done on my hands only. So because of the active inflammation present (shown on ultrasound) in the feet, the consultant put my case forward with DAS scoring done on my feet. I have to have all future DAS scores done just on my feet.

They are organizing ENBREL for me to inject, i obviously don't know anything about these drugs, but i am sure those of you lovely people out there that have used this drug will help me.

I must admit I am worried about using these heavy duty drugs, but my quality of life is so poor, the drugs seem a preferable option.

I don't know if its best to be forewarned about any side effects, i think i will face them if they should arise.at the time.

I need to go into this with my positive head on.

Vonnie xx

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  • Hi Vonnie, Hope you are well, what you call DSA is it the same as we have in the UK DLA a living allowance.Mattcas

  • Hi Mattcass...Vonnke is talking at the scoring system for RA ...DAS...Disease Activity Score which is one of the tools used to determine the extent of the disease in our bodies. To be accepted for anti-TNF this has to be at a certain level

    Katie

  • Hi Katie thank you, I'm learning something every day.Matt

  • Hi matcass, thank you for your reply and Katie has explained the scoring really well. I do live in the UK, would be nice though to live abroad! Hope you are doing ok.

  • Hi Vonnie,

    That is fantastic news...I started on anti-TNF just three months ago. I like you was so very worried and concerned about the side effects and precautions I would now need to take.

    All I can say is, I have not looked back since I started.. For me I had a result within days and although it is still early days I can honestly say that I have my life back. I have had one or two spells where I was worried it was not working however, as I write this, I actually do not have any pain.

    As for the precautions, I thought it would be harder than it actually is and I work in and out of hospitals where infection is more concentrated and I am neither up nor down.

    So great news and good luck .....keep us posted as to how you are.....we all love to hear when treatment works

    Katie xx

  • Vonnie/Katie Need to sharpen up in the abbreviation stuff, DAS/antiTNF the next thing the CID will be at my door, hee-Hee Matt

  • I know Matt, these abbreviations are everywhere. TTFN!

  • Hi Katie thank you so much for sharing that, its really filled me with hope.

    Amazing that you had such good results so soon and long may it continue!

    Can't believe what it must feel like to get your life back and pain free.

    Hopefully, i will get some improvement, anything will be a huge bonus.

    Vonnie xx

  • Vonnie, I did not stop smiling for a month! Xx

  • Brilliant news - well done Vonnie I hope Enbrel works brilliantly for you as it seems to for many people! Tilda x

  • Thank you Tilda, i hope i can get some relief.

    I hope you have got things under control with your meds and are feeling ok now.

    Take care. Vonnie xx

  • Thank you so much scouser, its lovely to feel so much support from everyone. You take care. xx

  • Great news .. vonnie.. how long did you have to struggle with no meds to get this x

  • Thanks summer, Its been a long haul. I've had no dmards for two years. I was on gold for two years which worked quite well at first, then i had to come off it prior to surgery on my foot, that was two years ago also. They re-introduced gold again, but got allergic reaction to it effecting my lungs.

    Before the gold i was on maximum methotrexate by injection. Before that on leflunomide. Only the gold brought down my ESR. So think this was on the cards, but my feet are the worst effected and i kept failing the DAS score on my hands. I am so relieved they have took my feet into consideration using DAS score on them.

  • That's great news Vonnie. I know exactly how you are feeling. I had to wait nine months.....the worst nine months of my life.....once you get over the 'injecting' yourself thingie you will be grand. My first drug was Humira and I had this huge smile on mmy face throughout the first time I injected myself I was sooooooo glad to be getting it!

    These are very strong drugs but when they work they can make remarkable changes to your quality of life. I wish you all the very best Vonnie. Keep us up to date with what is happening to you. All the best darlin. Jean xx

  • Thank you Jean for your kind words. The frustration and helplessness of the whole thing, made coping with RA so difficult.

    To be honest, i don't know how I've managed all this time with just painkillers and no anti-inflammatories.

    If the injection is like the methotrexate one, i should be ok i think.

    Will keep you all posted.

    Vonnie xx

  • That's great news, Vonnie. x x

  • Thank you so much alsmum. xx

  • yeah great news!!! wooop!

