Can someone please explain what is fibrosis? Is it to do with the lungs or something else? Thanks from Naomi.

I saw this post Sheila when you first put it up in July, but with having the grandchildren here I didn't have time to reply.

The lady over the road from where I live died of this in June. She had some sort of problem with her kidneys and the doctors kept trying her on different tablets to treat it, nothing work but one of the very rear side effects of one of the drugs was Pulmonary Fibrosis. I use to go and sit with her while her husband went shopping and she kept saying that she would never forgive her GP for giving her the tablets that caused it. I only found out after she died that they had mis diagnosed her and the kidney problems were in fact an inbalance with her estrogen levels (she had had an hysterectomy some years earlier). Once they realised and gave her something to boost it the kidney problem went. Anyone reading this who's had a hysterectomy take note!!!!

After I found out, silly me googled it and yes one of the causes of it is RA (someting else about RA I didn't want to hear). I would think though that the consultants would be very aware of this so if we report anything wrong with our lungs they should check it out immediately. This comes from the woman who's being experiencing pains in her chest on deep breathing since May. was admitted to hospital May told it was a pulled muscle, been to GP's twice in the last few months and is now waiting to see consultant in a few weeks time, but that's another long, long story!

Paula x

Hello Sheila

I hate taking all of these drugs as well. Before I had RA I would have to of had the headache from hell before I would even think of taking one paracetamol and now I take 70 odd tablets a week, most of them toxic. I have often wondered what would happen if I just stopped taking them, it's what I call ' a need to know basis'

For me the thought of this terrible disease just going wild in my body is enough to make me see sense. Trouble is we are taking drugs in the hope that it will control/slow down the disease at the risk of causing other problems, it really is a catch 22 situation. My crp readings April, May, June and July were high. I had a steroid injection mid July to try to ease things, even after having that my crp in August was 37, which is still high, been told they like to keep it under 10. The consultant in July wanted me to start injecting MTX (I take 20mg orally at the moment) but I put it off until we had taken grandchildren back to Gibraltar, just incase I did have some reaction to the supposedly increased amount that will be in my system. I didn't want them to see me ill. I really can't see it making any difference but only time will tell. I suppose the next option if it doesn't work will be anti-tnfs and I really don't to go down that road. But what choice do we have if we want some quality of a normal life?

The pack arrived last week and the nurse is coming out on Friday to show me how to do it. It really bought home to me how toxic MTX is when I saw the spillage kit, goggles, gloves and a bag to put my clothes in for them to dispose of if some of the drug gets on them. I am going to voluntarily inject this stuff into me soon, very frightening!!!

Paula x

Hello Shirley

I think sometimes we all get in the Moaning Minnie mode, I know I do anyway. I was diagnosed over three years ago and I still can't accept it all. I get into the 'why me' mood. I really did look after myself, going to the gym, not smoking, healthy eating etc etc and I was convinced that I would be looking forward to being fit and healthy right into old age, well all thats gone out the window now.

I have been lucky with all of my meds up to now, no side effects at all. I've been on SLZ since I was diagnosed and have not had any of the reported side effects, not even the orange wee. I started MTX a year last May, I was dreading taking it after all of the things that I had read, was in tears when I first took it, but I was lucky again, no side effects.

Because I am not doing so well at the moment they want me to inject MTX then they will be 100% certain that none of the dose is lost while my body absorbs it. The nurse told me that there will only at the most be a 2mg difference and I can't honestly see that making much difference at all. If it doesn't I would hope that they may add another DMARD rather than going on the anti tnf route. I just didn't want to take the risk while I had my grandchildren here of messing with the dose just incase I did have a reaction to it. Everyone must have a limit before their body starts to say no. Thankfully the steroid injection did it's magic and I enjoyed several weeks of feeling normal. I was grateful for that, but in some respects it is a bit cruel because I had a taste of being normal for a while and I am now coming back down to earth and the RA is rearing it's ugly head again.

I will let you know how I get on tomorrow and if I manage to stab myself.

Love Paula xx

Oh Jean thank you nice to know that I've been missed.

How did you know that you had an increase of 2.5mgs?

I've been told like you said that some of the dose gets lost whilst it makes the way into my system. I've been on 20mg for months now and the injection is the same. I am having pains in my ribs now along with all the other bits that hurt and my GP does think that if I do get a bit more in my system it may help this.

I have spoken to the specialist nurse about the rib pain (I also get a tight feeling across my chest if I take in a deep breath as well) because the steroid injection did nothing to help there. I couldn't understand if it was inflammation in my ribs why the steroid injection worked on other joints but not there. She's booked me in to see the consultant early October because she is not really sure. She said that he will know more so I will have to wait and see. At the moment the pain in the ribs is bad, not all the time but when it hurts it hurts. It made me scream out this morning it hurt so much.

Forgot to mention Sheila. I would rather have the injection at the hospital but its all the hassle of going there once a week that puts me off. We sometimes go away mid week (got a motor home) and it really would restrict us when we could go. I'm sure once I've done it it will be OK. If it needs to be done then I will just have to get on with it.

Love Paula x

Hi Girls

My consultant discussed the increase with me and said 2.5mgs would help a lot - and it did.

Honestly - doing the injection is as easy as eating a cream bun - probably easier and so much better than the old pens which I didn't like at all. The actual needle is only a couple of cms long and very, very fine. Provided you do it in your tum, you won't feel it. When my hands are very bad, Steve does it for me, and he is just as good at it as I am!!

Re the rib pain. I think this could be costochondritis. I have only had it a couple of times, but I know Jenni has many problems with it. It may well be that the increase in MTX calms it all down. It's amazing the difference injecting makes - just taking a very small extra amount into your system can help enormously.

Love Jeanxxx

Well done Paula. It will be a doddle from now on and you don't need to be worrying about it anymore. Hope you enjoy/enjoyed the cream bun

Sheila x