Hello everyone, I have just joined NRAS after feeling very alone, desperately trying to understand what is happening to me. I was diagnosed in April 2011 and have been on a roller coaster of emotions ever since. I am very lucky to have lovely, supportive friends and family but still feel I am in this on my own. After being diagnosed I started Methatrexate. I developed a serious chest infection and was taken off it. After several months it was restarted with sulphazaline. This seemed to do the trick and although my legs were still very painful I began to get around a little better. Over the past few weeks everything has gone pear shaped and I am now in a massive flare. I am worse than I have ever been and feel like it all is just never ending. I am a positive person usually but am finding this very difficult. I have been back to hospital this week and they have confirmed that the meds are not doing the job and it looks like I have to go on antiTNF.
I have had a week of tests and tomorrow have to have the fluid drained from my knees, something I have never had done before and I am dreading it. I just want someone to tell me that there is light at the end of this very long tunnel because at the moment all I see is more pain, tiredness and uncertainty. I must tell you I am the biggest wuss where needles are concerned so that doesn't help! Thanks for listening and sorry for being so negative .xx

Hi from another Julie!
First thing is no one is allowed to apologise for coming on here and telling us how it is. We all completely understand and have been (or are) where you are now.

Second thing is now you've posted you are no longer on your own.

The way you are feeling both mentally and physically is perfectly normal at this early stage. Finding the righht meds for YOU is a long and frustrating process.It won't happen overnight but that doesn't mean to say you will always feel the way you do now.

I'm just wondering if you could ask your rheummy nurse for a depo injection to help with the pain and stiffness until you start to feel better?

If it's any consolation, I could hardly get out of bed in a morning until they found the right combination of meds for me and now I am so much better than I ever was. Don't despair, try to deal with things one at a time.
Ask about a depo (steroid) injection and then there are ways of trying to deal with the fatigue that RA brings.

Hi julie

A warm welcome to this forum where you definitely will not feel alone and you can rant and rave as much as you want knowing that we understand and there will always be someone who can offer help and advice.

As has already been said it can take a long time to sort out the right medication for you but you seem to have a team that is on the ball if they are investigating Anti Tnf's for you.

I have been diagnosed 6 years and at present I am on Methotrexate and Enbrel which is keeping this horrible disease under control at the moment. As you will see as you read some of the postings everyone is different and everyone's experience is different but we can offer help and support to one another.

I would definitely ask about a depo injection while you wait for the next stage in your treatment.
I do hope the draining of your knee goes well.

Look forward to hearing more from you.

Best Wishes

Sue

Hi Julie, and a warm welcome to the forum. Before I joined, I didn`t know a single person with RA, and felt quite isolated. Here you will find lots of information from people who are going through exactly the same as you.

I was diagnosed in January 2006, and the following 18 months were really tough - trying various drugs/combinations of drugs, and none of them working. Things were so bad I couldn`t pick up my year-old grandson, which I found very hard to cope with. I was given steroid injections, which he;ped temporarily, so worth asking if you can have one.

I went onto anti-TNF in summer of 2007, humira, and it has made a considerable difference to me in terms of mobility etc. When my second grandson came along I could pick him up, no problem.

There is light at the end of the tunnel, but it`s a slow and frustrating process while you wait for the "right" drug, ie one that works.

Take care,

Kathleen x

Hi Julie

Welcome to the forum, as you see you are not alone with RA now as we really do understand just how you feel at the moment and how despairing it all seems. This condition can be so unpredictable and seems to always want to do its own thing ! Its really good that you are keeping positive, I think it always helps especially when it all seems just too much. I have had it for three and a half years now being diagnosed when I was 53, like you the dmards didn t control the RA so eventually went onto the biologics. I went onto the biologic Cimzia last July then adding methotrexate by injections and with a few other bits and pieces have the RA more or less under control and am now able to lead a fairly normal life. It does knock you for six in the beginning but there really is light at the end of the tunnel, so stay strong as you will get there Really don t worry about the thought of injections, it really is nothing honestly I do two now and think nothing of it and I would thought I was a wuss too !

Thinking of you Julia xx

Hi Julie
Welcome from me too. I was diagnosed September 2010. Sorry you are going through a massive flare at the moment. Hope things settle down for you soon.
I have found this forum to be very informative and friendly.
Debs

Hello to you all and thank you so much for all your kind words and info, i was so surprised when I saw all the replies, lovely. Well I was very brave and had the knees drained and as Jenni b said it hurt like billi-o but have had some relief since, they injected steroids into the joints too which have obviously eased the pain. I ahve to have another assessment in 3 weeks to see if i still in anti tnf criteria, doc seems to think I will be so fingers crossed I may be on the right road now. I wish I had joined this forum ages ago I feel like its ok now to off load all the worries and scary bits about this horrid disease and actually learn more about it too so thanks again to you all and I hope all of you are feeling well at the moment, take care hugs Julie Boo xxxxxx

glad you have been sorted & patched up!!
I couldn't imagine what its like to have your knees drained......the hospital tried earlier in the year, but nothing came out!
The injections in knees are a relief, take the edge off for a while.

I'm off Thursday for another steriod injection to take the edge off, can't have knee injections until we have a date for orth durgeon on knee, hospital wants the surgeon to see it all flared!

Glad you love the forum member.....I wished I joined years ago, I feel that I can open up on here.

Jane
Xxx

Just want to say HELLO from me.

We all understand the ups and downs of this unpredictable illness, the worries and fears of it all.

You will get lots of advice and support from people who know what it's like. Sadly most people think it is just OA and taking some sort of pain relief will make it all better. We all know it's not as simple as that.

Ask any questions you like and I am sure that someone will have the answer.

Take care and I look forward to reading your posts.

Paula x

Hello Jane,
Hope the steroids help, unfortunately the steroid they injected when they drained my knees has worn off already and I back to square one Have my appointment for next joint assessment so really hoping they make a decision and get me sorted out, it just seems never ending. Really hope you get your knees sorted too. Take care Julie xx