Well my friends

I am about to start on anti tnfs. Got very mixed feelings about it all. While if I speak the truth am frightened about taking the drugs, I know that somethings got to happen because I just don't want to keep being in the state that I am at the moment.

If you can remember earlier this year I posted that I had had a high alt reading (257), I had to come off all my drugs and wait for it to return to within normal levels. I was put back on MTX 17.5mg and after I convinced that consultant that SLZ had been the reason why I hadn't been sleeping well was told not to take it again. Well, it's not rocket science to know what the outcome would be. I had been injecting 20mg of MTX and taking 6 SLZ tablets a day. RA got really bad. I had to give in and I rung the specialist nurse in August to tell her that I needed some help. Had an appointment two days later, DAS score done and bloods taken. I had the grandchildren over from Gibraltar at the time and I was going to take them back end of August and was stopping with them until the middle of September. She gave me a steroid injection, told me to start taking SLZ (4 a day) and booked me an appointment for my second DAS score towards the end of September. She said that by then the steroid injection should of worn off and the SLZ should of started to work. My DAS score that day was 7.2 CRP 85. If I was sitting an exam I would of past with flying colours.

The steroid injection gave me a bit of relief, but nothing as good as I have had before. I had the second DAS score done and have been told that I had scored enough. I've had all if my blood test done, x ray done and am now waiting for the phone call with the go ahead. At my hospital there is no having to go to the PCT for funding, once you've reached the criteria the funding is there.

I was given the choice of Humria, Enbrel and one that you have by infusion (can't remember the name). It really is a dilemma trying to make my mind up of which one to choose. I have rung the NRAS helpline up and had a chat and had some literature sent to me (Thank You NRAS). It really is down to how the drug is administered, it really is crystal ball time on which drug will work. At the moment I am swaying more towards Enbrel. I don't want to be tied to the hospital for infussions, thinking here about going to see Julie in Gibraltar. Humria is fortnightly injections, so if you do have any side effects there is more in your system than Enbrel because that is given by twice weekly injections. Also Enbrel from what I have found out is easier to travel with.

At the moment I am finding it hard to accept that my RA is now at this stage. Everything I have read about DAS scores and people that take anti tnfs have all said that at that stage is classed as being servere....gulp...gulp.

I am dreading the day when I have to inject it, I thought I had accepted MTX and was at easy in taking it when it was added a few years ago, but I struggled to actually take my first dose. That obviously was done in my own time, but I am now faced when D Day arrives (dreaded day), I will have a nurse in my home telling me to do it, just hope I don't make a complete fool of myself.

My consultant for over a year now has been pushing me to go onto anti tnf's, saying I am a candidate for them and I have always said NO. But the reality is I just want my life back, or some sort of normalish life. I always try to play it down, put the smiley face on to husband and family, but it's just getting too much for me. Yesterday, for the first time I just broke down and cried in front of my husband. I sat on the bed sobbing, even that hurt, poor man he just didn't know what to do.

I think my biggest problem is that I just can't or won't accept that this stupid illness has progressed this far.

Sorry if I have gone on too much, but it's how I am feeling at the moment......did anyone else feel the same are am I being silly here?

Paula

Hi Paula

Reading your post made me well up, because I truly can see where you are coming from because I'm going through similar with the flare ups and the medicines not dampening me down! You are not alone with what you are going though, big hugs to you.

I go back next month to rheumy department, they have given me a nras booklet on biologics to read through - it scares me because this is the next level if you like. I weigh everything up and feel that I want a better quality of life but really worried about this next level. It all seems like a quick progression from being given one lot of meds to others thrown in the mix, guess we are all different.

I'm with with your thoughts about infusions - I know that I wouldn't want that or the twice weekly. The every other week sounds a good one for me. I've asked my husband if he would inject me (there's something I thought I wouldn't have to do)!!he is happy to help (hope it doesn't hurt)!

