hi Paula,

just wanted to add that i feel for you right now,

wondering if a depo would tide you over this difficult time, i have had about 5 or 6 depo's ( not had one for 18 months now ) and 3 worked well and 2 didn't, no idea why they vary.

but when they work well they can make such a difference. i've never taken oral steroids so have no experience there.

i think you are between a rock and a hard place waiting now, and hopefully once you start on the Anti TFN it will kick in quickly for you, think positively about them now you've accepted that you are going for it. my GP who is like a friend and very knowledgeable on RA and the meds thankfully, has always praised the work Anti TFN can do and it was his final re-assurance that i knew that had to be the way for me to go.

i can also understand your frustration on waitingfor the X Ray as agree it will be sitting on an inbox desk.

thinking of you and hope to hear some more positive news from you soon,

Suzanne x

Jane......you made me smile calling them the anti wot nots, think I may refer to them like that now. Yes you are right it is a journey into the unknown. Just good to read the reassuring post on here that others have been on this same journey that I, Julie and looks like you will be going.

Suzanne..... I am going to phone the helpline tomorrow to see what I can find out about the x ray and why it's holding things up at the moment. Nurse did say last Thursday that they would chase it up, on he card requesting it stated that it needed to be done prior to starting anti tnf treatment, surely that should of made them look at it before now. It's getting me annoyed now because I feel as if I am in limbo at the moment. Once I've got the go ahead I've then got to wait for the drug to be delivered and then the nurse to come and see me. Christmas is coming and we want to start booking flights to see Julie over Christmas, book an apartment car hire etc, but I 'm still worried about initial side effects when I start using the drug and the longer it takes to get things moving the nearer it is to Christmas. I'm also going to have to tell them that the dose of steroids is not really helping much and see what they say.

Julie...I'm pleased that you've reached the criteria to start I know you was worried about it not scoring enough,but it is still not nice to think that you have reached this point so quickly. Have you had all of your test done? I had to have blood test done for lupus, hepatitis, one to see if I had immunity to chicken pox (can't remember ever having it) and a T spot test. They've all come OK just the stupid x ray results that putting a holt to it all. Good luck for next week!!!! Fingers crossed that it will do the magic.

Paula x

I spoke to one of the specialist nurses (Thursday), and told her how I was and she said that they are reluctant to increase steroids due to side effects and there is the possibility that it may cause a problem that I may have for the rest of my life. I told her that I thought that you only had problems if you were taking a high dose of steroids for a long time but she said that is not the case. Told me that everyone's got a limit to how much they can tolerate before things start to go wrong and you don't know what that is until you hit it, so they try to keep the use of steroids to a minimum. She asked if I was taking anything else for pain and I told her that I had stopped taking my anti inflammatories because I know that you are not suppose to take them with steroids. Told her that I had taken some paracetamols but didn't think they made much difference. She told me that she couldn't increase the dose herself and my consultant is on holiday at the moment so would speak to his registrar and get call me back.

They are still chasing up the x ray results and my consultant is adamant that he will not let me start on anti tnfs until they have the report back. The x ray department apparently is behind with reports at the moment and everything is done is order of propriety of how urgent the report is needed. So that makes me think that when I get near the top of the pile I then be put back when a more urgent report is needed. I can appreciate this and I wouldn't want to think that anyone with a more serious condition than mine is left waiting but it will four weeks this coming Monday that I had it done!

I thought long and hard about what she said about increasing steroids and decided that I'd start to take 8 paracetamols a day and wait a few days for them to build up to see if there was any improvement. I would hate to think that I opted for the quick fix of popping more steroids into me and regret it later. I don't work, I've got a good husband to look after me, I've had some relief with the dose of steroids so I will have to cope with things to see what happens.

Well, the following morning I had a phone call from the registrar. I told him my decision and he agreed with what I said, telling me that paracetamols were a lot safer option that taking extra steroids. He had looked at my notes could see I had a course of steroids in March - July, I had a steroid injection in August and he wouldn't be happy to increase the dose. He did say to wait a week to see what happens, saying that it takes that long to get a build up in your system. I have wondered since if that's when my consultant will be back and then the decision will be taken out of his hands.

So that's my latest ramblings, I will let you know how I get on.

Paula x

Hi Paula

I am so pleased for you that you will soon be starting Enbrel. enbrel has been the best drug for me!!

I wish you all the very best with it, fingers crossed you see some benefit in the next few weeks, I hope it doesn't take too long to kick in. lets hope by Christmas you will be feeling much better and able to take that much earned holiday.

Thinking of you
All the best
Rebecca

Hi Everyone,
I havent been using the Forum for sometime now, just the occasional read up of what is happening to you all.

I too am just about to have my second assessment for anti TNF and had thought I wouldnt be eligible. (I rather I think my brain was hoping I wasnt!!). I have already had the chest X-Ray. My latest CRP is 133 and I feel rough - so that does put a different light on the matter.
Your postings have given me reassurance - Yes I am scared, especially as its me who get the choice although Humira does seem to be recommended first by my clinic. I already inject MTX 22.5 per week and hate doing it. I had thought the MTX would stop but I have been told that I will still have to carry on with it plus the Humira.
I hope all goes well for those of you about to start and will promise to keep reading your posts - they are so helpful and stop you feeling alone.
Warm and gentle hugs
Sue

hi Susan,

just to say i started on Humira last August 2011 and to say i was scared was an understatement!!

but i put my trust on my Consultant, Rheumy Nurse, GP and NRAS Helpline and reading the forum also helped.

it has worked for me and i don't think twice about it now,

so good luck for when you start.

you might look back in the Drug section i think for my Thread called Suzanne started on Humira, although i haven't posted on there for a long time now.

