Great to read your news, Paula - it should give hope to those whose RA journey has just started, and show that there is indeed light at the end of the tunnel.

So pleased for you!!

Kathleen x

Woooo de ho ho hooooooo

Remission??

That's fantastic

Hello Everyone....long time no speaky.

Before I start my 6 months up date I just want to answer Paul's' question about injecting in the leg.

I also inject MTX so I was advised to use four injection areas i.e. both sides of tum and both legs, in order to let the area heal longer. Was told that due to me having RA I take longer to heal and if I inject into an area that's not healed properly the drug won't be absorbed so well. I was reluctant at first to do it in my legs, but I like it more now than doing it in my tum. The Enbrel does sting a little now when I do it, (not a lot, honest and it is over and done with in a minute or two), but I think it's not so bad if I do it in my leg. Might just be all in my mind. I have started using my legs for Enbrel and tum for MTX.

Well, how am I doing 6 months plus down the line?. Now before I start, I have still not had the need to reach for pain killers, but if I am honest I am not as good as I was last time I blogged. These last few days I have started getting slight knee pain, my shoulders have been painful, my feet have started to hurt, mainly at night, I feel like I've got half a tennis ball stuck on the bottom, have even checked once to make sure that nothing was stuck to the bottom of my foot. My fingers have started doing strange things, all of a sudden I have this funny feeling in my hands and then one of my fingers will move and I can't move it back. I wouldn't say it is painful, just feels so weird and strange and I just don't like the sensation that comes with it. I have to concentrate so much to move it back. You know when you see people with physios trying to walk and you think to yourself.....just move your foot......I really now understand just how difficult it must be to move a foot, when it is so difficult to move just one finger. I'm beginning to wonder if the initial shock to my immune system having Enbrel is wearing off and I am beginning to get immuned to it......I really must think positive here.......I am still loads better than I was and I have not yet like I have previously said had to reach for pain relief. I do know that some on anti tnf's still have pain medication, so I am still doing well and really shouldn't moan at all, when others are suffering so much....so moan over here Paula and just be grateful!!!!!

I have got to say that at my 6 months assessment I had no swollen or tender joints and my CRP was 8, so I would thing that I am still in remission.

Well, that's all for now, husbands cooking tea and I have just been called for pot washing duties, if I think of anymore to add I will do it later.

Paula x

Hiya Paula

Lovely to hear from you.
Really interesting re your enbrel and 6 months on.
I have only injected in my legs, alternate legs each week.
Haven't done tummy yet.

Your crp is 8
That is amazing
I've cut back on painkillers to first thing in the day and last thing at nite.

You inspired me and gave me confidence in going down the anti tnf route.....the unknown adventure with ra

Lovely to hear from you Paula
Jane
Xxx

I prefer my tummy too , it hurts more in my legs

Sophie x

Thank you all for your replies.....I never thought that it would start a discussion about where we stab ourselves. Just shows that we all are different. Had to smile at Ann with her measurements of where abouts on her tum she does it. I keep notes on my calendar where I do it so I don't forget. I also keep records (in the NRAS book that we were given), about all of my drugs, when I increased them, when I stopped taking them, when I took steroids and started to reduce them, when my next x rays are due etc etc. Yes, I know, little Miss Organised, but you do forget things about your drugs the longer you have this illness and have things added or changed.

Reading back what I put I really sound a whinger, moaning about a few bits of pain here and there, when so many of you are really bad. My biggest fear, is that I will end up like I was before I started Enbrel, really bad, hardly able to walk. I know that drugs can stop working and it does play on my mind somewhat. I just thought that I must explain this to you all.

I have googled trigger finger Suzanne and I don't think it is that. My fingers move, go stiff and I can't move them at all, they don't just pop back into place. It really is difficult to move them, the longer it takes them to get back to normal the stranger the sensation feels, it is on the list of questions for my next assessment.

I have also found out, well I think I get prickly heat when I go out in the sun. I didn't get this at first (thinking here of when I went to see Julie at Christmas and Easter and had some hot days), but this last month or two I have started getting on and off a itchy rash on my arms and chest, sometimes I even develop hives on my skin. At first I tried to think if it was after taking Enbrel or MTX but sadly I have come to the conclusion that it is prickly heat. I went to Norway a few weeks ago, really lucky with the weather, high teens, low twenties, I was using factor 50 sun lotion but I still happened. Even to the point that one day I was on a sun lounger and then in the evening the soles of my feet started itching like mad. Heaven knows what state I would be in if we went to see Julie in the summer (for those who don't know she lives in Gibraltar). Another thing on my list.

Well, I think that's all for now.

Love Paula x

Lovely to read your updates Paula
Glad you've enjoyed the freedom of your motor home - we sold ours 2 years ago because we needed another car.....still pine for an adventure.

