Hi Lyn, so sorry to hear that you are still not much further on. Do you know which options you would consider if they are offered? Thinking of you.

Julie

Hi Lyn

Things never get any better do they ? I agree, I think you should seek a second opinion, and you will be armed with the new blood results. I don t want to give you a big head Lyn but you really do know what you are talking about and I do feel to an extent you are being undermined which just is not right. You have really been through the mill over the last twelve months, long enough !

Hope the sun is shinning your way, pretty good down here in Kent.

Take care, Julia xx

Hello Lynn

So sorry that you are not really any further forward. Very very frustrating , annoying etc etc.

Get the second opinion. Good luck

I am also sero negative.

Rose x

hi Lyn,

sorry to hear you are still going through the mill.

my Depo i had a couple of weeks didn't work well, although it did bring my CRP down but the pain says different. also i came out in hives for the second time after having one ( only about 4 and they go in a couple of hours ) so not sure if i will be allowed any more. i see the Consultant next week for my 4 month follow up so will check then.

i agree i thiink it's time for a second opinon,

your GP should have all the Consultants available out there albeit privately.

just hope you can a good one who can re-assess you.

take care,

Suzanne x

The call came!! I could hardly believe it... my rheumatologist on the other end of my phone on Monday afternoon. Do you suppose she’d got wind of the fact I might be considering a second opinion?

Anyway up, she was ringing to update me on two main issues but had waited to see if the increase in prednisolone that I started last Thursday, had helped calm things down. Well thankfully, indeed, yes it has, I was pleased to be able to report. I decided I wasn’t going to pussy foot about nor bother with the telephone voice (why do we do that?!) so what she got was me, a not particularly happy bunny in what has become a stressful unnecessarily elongated situation.

I can’t have yttrium synovectomy on my knees because they no longer do the procedure at Wrightington. Instead they do something called Osmic acid (analogous to sulphuric acid, eek , remember that from chemistry and not sure I want that floating round my knee caps!!) ... sounds very 22nd Century! However no-one knows with any certainty how successful, or not, this might be for me given the amount of joint damage I already have. Also, because of its very nature it ‘may’ impact on future knee replacement. In view of this Wrightington have suggested I go for the knee replacement now (now? As in today? Tomorrow?! More eek! ) rather than fiddle with something that may not have lasting effect etc.. Hmm....

However, the rheumatologist also has to consider treatment options and how we go about this if surgery is to be taken into account with the stopping and starting of meds. Clearly the Leflunomide isn’t doing the business so I can come off that if I wish. She could put me on Rituximab but if I am still sero-negative it may not be as effective as it could otherwise be. If it turns out I’m now ‘positive’ it could be a different story! Have to wait a couple of weeks for results. Already had two anti-tnfs so can’t go further down that road and also if I come off Enbrel to ‘try’ Rituximab I can’t then go back on it at a future date. As the Enbrel does work, just not on its own, seems a shame to give it up. I could apparently keep the steroids at 7.5mg with the Enbrel (was on 3mg for last four years) and this may keep things controlled. Do I want to be on this amount of steroid for the rest of my days (which I’m hoping to have a few of yet!!)? Previous consultant said the dosage must be less than 5mg for long term use. Then there’s Azathioprine, Ciclosporine and Methotrexate. We don’t seem to be able to find out whether I have ever had the first two so that’s useful isn’t it?! Think I’ve had the first and probably not the second! She might be prepared to try a ‘baby’ dose of Mtx to see how it goes. What on earth is a ‘baby’ dose? I’ll assume she means, low dose, 7.5mg! I also need to get off the ruddy Naproxen, currently at a gram a day!! GP not happy with that at all!!

So, there we go in the ongoing saga of less cross, less upset but still hurting. Think I will cast it all aside until I get the anti-ccp results. I’m back at the hospital in the morning for yet more blood letting ... one sample went in the wrong coloured tube!!! Would you ‘Adam and Eve’ it?

Lyn x

PS well you have to laugh otherwise you would just cry and cry and cry ... ... .... .... ..... ......

oops - 'sense of humour'

Well Lyn it does now appear that progression in now being made, and thank goodness you ll only hurting Yes its good to be blessed with a sense of humour !

There are certainly many issues to be considered, and then deliberation can be made when the results come back.

Hope you continue to feel little better, look forward to hearing the update.

Julia xx

hi Lyn,

Glad the consultant finally got back to you and is thinking of a treatment plan.
It may be that the small mtx dose will work better than the leflunamide, here's hoping!

Love, Doreen xx

Chuck it all down the loo, Lyn, and have a couple of bottles of red tonight - or maybe three or four!! Don't worry everyone, Lyn knows I jest - we have spoken!