Oh dear Paula you have really been through quite a trauma and it sounds like they have neglected you with not stopping all your drugs at the sometime.

21 months ago i was on leflunomide and after 2 1/2 weeks collasped and was admitted to hospital with liver failure. My ALT was 81 on admittance and gradually climbed to 265. I was very unwell with stomach pains and sickness and felt awful. I was in for 2 1/2 weeks. All my RA drugs were stopped immediately apart from my co-codomal for pain.

I hope you will get some answers soon.

Love Shirley x

Hi Paula,

Welcome back! So sorry to hear about your trials and tribulations and big slapped wrists for your rheumy team over your bloods monitoring. I have often wondered how good this system is. Having spent a good deal of my working life in big, naturally dysfunctional organisations I've never really trusted it to work properly.

Although I'm probably a right royal pain in the bum I always ring a couple of days after the blood test and ask if its alright to keep taking the drugs. The receptionists at the surgery are always good for a laugh and we know each other very well now! When I went to the dispensary yesterday the lass had my package ready and waiting for me, this is when you know you spend too much time at the docs.

Maybe this is one of the advantages of living in the sticks, my surgery monitor me and not the rheumy team. I most certainly wouldn't trust a big hospital system to work properly all the time, am I just an old cynic and getting worse as I get older?!

If you're feeling up to it maybe a complaint is in order. Sometimes its the only way to make them sit up and improve the way they do things.

Take care and hope you're feeling better soon.

Sara
x

Gosh Paula. what a poor service. It makes me realise what a good G.P, dep. I have got! My results are always sent to me a week after my bloodtest. There is always a reasuring message to say that all is fine and if there is any problem I am told to make a telephone app. with the G.P.
Hope you are soon back to normal, Zena x

Hi Paula,
It does sound as if your treatment has been very shoddy.
I don't get the results of my blood tests, apparently it's "not something they do". I will only hear if there is a problem.
I hope you get everything sorted out but I too think a letter of complaint is appropriate.
All the best
Mary

Thank you all for your replies I do appreciate them.

Was surprised to read that Shirley (Crazychick) was rushed into hospital with liver failure with an ALT reading of 81 raising to 265. I realsie now that I was not being a drama queen after all. The thing is I didn't feel ill at all. In fact was feeling really well, just goes to show how different we all are.

After reading post on here and other forums I have had nothing but praise for my RA team.

I saw a specialist nurse 6 weeks after being diagnosed (we have three), was refereed to see Physio and OT. Both teams specalize in RA, unlike some hospitals who deal with any patient with any condition.

I have had two appointment with the foot man and been given inner soles and then inserts for my shoes.

Last year I saw the lovely Rachel (OT) who gave me such wonderful care and support when I wasn't doing so well. I told her I had trouble with my neck and shoulders sleeping and had been wasting money on pillows trying to find the right one, next appointment with her there was a variety of pillows from the back clinic that she got for me to try to see which one was best for me. She arranged for a perching stool to be delivered free of charge to my home. She did offer to come to my home and assess what else I needed. She filled in my application for my Blue Badge for me, asking me the questions and writing down what I answered. After I had started injecting MTX and was feeling better, we decided that I no longer need to see her, so I was put down for a review 12 months later, but if I need to see her before I only have to ring for an appointment.

If I ring the helpline in the morning I always get a phone call back during the day.

If I have a problem the nurse always gets me an appointment within a few weeks to see one of them (half hour appointments).

The consultant keeps a few appointments free for emergency each week, on getting my latest blood results I was given an appointment to see him two weeks later.

We always have the same nurses in the monitoring clinic and we always have a chat, they are more like friends now than nurses.

I like the appointment system that they have. You don't book your appointment with the consultant months in advance, you get a letter asking you to ring a few weeks before your next planned appointment. This I think is such a good idea, this means that the consultants appointments are not booked up for months at a time, so if a clinic is canceled for some reason, or you can't get to your appointment and have to cancel, you don't have to wait months for another appointment (hope that makes sense).

The list really is endless.

I have given much thought about making a formal complaint about it all but have decided not to. I don't want a black mark so to speak on my records that I am a patient that makes trouble. If I had had bad service from a shop, yes, you complain, make a fuss and then don't go back to that shop. I can't do this with the hospital, I need them. I did watch the Junior Doctors programmer on one of the BBC channels earlier this year and one did say that they would go the extra mile for a nice patient, rather that a moaning ungrateful one. Wrong I know but they are only human after all.

We all make mistakes and I was told by the nurses that the doctor checks the results and then rings them, I can only think that this would be the consultant. I will when I see him on Thursday ask what went wrong but I am not going to make a song and dance about it. I am going to write all my concerns down on a paper and tell them as soon as I go in so I won't forget anything.

After giving them so much praise I am still disappointed about the whole thing. The fact that they didn't check to see what other medication I was on, I had injected myself with MTX 5 times when I shouldn't of. The fact that if it had been noted when it should of been I would of been four/five weeks down the line before I went away, my ALT could of been back within normal range before I went away. I would not of had the worry that I had of what was happening to me with the added worry of being out of the country. I am not ashamed to say that I did break down in tears on the phone to the Sp.Nurse at the thought of just surving on paracetamol's whilst I was away. I cherish the time that I am with my grandchildren and I did not want them to see their Nana in pain, thats why I asked for the oral steroids. Something that I said I would never take, but I have said that about wearing Grannie shoes and taking MTX. I think with this illness, never say never. It really is a good job that I was going away, being told in Feb I was going to be put on two monthly monitoring, or I could of done 8 or 9 injections before it was pulled up.

The only good thing (if you can call it a good thing) that comes out of all of this is when the thought crosses my mind of 'Do I really need these drugs, have they made a mistake' well the pain that I was in after only one week verifies that I do need the drugs. The evening before I took the first lot of steroids I could harldy walk with pain in my feet and ankles, this shocked my daughter and by the morning, well I just didn't want to get out of bed because it hurt so much to move.

Just want to add what my wonderful husband (not at the time) said.

After taking the steroids and paracetamol's in the morning the stiffness and pain would start to wear off. One day it didn't, it just got worse, I couldn't remember if I taken them that morning. I think after four years of doing it you can sometimes be on auto pilot. Was worried that the RA was getting worse and that the dose was not enough. When we got back to the apartment I worked out how many I had taken, counted what I had left and from that I realised that I had taken them. Told him and his comment not only shocked me but I told him it was an utter insult to me...............Because you couldn't remember if you had taken them or not, do you think it was all in your mind. .........I felt like saying to him.....See my foot......and them kick him somewhere that hurts (meat and two veg here ladies) and then ask...........Well, you saw the foot coming and knew it would hurt, so is the pain all in your mind...............Fortunatley for him I am too much of lady to do that and I do love him really.

Thanks for reading!!!

Paula x
P.S. Jean I'm looking forward to meeting you too!!!!