At least you can pop your enbrel in the fridge and go!

Only one tender joint - wow, amazing!

Anti tnf's are good news (one enbrel taker to another!)

Take care lovely
Jane
Xxx

Hello Jane

How are you doing on Enbrel at the moment? Really hope it is working well for you.

Yes, husband is the fridge monitor when we go away. We find that the fridge acts differently when on gas, electric or battery, so he, bless him was forever checking the temperature and adjusting the dial on the fridge. The biggest problem that I had was keeping MTX at the right temperature during the heatwave in July, it wasn't until I got back that I saw the advice on here about putting it in the fridge. We ended up putting it at the back of a cupboard that you can gain access from the outside, that cupboard always seems to be the coolest. I did mention it to my specialist nurse and she said that it probably is still Ok up to 30 degrees, anyway I didn't turn green or anything so it must of been OK.

We've only got to the end of October to do some more travelling, tax runs out then and were planning on seeing Julie again for a month a Christmas and with all the bad weather we've had these last two years, we won't tax it until spring next year. It will be cleaned and then the cover will be over it ready for the unveiling next year.

Love Paula xx

Hello Suzanne

You must of posted your reply while I was doing my reply to Jane.

Must agree that I hardly ever think about my RA, sometimes feel a bit of a fraud really and the question pops up in my head....Have I really got it, or is a mistake......then I think back to how I was this time last year and reality comes back. Positive posts from people like us must give hope to others starting their journeys, that's why I think it's important to just update every now and again. I am aware that people who don't post on the forum may read what I put and it may hopefully give them some help.

With me being away a lot during the summer, I didn't like popping on and off the forum, I have logged on from time to time to see what's happening, but not posted. I'm really going to try to post more now.

See you've got your husband at home now the same as mine, I keep telling my girls we are going to go Skiing.....Spending The Kids Inheritance.

I remember when Downton Abbey first came on and the quote that the Dowager Countess of Grantham said.....What's a weekend.....I know now what she meant.

Paula x

Hello....I'm here again with another update.

I do pop on and read the forum now and again to see how you are all doing.

Now been on Enbrel since November 2012 and pleased to say that I am still in clinical remission. I had my last assessment a few weeks ago and I had only one tender joint and two or three swollen ones. I do have the odd aches and pains here and there, but nothing to cause me any concern. My fingers sometimes get a little stiff and painful but I can live with that.

I've injected Enbrel this morning and I always check, like I was told by the nurse to look and make sure that there is no bits floating in the drug, check the expiry date and to make sure that it is clear. I look at this small amount of clear liquid in total amazement that this makes such a difference to me....it truly is remarkable. The only side effect that I have, even if I can call it a side effect is that I have a very small swelling at the injection site immediately, this disappears within a hour. I hardly ever feel the needle going in and sometimes it stings slightly but boy what a difference it makes to me. This wonderful drugs has given me back to me.

I have had a little blip, all my own fault and I had to give in and take pain killers, the first time since being on Enbrel. We went to Spain for a month over Christmas (for those who don't know daughter lives in Gibraltar). We hired an apartment and when we got there I put my MTX in a cupboard in the kitchen out of reach of my grandchildren. It had a built in oven with a open cupboard over the top which housed the microwave oven and then there was a cupboard over that, that was the cupboard I put the MTX in. Never dawned on me that the heat from the oven would get into the cupboard beings that there was a gap in between.

I inject MTX on a Tuesday and with Christmas Eve being Tuesday and me wanting to have a drink and not worry about things I had decided not to inject that week, have done this before and been perfectly alright. Anyway I was convinced that MTX wasn't doing me any good anyway remembering how bad I was before taking Enbrel. Anyway one evening I went into the cupboard and the heat from the oven had made the MTX warm. Well. that was that then, I couldn't/didn't want to inject it, didn't know if it was advisable to, that meant that I was not injecting for four consecutive weeks.

I felt fine at first but towards the end of the third week I started to notice things getting painful again. Getting stiff at night, fingers bad in the morning, knees hurting etc etc. I was and still am gutted that I have realised that I need to take MTX, I so much wanted to stop it or reduce it.

Even after starting injecting again it got worse before it got better and I had to on a few occasions resort to taking pain killers, I so much didn't want to but when you have to you have to. It took several injections before I could say I was back to normal.

I did tell the nurse all of this, always think that honesty is the best policy when being assessed and she said that patients that have their injections done at the hospital and go away for their holidays are normally alright for about two weeks, but three weeks is a bit too long.

Well at least I know that I need to take MTX and it is doing me some good.....I sometimes use the phrase.....It's a need to know basis.....Well I needed to know if I need MTX and I now know that I do.

Paula x