I must read the biologic booklet again to understand this more.

Your holiday next year sounds fantastic - that is something for you to aim to.
And think of us all back in the uk!!!

Take care
Jane
Xxx

Paula

My darling girl you have every right to be feeling down and having a good sob. We solider on with this dratted disease and endure so much but we are not invincible.

Yes moving on to anti-tnf's is acknowledgement that your disease is progressing but you now have the tools to fight it. To be honest I close my mind to the side effects and accept what ever they throw at me just to get a better quality of life. I am a fatalist and "live" for today.

I have tried Enbrel, Humira and the infusion of Rituximab but none of them suited me. However, I am now on a new anti-tnf called Simponi and it is not perfect but it has certainly helped.

I was scared to death when I had to do my first injection with a nurse watching. It was in pen form and I hesitated for what seemed ages (but must have only been seconds) before I pushed the button and I was so shocked that I hardly felt anything. In fact I was convinced I had done it wrong but I hadn't and I nearly split my face grinning when she told me "well done all finished". After my knee replacement a couple of years ago I had to inject warfin by needle for six weeks and I thought that was even easier than the pen. The needles are so fine nowadays you can hardly feel a thing. (Also I have a good amount of spare tyre to get hold of ).

They have to find the right anti-tnf for you now. You may be fine with the first but don't get discouraged if you have to try others.

I think we all grieve for the life we thought we were going to have but we now belong to an exclusive club of people and I think it has made us all stronger.

Good luck and keep us posted on how you get on.

Jackie
xx

Hi Paula, my heart goes out to you it really does, I know exaclt where you are coming from. I started on anti tnf in February, simponi, and it really gave me back my va va voom for a good 5 onths. Unfortunately, Ive had a flare recently but got it sorted fairly quickly so am now feeling better. Like you I was frightened of the drugs, thinking of the side effects etc, but from experience, to be able to get back a much much better quality of life is worth it.

Take care and look forward to seeing how you get on, sending a big gentle hug,

Heather xxxx

hi Paula,

yes you are right a Nurse does usually come out to your home at the start of using the Anti TNF. no they won't presume you can do it because you already inject, it is standard procedure that a Nurse is sent out to you, so yes you can have it done at your home if you feel safer. i do use the Epi Pen.

but because i was in such a state and my Rheumy Nurse knew this .. she suggested i go over to her at the Hospital as i know her and would prefer her to do it for me.

i'm slightly different inasmuch as i prefer to know as little as i need to re side affects and possibilites, if i were to google then i would have the lot!! i read posts on here before starting Humira as quite a few were on it at the time.

i did of course read the literature and also had an appointment with the Rheumy Nurse before i got started on it, my Hubby came into the room with me to fully know what the drug was all about and as back up if i couldn't self inject when i had to it.

i think my PCT were dragging their heels with the funding, my Rheumy Nurse were on the case for me and did keep me updated.

keep positive about it, and i am sure once you start you will have a good improvement.

there's no denying it is frightening, but i am positive once D Day arrives you will get through it.

please keep us posted,

and try not to worry too much.

Suzanne x

Hi Paula - a big hug and wishing you well. It's a tough decision to have to make and you're spot on being cautious! You sound like you're really thinking it through carefully, and therefore once you've made the choice you'll have confidence that you've made the right one and go forward with positive expectations. I so hope that in a year's time you'll look back at this and realise that it's worth it to have your life back. There's always light at the end of the tunnel, no matter how dark it seems atm.

Best wishes - sylvia xx

Hi Paula

I really understand how you feel. 9 years ago I was in so much pain from shoulders to my feet, I did not have a life, could not even use a door handle with 2 hands as fingers were so swollen. Tried a whole host of medications that did not work and was then put on Enbrel as part of the trials. It has changed my life, I still have flare ups but on a day to day basis my life is so much better.

I know it is scary, but I sincerely hope that you can get as much relief from Enbrel as I have.