Suzanne x

hi Susan,

just wanted to assure you don't be put off by how long it took me to get the funding for my Humira .. my PCT were really dragging their heels. i think Paula had funding in place as soon as she was given the green light to go ahead,

so it does depend on your area.

and i did chuckle at your antics, think we've all been there and got the T Shirt .. lol, my Postman knows i'm slow to the door ( my knee's aren't good with Osteo ) i call out i'm on way home if a window is open if i'm upstairs!!

why not start a Thread once you get going, we can support you and it's a good way of looking back at your progress.

Suzanne x

Hi Susan,

I take humira, and have been on it for over five years now. It`s made a considerable difference to my life, in terms of mobility etc., so I hope it works for you.

Kathleen x

Hello Susan

I'm pleased that my post has helped you, I think most of us when starting any new medication get worried, it's a step into the unknown.

Suzanne is right that the funding is in place straight way at my hospital, but it's still taken some time, I had my first assessment in August, my second one was 6 weeks later (I have put somewhere that it was 8 weeks, but it was 6). I was going away so it was booked for when I got back. I wouldn't worry too much about your second assessment. When I had my first the nurse said to me that she was sure I would score enough. I had had my routine blood test done the week before and my CRP was 80 something, she said that by that result and how my hands looked that day she was certain that I would score enough, My CRP that day was 85 and I had quite a few sore and swollen joints, by DAS score was 7.2. I was given a steroid injection that day and when I went for my second DAS assessment I was feeling alot better, in fact my CRP that day was only 23 (steroid injection still doing it's magic), but I still scored enough. CRP since then has got alot higher. With your CRP being so high on your last assessment I am sure that you will score enough on Friday.

NRAS sent me a book about biologics and there is a piece about NICE guidelines. From what I read it seems that 97.2% of people who score enough on their first assessment do on their second. Adding that the overwhelming majority of patients therefore have any unnecessary wait with very active disease. I was lucky in having a steroid injection, but I do know that they are normally reluctant to do this or prescribed oral steroids because this can dampen down the disease and then you may get a false result on your second assessment, I think it's cruel to leave a person for a month in alot of pain and discomfort. Perhaps is the people who put these guidelines in place found themselves in our position they may have second thoughts about it.

You mentioned about stopping MTX when starting Humria, from what I've read they have found that anti tnf's work better if given with MTX. I suppose we have to put our trust in them that know. I did ask my specialist nurse if my dose would be lowered, I take 17.5mg injected, my liver does not like a higher dose (I also take SLZ which I will have to stop). She said that they might after a year, just wait and see how I got on, but then a few days ago when I was talking to her she said that they might lower it straight away, so I will have to wait and see about that.

I don't know about anyone else but when I have to do my own score of how the disease is affecting my on a whole, I really hate having to do it. I think it is a very personal thing. I'm told that 0 is it doesn't affect me at all and then 100 is when it is really taking over my life. I sit there with pen in hand wondering where to put the line. I always tell them that I think that half way would be......well, it's there, it's not nice but I can cope with it......I then put the line according to how I am. At my first assessment she told me I had put it at 73. When I found out that I had scored 7.2 it really bothered me wondering if I had over estimated it and it had made my DAS score really high. After a bit of searching on the internet I found a site that was for calculating the DAS score, I put in my CRP and how many sore and tender joints I had and then kept calculating it lowering my global score each time. I ended up putting in 1 for my score and it didn't really lower alter the final DAS score much. I've come to the conclusion that what we think of how much it affects us doesn't really make much difference and they do the score on clinical results. I will start another thread with a link to the site.

The 8 paracetamols a day are helping a little, have actually been shopping and last night went out for a meal. I'm holding out as long as I can without upping my steroids, thinking that if I do need them for over Christmas the wean off period will be shorter.

Hope all goes well for you tomorrow Susan, fingers crossed that when you start Humria things get better for you soon. The nurse has told me that some patients get relief straight away from anti tnf's, lets hope that you, me and any one else starting to take them get the same result.!!

Take Care

Paula x

Hello you lovely people,

Today I have been accepted for Humira!! I had already done the chest X Ray bit and just had to give blood for the chicken pox reaction. I was also given a steriod pulse so hopefully I should feel better soon. I signed the form - I didnt like the reference to multiple sclerosis though especially as I act as a volunteer one morning per week in a wonderful residiential home nearby with mainly MS patients.

I gave been told it shouldnt be too long before I go ahead. I hope I can be established by Christmas as I am going abroad for two weeks but it does mean that if carefully timed I need not take the injection with me.

I did chat to NRAS and on Monday evening some nice lady member is going to ring with for a chat as she too is on Humira.

I feel a bit numb now but its great to know that other NRAS members are willing to share feelings, worries, fears etc.

I do find it odd that no consideration or examination is made of the feet, particularly as they are swollen with hurty toes - surely they should count toward the DAS score.

Warm hugs
Sue