Hi everyone, hope you all had a lovely Christmas, and a Happy if belated New Year to you all

Right, I had an appointment on Monday 9th with the nurse to finally sort out which anti-TNF I was going to be on, and to discuss injections etc. My consultant wanted me to start a s a p so that at my appointment in April he could see if there was any improvement.
After waiting for an hour and ten minutes and not even seeing Laura call anyone in for their appt I asked another nurse if all was ok, she said she would check for me. She went to Laura's room, then came back past me to the office. After another five minutes or so the receptionist came to tell me that Laura had booked today off but for some reason her clinic wasn't cancelled, and that although there are three consultants today they are fully booked and a new appointment will be sent. I explained the problem, and was told that if I dont hear from them in a few weeks to phone the clinic!!!!! Oh joy, how wonderful!! Yet another delay, this has been going on for around 8 months now and so it seems it will continue!!
I have had an appointment today with my GP and told him what had happened, but he suggested roughly the same thing. He prescribed me some amtitriptyline as I somehow can't seem to find the script from December. I told him I was in constant pain, especially at night, but he said that I was on the correct prescription, so that was that.

Oh, also at my last appt for the consultant I saw someone from his team who told me "you shouldnt take naproxen, lets cut it down to one a day" I told him they help me and that I was only told by Dr Garrood to take four a day, at my last appt, and this was a new drug for me!!!

Well, I suppose its now a waiting game again!!!

Hope everyone isnt suffering too much x

I am sorry you have received such shoddy and contradictory treatment. I agree that you should speak to the nurse by telephone. Hopefully out of courtesy she will give you a sooner appointment. I suppose everyone makes mistakes, and we are all human, so she should be forgiven for her error. However the least she can do now is to try to make it up to you by fitting you in urgently. As for the conflicting advice you have been given about the Naproxen, this must be so confusing and frustrating. I would listen to the (expert) consultant if I were you, but mention what the GP said to him/her. My prescription for Naproxen advises that I take up to 4 per day but your post has made me question this now so please let us know the outcome. I hope this all gets resolved soon. It just adds stress to deal with on top of an already difficult illness. Best wishes from Naomi.

Hello Doreen!!! Thanks for the reply, the helpline number just lets you leave a message for the nurses in general and doesnt go through to Laura, I havent been given a number for her. Maybe I could try the usual number but the receptionist will probably just say that I have to wait again. Maybe PALS could help, its just getting worse!! Will let you know what happens next

Love Barbara




Hello Naomi, thank you for the reply. Please dont let me worry you about the naproxen, I know its a usual drug for pain relief. I am on tramadol and pregabalin for fibro, so I think the other doctor thought that this should be enough, problem is he doesnt have RA does he??? I'll let you know what happens.

Love Barbara

Definitely ring PALS Barbara if the helpline is no good. I have used them a few times and found them to be very helpful, they can get to the people who we can't! As long as you explain what happened they will probably get you an appointment, or at least get Laura to ring you.
Good luck!

Love Doreen xx

Oh Barbara - how much longer are you supposed to put up with this diabolical treatment? I agree with those who say you should ring PALS on Monday and kick up a stink. I know not everyone likes doing this but the older I become the more I realise it helps to get things done. This is YOUR body wasting away and YOUR life too. Sorry to use such strong terms, but it makes me want to spit.

MUCH locve
Jeanxxx

Thank you for all the replies, I think I will attempt to get the clinic to give me an appointment, but if not, then I am going to have to contact PALS. There's only so much I can take, the last time I saw Laura she was surprised when I said I had pain starting in my back and going down my legs, she didnt think it was RA related. The last X rays show degeneration of the base of the spine apparently, so they booked a physio appt, it should have been on the same day as my appt with Laura on Monday, but I was so angry about not seeing anyone that I totally forgot and just went home!! I am just sick of being in pain and being told to increase the mtx, surely if it hasnt worked in 2 and a half years it wont now!!

Rant over!!! enjoy your weekend everyone x x

Hi everyone, guess what??? a letter from the hospital this morning, giving me an appointment at rheumy clinic next Monday 23rd. I have no idea if its for the specialist nurse or for the consultant as it doesnt say, there is no point phoning, they wont have a clue. I'll leave it til I get there WATCH THIS SPACE!!!

Hi Barbara,

That's probably the letter you should have got before you went to the non-existant appointment!
Good luck, hope you can get onto the anti-tnfs.

Love Doreen xx

Hi Barbara, I hope that you do get sorted, you've had such terrible treatment so far. Good luck for the 23rd. Glenys.

Good luck with the appointment, Barbara - see if you can borrow Jenni`s Red Boots!! That`ll show `em!

Kathleen x