hi Lyn, only just caught up with this thread and can understand your frustration. Hope things get better for you and you get the drugs/care you need.

Hello Lyn

Been reading whats been happening to you and it is so wrong. I know that they are suppose to see people being referred by GP's quickly to catch the disease early, but at what cost? You and others like you should not be put at the back of the queue when you clearly need urgent help. I just wish you lived near me and could attend the same hospital as me. I realised quickly from reading others posts that I am having good care. It is a teaching hospital and all of the extras that I should receive is offered to me. I have been told that my consultant leaves a few appointments free for emergencies on his Friday clinics.

Can you request to see your old consultant? I would thing that we would be able to choose who we see, I know we can ask to attend another hospital so I would think we could ask to see a consultant of our choice, just a thought.

Hope that things do improve for you soon.

Sending a big gentle hug your way.

Paula xx

Hello Lyn

Glad the appointment was useful at the Hospital and the RA nurse has 'sorted' you a bit. I am
sure that you have been shatterred with worry and pain.

Heres hoping the injection and other medicines work for you and you have a great night sleep.

With love

Rose x

Hi Lyn

We fare in this system by coming on here and having people like you to guide us through it.

Anne x

Hi All

Thanks again for all your good wishes, much appreciated

This is my first time for a depo so not really sure what to expect! However, I didn't sleep well last night so that suggests the mega dose of steroid has reached my bloodstream ... it's a start! I feel a little better today and some of the inflammation seems to have subsided slightly. Keeping fingers metaphorically crossed that any improvement will last until we can work out whether Enbrel and Leflunomide will do the trick.

My knees are still a mess but that was to be expected. I see orthopaedics on Monday so that's sure to come with a tale to tell!

The nurse said that Rituximab might have to be my step ... I learned through reading up last night that Rituximab is ineffective with sero-negative patients; that was on the drug company's website! I see someone has some reading up to do!!! They're supposed to inform us not the other way round for goodness sake

My magic wand is working for now! Looks like I will have to keep it under lock and key in case Rich is after a new one!!

Thanks again for your concerns,

Lyn xx

You'd better be OK for Thursday, young Lyn! xxxxx

Hi Lyn - I hope the depo has made some difference for you. Any joy?

Julie xx

Hi Lyn. Only just caught up with this, sorry to hear you have had such a rough time.
Lots of love,
Jan xxx

Hi everyone,

Thank you all for your kind thoughts over recent weeks, it really makes living with this cruel disease so much easier when you know you have friends who understand.

As I am up in the middle of the night I thought I would update you, not that it is particularly good news but for anyone else suffering at the moment you are, at least, keeping me company!

Well first off the depo injection (22nd Feb) just didn't work. The slight improvement was due to the extra rest whilst I waited for the damned thing to work! Next stop Orthopaedics (28th Feb) about my right knee. That is to say that it would have been my right knee had it not decided it wasn't going to lock anymore in the lead up to the appointment. This particular consultant is very keen on dealing with what you have been referred for and nothing else. Anyway not to be deterred and armed with a barrow load of reasoning I set to and explained that the problem was now mainly with the left knee. At this point he looked aghast and reminded me (like I needed reminding) that he operated on that in July. Well yes you did but it's no longer okay (and indeed never has been!). Explained rheumatologist looking into radio-isotope (yytrium) synovectomy at Wrightington. Yes, yes good idea ... well it was for him because he could, yet again, discharge me. If this isn't available or doesn't work it will have to be a knee replacement for the left knee it's too badly damaged for anything else. Long traipse across the hospital to car park.

A week last Monday (7th) I emailed the rheumatology nurse to explain that the depo hadn't work, Leflunomide was still causing nasal sores, mouth ulcers and cold sores. ESR continues to creep up and is now at 38. Okay not horrendous but also not very reliable (being sero-negative). She gets in touch with rheumatologist and says she will email me when she hears anything. I wait, I wait and I wait. Patience is something we have to have in abundance! No response by the Thursday so I send another email. Rheumatologist hasn't replied but nurse will chase her up on Monday (14th). I then find out that nurse actually forwarded my email ... oops, it was rather candied and just ever so slightly sarcastic! My credibility as a sensible person just flew out of the window!

Monday 14th I go for my routine bloods at the surgery. I return to find an email from the nurse. Doctor wants to do some more blood tests, in particular anti - ccp. Arranged for Thursday (17th). Rheumatologist is going to ring to discuss treatment options. Now early hours of Saturday and no call!! Am I surprised ... no, it's what I have come to expect which is rather sad really

I saw the nurse on Thursday and we had a long chat. Seems doctor has been back through my notes to 2000, that must have taken some doing; if she'd asked I could have have sent her my list of treatments from 1995! But she didn't ask. She insists I have never been on 15mg of methotrexate, so clearly she can't read that well either. Her suggestions are Rituximab, Humira, Azathioprine or Ciclosporine. Completely ignoring the fact that Enbrel works well and needs something suitable with it. She will not put me back on Methotrexate due to neutropenia which she insists happened at 10mg, but it was 15mg, I have it written down. So now I wait for blood results and advice about where we go from here. The nurse has increased my Prednisolone to 10mg to hopefully reduce the problems but, of course, as we know, that deals only with symptoms. Meanwhile I'll just hang about incurring more joint damage (and eating Smarties to empty tubes!!) ... no rush, you just take your time. I have been faffing about with neutropenia, flares, ops and ineffective meds for the last 12 months.

I think this is the point where I say enough is enough and seek a second opinion. I'll see what the blood results are like, who knows perhaps I'm sero-positive now!!

Hope I haven't sent you all to sleep

Lyn x