    I had Enbrel, i know of a few people who used it and were fabulous so hope that is you!! I had no side effects on it at all but just for me didnt work, so three month later automatically without any more DAS, DAZ, OXO !! scores i got Humira, so hope we both feel good very soon xx A

  • Hi allanah,

    Good to know people have been on Enbrel and can give me their own 1st hand experience. Reassuring, you had no side effects, but good to learn they put you, relatively quickly, on Humira.

    Yes, would be great for us both to get some benefit.

    These flip-pin abbreviations , they get everywhere don't they? xxx

  • What fabulous news please keep us updated on your progress.xx

  • Thank you miss, i will keep you all informed as i go xx

  • Hi,I'm on enbrel,been on it for about 9 months now.i don't get side effects on it but the click pen is excruciatingly painful to use-was advised to use an ice pack on area befire and after injecting but this didnt help much.the pain is worse on the thighs and arms and not so bad on the stomach.i have since changed to the SB injection one,its a bit stingy when you inject.i find that taking it out of the fridge 1.5hrs to 2 hours before injecting helps.

    Good luck,hope it works out for you

    B xx

  • Thank you for the info, that's so helpful. Funny enough the rheumy nurse asked did i want the pen or injection, i told her i hadn't used a pen and was undecided. She said the pen for Enbrel, can be a bit fierce. so i opted for the injection. I'm pleased i did now.

    Thanks for that about taking it out of fridge before using.

    I hope Enbrel works for you. xx

  • ye forgot to mention that, its the same if not worse with Humira though, but once its dont, its done lol

  • Like you I take mine out of the fridge for a good hour to hour an half before injecting. I have always used the pen as I did not really want to have to inject with a needle so was glad that it came this way. I find that it stings occasionally but not all the time. I try to get myself very relaxed beforehand by watching some talk programmes so that it takes my mind off what I am doing, then pounce! Usually it works a treat.

    My main problem is bleeding afterwards but the team don't appear to be worried about it.

  • Hi again Georje,

    Sounds like you have a good system going for you, getting yourself relaxed is sensible. When i was injecting the methotrexate, it took me a while to get used to it as it was such an alien thing to do.

    Well my tummy seems a good bet for it to go, i guess you have to move the injection site around. Looks like i will be full of bruises, i bruise so easily these days.

    Thanks once again xx

  • Hi Vonnie55,

    Enbrel seems to be doing something,not sure how much as my DAS/VAS score are the same as they were 8 months ago but I haven't gotten worse so it must be doing something.tried Cimzia first which didnt work for me sadly.

    Let me know how it goes,hope it works for you.

    Good luck.

    B xx

  • Hi B, as you said the scores show things haven't got worse, its probably slowed it right down, i'm not sure how these drugs work. I will have to do a little reading up on it.

    Hope you see an improvement in things, that would be even better.

    Good luck also.xx

  • Hi Vonnie

    Fingers crossed u have a response like I've had. I can't believe the difference to my life since going onto anti tnf. My husband has said he's got his 'old' wife back , I'm only 42, but been married 20 years. Just been to a music festival , have walked for 4 days, and apart from feeling tired, some pain I've not got inflammation ( unheard of in 4 years).

    Hope u have a success story. :-)

  • Also , they cost £500 each injection, my husband calls me his million dollar woman!

  • Hi case, nice to hear from you and thanks for sharing your story, which sounds brilliant, Its like its a miracle. Would be wonderful if i had some improvement with it.

    I can't imagine what it must be like to get your old life back, amazing!

    .....Gosh, i knew they were expensive, but not as much as that...wow!

    Vonnie x

  • Hi i am now trying my third anti TNF sadly as the others have failed, enbrel was first and it worked from day one it was my mirricale cure but sadly three months into it i got pins and needles in my hands and feet only at night so i was told to stop using it. A part of me wishes i never mentioned the pins and needles as its been a downward spiral ever since!! And i would go back on it within a blink of an eye!! but am not allowed to !! Then it was Humira but within 2 hours of injecting i had a really bad violent allergic reaction to it so never went there again now this fri i was injected with spimponi which is done once a month not sure how its going to go to soon to say but better than Humira as i was able to tolerate.

    Goodluck with the enbrel . xxx

  • Oh Sarah, I'm sorry you are having a difficult time finding the right Anti-tnf for you. It is a shame you got pins and needles and had to come off it.

    I hope the simponi works well for you and without any horrible side effects.

    Take care xx

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