Mylo

My heart goes out to you. Being diagnosed with such a horrible disease is very hard. Accepting it is even harder. You have every right to say you have RA. Just because you are sero-negative does not mean that you are suffering any less than the rest of us.

I truly believe that the only way you are going to accept this is to talk it over with someone. You can either do it on here or ask your GP to put you forward for some counselling. We have all been in that dark place BUT there is life after RA and you have just got to find the right path for you. It is good that you have now qualified for Enbrel. This could be your life saver and make you feel so much better. Yes they are horrible drugs that we have to take but you have to find the right one for you and unfortunately this is just through trial and error.

Please, please find some way of talking about this. You are not alone.

Take care

Jackie
xx

Hi Mylo,

I think all of us feel the same when we are put onto the anti-TNF drugs - somehow they seem so much more worrying than the DMARDs, which have been around a lot longer. I was scared stiff when I first started, but also desperate, as none of the other drug combinations had worked, and my quality of life was seriously compromised.

Feeling down is a major part of RA, but one which is underestimated by the rheumys I think. If you have a good GP it would be worth mentioning how low you are feeling - my GP keeps a very handy box of tissues on his desk : right within my reach!

I`ve been on humira now for almost 4 years, and while it hasn`t given me my life back, as some folks claim, it has certainly improved it considerably. I`m not by nature an optimist, but I have learned since diagnosis to try to make the most of the good things rather than dwell on the bad - not easy, but I try.

Have a chat with your GP - many of us have taken anti-depressents for a while to help us turn the tide.

Take care,

Kathleen C x

I hope Enbrel works for you.

One question about acceptance of RA I would ask is have you had repeat blood tests for Rheumatoid factor or the anti-CCP test? The former I read is often negative in early RA and turns positive for the majority over time. The latter is supposed to be most specific for RA. It (anti-ccp) was done in my case as the RF test was negative so I was/am sero-negative as well I am told. Once anti-ccp was positive and combined with my symptoms this confirmed RA without doubt in the consultants mind.

Frankly when we feel the way we do I don't understand anyone being in denial about RA disease and we have to try and get on with the drugs as we've no choice.

Good luck with the jabs and I hope you do well on them.

- Darshin

Don't worry Mylo, you are not alone in not wanting to accept the diagnosis.
I was diagnosed 10 years ago and still think, well I've had this for 10 years now, it's time I was better, I don't want it anymore !
Yes, we know we have a long term disease, but that doesn't mean we have to sit down and let it get the better of us!
Carry on with the fighting spirit!

Doreen xx

Hi Mylo

My heart goes out to you too. Do you have a good friend around you could talk to? I have a mum-like figure who I have spent a lot of time with over the last year (since diagnosis), who can cope with all my tears, anger, frustrations etc. She has been an absolute rock and helped me to attempt to come to terms with the changes it has made to my life. (I've had to stop working). Sometimes I just text, other times we meet for coffee. Other times we sit in the car looking out at the Isle of Wight with a cup of tea. If you don't have someone, this forum is great too .. you can ask questions, say how you are feeling and know that there are always many others on here who have felt the same.

One thing I will say to encourage you, is that My consultant said that when I started Humira (a different anti-TNF), she reckoned it would lift my mood (my GP wasn't so sure!)... but I have to say, within 1 week of taking it, my mood had completely changed. I still have some off days, but overall it must have helped the inflammation levels that cause much of the depression... it also lifted me in such a way as to feel 'on top of the RA' rather than it sinking me down all the time. I now get out and do what I can, and don't feel guilty about what I can't. Hubby now cooks tea nearly every day... although today I'm going to have a go!

Keep going Mylo... it is a grieving process of what we've lost... but there is light at the end of the tunnel.

lots of love
Anne xx

hi Mylo,

totally understand about feeling down and tearful amnd anxious about starting a new drug,

i am currenly waiting for the go ahead to start Humira afer failing on two DMARDS. and to say i'm anxious is an under statement.

over a year on and not under control i have just about come to terms that i have RA now.

also don't be ashamed if you feel an Anti Depressant might help get you through this period, i would go and talk to your GP.

do let us know how you are getting on,

Suzanne x

hi Mylo,

totally understand about feeling down and tearful amnd anxious about starting a new drug,

i am currenly waiting for the go ahead to start Humira afer failing on two DMARDS. and to say i'm anxious is an under statement.

over a year on and not under control i have just about come to terms that i have RA now.

also don't be ashamed if you feel an Anti Depressant might help get you through this period, i would go and talk to your GP.

do let us know how you are getting on,

Suzanne x

no idea why this posted twice

Hi everyone, thanks to you all for the replies, you're all helping so much with your comments and support. I'll meet Enbrel next Tuesday, 28th, and am feeling a rather strange mixture of almost looking forward to it, but not wanting it to happen. Thanks again for all the good wishes.
Mylo x