Hi Paula,
So pleased to hear that the Enbrel is working well for you. Please do pace yourself
with the knitting, not too many stitches on 1 needle. Mind you Father Christmas
won't need a very long one ( if you know what I mean !!!!!sorry). You'll find
joints that haven't worked for ages. Have a wonderful Christmas with your
Family and bring back some sun and warmth if they have any to spare
Take Care Anne

Hi Paula - sorry I've missed some of your thread and have only just read it back all the way through, and what a wonderful read it makes!!!!! I'm smiling and grinning from ear to ear, imagining you dancing around the kitchen!! You've been an inspiration with your honesty, and I am so pleased that you're getting such a brilliant benefit so quickly - long may it last - years and years at the least!!!!! I know exactly what you mean about getting mentally better - pain is terrible at sapping brain power, and it's only when you feel better that you can think clearly again. And with RA the one thing you do need to do is think straight, to keep doing all the things that have to to be done to keep well!!


Have a wonderful holiday and think of us poor mortals freezing in wet and chilly England. Sylvia xx

Hello...next installment.

Been away since the middle of December and still am doing well, apart from a slight niggle that I will mention later.

Been really busy while I was away (all in my thread on Chin Wag) and I am pleased to say that this was all thanks to Enbrel. All was well at week four so I have been decreasing my steroids since then. I had only been on them since the end of October so it as been a quick reduction, I am now taking 5mg every other day, got one more week of this and then I can stop all together and then I will only have to take folic acid if all goes to plan. (fingers crossed).

Whilst I have been away the old me came back, the one that was always on the go. Husband kept telling me I was doing too much, but I didn't listen, I just relished in the fact that I felt normal and wanted to do all the things that this illness had stopped me doing. My eldest daughter joined us for a few days over Christmas and she remarked that I was none stop all day, I told her I felt that I had won the lottery. I even managed to wear heels when we went out for a meal!!!!!!

Apart from the obvious things I noticed little things that I could do.......Putting on granddaughters socks.......being able to put her hair into a pony tail (twisting the elastic hair band)........... opening a can of coke.............opening a bottle with the squeeze and turn top...........lots of other little silly things that people take for granted.

My little niggle is that I have some discomfort in what I think is my hip. I have ache/pain on and off deep inside my bottom cheek (that's the only way I can explain where it is). It started about a week before we came home, I have had my first assessment and I told the nurse and she put it down to me being more active than normal, I'm not sure about this. I was speaking to someone I know who's got RA and had both hips replaced. She told me that she fell on her left hip and then got pain in her right hip in the same area that I have. It turned out that she had pulled her back in the fall and this was what the pain was. Well I did turn over badly on my left foot whilst I was away, very painful, thought I had sprained my ankle, had a lovely bruise, thinking about it, this was around the time it started so it may be back. If it is no better when I go for my second assessment I will mention it again. I've never had problems with my hips before but I did start to have pain in my right groin when things were bad last October, just hoping it's nothing RA related. The good news from the assessment is that my CRP on my last blood test which was done three weeks after taking Enbrel was 5 yes FIVE. It was 87 on my first assessment in August. I know that the steroids would of bought it down somewhat but Enbrel must of played a big part in it as well. When she did the DAS score I only had two slightly swollen joints on my right hand.

I told the nurse that if anyone is reluctant or frightened to start Enbrel she could give them my phone number and I would be happy to talk to them. She said that only that morning she had been talking to a patient on the phone who was worried about taking it but because of patient confidentiality she couldn't pass phone numbers on. Silly isn't it? If both parties give permission I can't see that anything is wrong with it.

I did have a cold whilst I was away, the first one that I have had for years, I wasn't ill, just a nuisance really having to keep blowing my nose. I also had a cold sore and another one appeared yesterday. I have been into the chemist today to get some cream. I always have a chat with the girl on the pharmacy department, her mum believe it or not has got RA, under the same consultant as me and is also on Enbrel, she told me her mum since being on Enbrel gets lots of cold sores, so I will mention this to the nurse at my next assessment, it may be a side effect not yet recorded.

I think that is all for now, if I remember anything else I will add it later.

Paula x

hi Paula,

so pleased to hear you had a good holiday and that Enbrel is certainly working for you, so pleased to hear this. it makes it seem a dim and distance past doesn't it with all the worry when you are starting on the drug, as you know the state i was in with Humira.

try not to worry about the hip pain ( easier said than done i know ) you may find it goes after a few days. i must admit i overdid things in the New Year with cleaning, i.e. i got a new steam cleaner, i already have one that does the floors and it makes it so much easier than wringing out mops and so much cleaner. the new steam cleaner does all, i.e. tiles, paintwork, taps, etc. well i forgot i had RA and started to do my bathroom tiles, floor to ceiling then i went onto the paintwork upstairs i.e. doors, bannisters, skirting boards and the like. my husband was doing some work in our garage and had no idea what i was up to .. lol, well when i stopped i knew i'd overdone things. the next morning i couldn't open my left hand up for a couple of minutes very well and i had pain in both shoulders, this is where my RA pain started. so panic set in and i thought i had un-done all the good Humira was doing for me. the shoulder pain lasted a few days to be honest, then i had my Rheumy Consultant appoinment a week or so ago, and she said i am doing well overall still and suggested i may have inflammed tendons with all the work i had done. fortunately the pain has now subsided. so i must remember one of the first things i was told when i joined the forum and that is to pace myself!

i hope to hear that things have settled down for you hip wise as well as the cold sores and you continue to enjoy your new found freedom Enbrel is bringing.

take care,

Suzanne x

Hi Paula,

It`s great to hear how well you are doing on the enbrel - long may it last. When my CRP was way up sky high in treble figures I never thought it would ever come down as low as it has - my last CRP reading was 7.I really hope the enbrel keeps working for you the way humira has for me.