Best wishes
Lisa

Hi Paula

Just to say I understand how you are feeling and I went through the same sort of thing as you in considering starting Enbrel. Reading about all the possible side effects is daunting and I too was concerned about the cancer risk.

However having been on Enbrel for nearly two years I can truly say that it has transformed my life. I know that is not the case for everyone but I can only speak for myself. I used to walk with a stick and could not walk far and within a week of starting my walking improved and I no longer use a stick.

The healthcare at home nurse was great and demonstrated how to use the epi pen, and then watched me do it. I have had no problems with the pen apart from an occasional bruise around the area.

I really hope that it works well for you, try not to worry, I look forward to hearing how you get on.

Best Wishes

Sue

Paula

I am sorry that you are in so much pain.

I would suggest that you opt for a steroid injection or tablets now. I went through the same dilemma when I first started anti-tnf's. I was in so much pain and I was told it could take a minimum of 12 weeks before the anti-tnf's start to work so they told me to have a steroid injection to keep me going. You could also have a flare after you first start the anti-tnf's so it is best to get your pain under control as soon as possible. They will monitor you over the coming months and if you have a steroid injection this will only last you about 12 weeks anyway and by that time you may know if the anti-tnf is starting to work. It will take at least six months for them to decide if it is working adequately and they will continue DAS scoring you.

My Rheumy team and adamant that you should get the pain under control by whatever means which will then mean less damage in the long run.

Take care

Jackie
xx

Thanks for all your kind words.

Well, I finally phoned up the hospital last Thursday morning after another bad nights sleep due to pain and stiffness. I just got to the point were it was just too much. I phoned about 9am and was lucky because it didn't go on to answer phone and one of the specialist nurses answered. Once I started telling her how I was the flood gates opened. I kept apologising and she was so good, just kept telling me to take my time, we were on the phone for a good twenty minutes.

I've been told that I can't take anti inflammatories with steroids and at the time in the morning I hadn't taken my meds She told me to take one 5mg steroid tablet and she would speak to my consultant, (he was in clinic that morning) to see what he wanted me to do. I got a phone call back around 1.30pm telling me he wanted me to start to take 10mg of steroids a day for a month and then I was to reduce it to 5mg. She said that by then I will be taking my anti tnf. All of my blood results have come back OK and they are only waiting for the x ray and they will chase it up. I can understand blood test taking some time, the T spot one had to go to Oxford and it takes time for them to get the results, but an x ray? It was done I think on the 8th or 9th October, its just sitting there waiting for someone to look at it while I am suffering.

The steroids aren't really doing much good I'm afraid, I am slightly better in the morning when I wake and after taking my dose of steroids I don't really feel any real benefit until around 4pm, when I can finally get up of the settee easier and I can walk without feeling that my legs are going to give way underneath me. At the moment I feel like a blob just sitting on the settee for most of the day, if I didn't have the internet to entertain me I think I would go mad. I feel guilty just sitting here but what else can I do? I think that 10mg of steroids a day is not enough for me at the moment, but I worry that if it is up too much it will take longer to wean myself off. Been told that they assess you after 12 weeks and if they don't think it is doing any good they still have a three month window to try something else. I don't know if they will give me a steroid injection and I will be able to keep taking steriods, the one that they gave me in August didn't work as well as they have before. The nurse at the time said she would give me the same dose that I have had before because it worked then, trouble is I've never been as bad as this before.

I have now gone past the being frightened of taking anti tnf's to be more frightened if they don't work. When I was told that I had reached to criteria after my second DAS score I wasn't feeling as bad as I was when my first score was done, I now realise that I was still having some relief from the steroid injection. At the time I kept asking myself if I was bad enough to warrant putting these drugs in my body, well after the last week or so I now know that I do.

Julie...I hope we both find the light at the end of the tunnel together. I'm sure that with having a CRP of 102 three weeks three weeks ago you will reach the criteria.

Paula xx