The call came!! I could hardly believe it... my rheumatologist on the other end of my phone on a 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 a slightly less cross than I was, slightly less upset than I was but still hurting rheumatology patient! 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?
PS well you have to laugh otherwise you would just cry and cry and cry ... ... .... .... ..... ......