Interestingly enough, my specialist nurse at the time I started humira told me that if it worked I would probably get three years out of it. My current rheumy disagreed, and said no-one can know how long it will remain effective for - it will be six years this summer, so I hope I get a few more yet.....................

Take care,

Kathleen x

How lovely is that?

Paula, that enbrel is a marvellous drug.
I've done the best of any of them on that one.

Fab

hi Paula,

lovely to hear how well you're doing on Enbrel still.

better still that you don't have to take painkillers and are off the steroids, i have never had steroids and haven't needed painkillers either, which i am thankful for!

the list of drugs i do take is way too long as it is. i take BP tablets, and Cholesterol one's as well, i lost quite a few stones in weight in 2007 which has definately helped my cause but my GP says if it ain't broke don't fix it with these drugs .. as i was tempted to try and come off of them with the weight loss.

the most pain i get is from the Osteo in my knee's but they are worn out and no pain killer would help the really. only get pain if i walk any distance which really i can't do these days, so Hubby pushes me in a wheelchair then.

sorry can't help about the rash, one to ask when you go for your appointment.

lovely to read your postive updates,

Suzanne x

Thank you Paula.....feeling strangly calm for op.

Lovely to read your blogs.
Is it worth trying t-tree oil (holland & barrett) little dash with luke warm water and cotton wool?
I do similar with tcp....but hubby doesn't like the smell!

Amazing that enbrel has given you your zoom.....at least there are lots of medications for us to try.
Take care
Jane
Xxx

Well, here I am again with another installment.

Had my second assessment just over a week ago (will come to that later) and had the follow up appointment to see my consultant 6 days later. I sat down in his office and said to him....I know what you are going to tell me, I am in remission, to which he replied....YES!!!. My DAS score on my first assessment was 2.5 (still on steroids then) and my last steroid free assessment was 2.1...Enbrel is a miracle indeed!!!!!

I did ask him about the difference between Humria and Enbrel, (I mentioned before what the second anti tnf nurse told me) and he started drawing circles and things on a piece of paper and started to confuse me abit with medical terms but I think that Humria blocks the TNF from doing anything and Enbrel absorbs it (hope I've got that right, feel free to tell me if I haven't). He did go on to say that the best thing about Enbrel was that the patient is less likely to get side effects, something to do with our bodies making anti bodies. I am not to see him yearly if everything stays the same. I am one very happy bunny indeed!!!!!

Second assessment with nurse......

We had our normal chat, told her about the rash on my face, see could see it but said that if it was the drug it would be all over my body and not just my face. I told her that I have had the odd bit of stiffness and odd ache here and there and I have come to realise that it is now that I am five years older than I was when I first got diagnosed with RA and this is the first time since then that I have not been taking any pain relief so I suppose it's all age related, she's not worried about it and I'm not. I have been thinking that because I got an immediate response to Enbrel was I really all that bad in the first place (still trying to justify taking these drugs). She reassured me that I was well within the criteria with my DAS scores.

So here I am five years down the line from my first symptoms, so this is how my journey to here was

Diagnosed May 2008 Put on 4 SLZ a day and after about six weeks they started to kick in. This worked well until the following year and I was then put on 6 a day. Worked well for a while and then I had to have MTX 20mg orally added this was May 2010.

Things got bad summer of 2011 and was put on injecting MTX so they could be 100% sure that I was getting the full dose in me. This worked well, RA fine but liver could not tolerate it so I ended up on 17.5mg. Also was taken off SLZ because it was disrupting my sleep. Not really surprising here that things got really bad just being on MTX. This was June 2012

Had to phone helpline the following August because things got so bad and my journey to anti tnf's started.

Been doing alot of thinking about things, I have always known that I am lucky that I have had no side effects from the drugs and realise that I am so lucky/fortunate that after nearly five years of having RA I only have two fingers that are showing slight deformity, I have read lots of posts on here about how people are struggling and having to have joints replaced etc and so I realise that I have come out of it pretty well. My biggest help in all of this is my RA team, especially my specialist nurses. There title is so right they are very *special* and to me worth their weight in gold. I don't know what I would of done without them. If I leave a message on the phone they get back to me normally the same day. They have got me in within a few days to see them when I needed to. When things have got bad for me my medication was changed/adjusted to try to prevent it getting worse. I have had good spells and I have had bad spells when they have helped me tremendously, steroid injections, oral steroids, emergency appointments made etc etc.

Yes I am very lucky indeed.

Paula xx

Hi Paula - yours has been a remarkable journey and thank you for putting it all into context. When I joined the forum last May, that was a very tough time for you, and you've really persevered and won through to this point of being in REMISSION!!! Yippee - long may it last

Best wishes and hugs - Sylvia xx