Oh Diane, I am so very sorry that you are having to wait yet again and can only hope that they arrange the MRI asap. It must be soul destroyng to return from hospital each time, no further forward, even though they have xplained why.
My infection just showed as staphylococcus aureus which they said for 'normal' people wouldnt cause a problem, but the infection was rampant. But managing without a shoulder is easier than without a knee.

Dont be too brave about the depo, if you get too poorly it complicates everything including surgery. Leflunomide was the drug they put me on the year after the infection had cleared. They have now resumed rituximab after 2 years.

There has to be light at the end of your tunnel - it just cant come soon enough. You are being amazingly stoical.

Take god care Diane, thinking of you,
Love Lizxx

Thanks Jenni, Doreen, Liz and Kathleen again for your kind thoughts...as I keep saying it does somehow help to know others can appreciate the situation.

Jenni, I'm not sure what you mean about the mayo clinic??

Liz, firstly, just wanted to say I'm thinking of you and your daughter and her partner today and praying that all is going well. Hope to hear from you with the good news when you can.

Well some good news...I had the MRI scan yesterday!! I had to get there for 8.30am which was a big struggle but I did it and was home again just before 10am. Had a little chat with the radiographer (who I know) and apparently the images looked pretty much the same as last time (3 months ago), with an obvious abnormality in my femur.. crucially the contrast agent enhanced the suspect area again which apparently is very indicative of infection. Of course, the scan will have to be reported on by a radiologist before we know for sure if there is any change. Then another big conflab by the team I expect before I'm told of the way forward.

Liz, I know they really struggled to identify the bug responsible for your infection and it took ages but I can't remember now if you said they actually took bone and tissue biopsies to test (or was it just the fluid?)...sorry for all the questions...just trying to make sense of any of it of what's going on...although I'm not sure if that's possible since the experts can't make sense of it.

will keep you all informed

take care
Diane x

Oh Liz, so pleased to hear your amazing news.
I've replied on your thread but still grinning here..congratulations to all of you once again!

Thanks for replying with that information. As you know, I don't have any lumps or anything to drain (as yet)...it's perhaps still relatively early stage infection with me??.....if it wasn't for the white cell scan (which I had as my now nearly 13 year old ankle replacement is loosening) showing up the problem with my knee replacement...the swelling, pain and hotness would maybe still be being put down to RA acting on my knee-cap and I perhaps wouldn't have had all these other tests and procedures...who knows.


Anyway Liz, you enjoy your gorgeous grandson. I hope things are relatively ok RA wise for you at the moment.

Diane x

Ok after spending the last few days in bed, I give in, give me another Depo! Left a message on rheumy nurses answer phone.
Would you believe a small lump has appeared on my big toe !( red and sore to touch) on the left (same side as infected femur)....suppose I should mention it in case it's significant? What do you think?
Waiting for appointment to discuss latest MRI and way forward. I expect I 'll wait a while whilst they have a mdt discussion. Hate being in this limbo.
Diane x

Hi Diane,
Sounds like that depo is definitely needed asap. Yes, please do mention that lump as it could be significant, Infection has all sorts of ways of showing itself and needs to be looked at.

Think they should give you an appt quickly givven the circumstances, I do hope so. Please let us know how you are.

Take ccare,
Love Lizxx

Hi again,
rheumy nurse rang me back yesterday afternoon to arrange Depo for tomorrow morning. I mentioned the lump and she said the consultant would probably want to look at it before allowing the Depo to be given. No change in it size wise or redness wise this morning but not really sore. Anyway I rang the GP on the off chance there was an appointment available as I thought I might as well get her opinion on it. Luckily there was, it is paronychia (infection of skin near to nail cuticle). She doesn't think it is related to my knee and femur but said "who knows with you". She prescribed antibiotic ointment as didnt want to give oral antibiotics in case they interfere with my knee problem. She said she didn't think it would stop me from having the Depo but obviously it will be up to my rheumy consultant. So I'll go tomorrow and see what's what.
( sorry for the boring saga, just wanting to keep a record of all what's going on regarding this for my own benefit. I'm still trying to make sense of it all though not having much success. Even the GP said she's keeping out of it as it's far too complex and strange!)
Diane x

Yes Diane, Hannah is still enjoying being in Canada. She is working at a ski resort and gets out snowboarding on the slopes as often as possible. She has made lots of friends there , it seems a lovely place. She is contracted to finish in the middle of March, may stay a bit longer, and is busy planning what to do next. A trip to Miami and Las Vegas was mentioned !
That's lovely that you have Sophie home for a few days. Is this her 2nd year at uni?
Hope you get the depo tomorrow and can enjoy the school play.

Love, Doreen xx

Hi again,
Doreen, it's lovely to hear about Hannah. It sounds as though she is having a great time, good for her. She might as well visit as many places as she can while she is over there and has the chance.She must be making some wonderful memories for the future too. Will she be home later in the year?
It's Sophie's 3rd year, although its her 4th year of being away from home as she did a year of a music degree before swapping to chemical engineering! Looking back, the time has gone quickly.

Well bad news is I didn't get the Depo yesterday and 'good' knee is now huge. Lump on toe is exactly the same, the antibiotic cream doesn't seem to be having any effect so I wonder if it is the right diagnosis.
But
GOOD news
Rheumy consultant told me latest MRI scan showed no change so he has discussed situation with my surgeon and the radiologists etc and is happy for me to get back on some treatment, just a Dmard, can't go back on Enbrel or anti tnf unfortunately. So all being well, I should be starting Leflunomide next week (trying hard to feel positive about this as don't fancy this drug at all for some reason, but I really need something and have no other choice). I can probably have the Depo next week to help while Leflu kicks in.
So came home from appointment and chest X-ray and went back to bed ( was exhausted and trying to feel better for Olivia's play). I had just dozed off when the ortho surgeon rang me. He sounded much chirpier than the last few times I've seen him as he is apparently encouraged by the MRI results. He read the report out to me but being half asleep I didn't quite get it all so will have to wait until I see him or hopefully he will send me a copy of the letter he writes to GP as he has been doing that each time. The gist of it is that the femur and tibia are both very abnormal and of an appearance that has never been seen before, there is lots of odema in these bones, particularly the femur and holes in the bones that are filled with fluid, there is bone loss and holes under thereplacement parts as well as the usual extensive synovitis, but since there is no change in the suspect area, the plan is to closely monitor me for now and to watch if the RA drugs affect it in any way. He said the protocol for rheumatoid patients is being rewritten because of my case ..will have to ask him more what he meant about this when I see him. They cannot rule out infection but are no longer absolutely certain that that's what it is ( I think I've got that right). So as you can imagine I am very relieved if there is a chance it is not infected and am praying this is the case (will deal with what the state of the bones mean in terms of outcome in the future).
So positive news at last. Hoping the Leflu helps the RA and I can have Depo soon. I'm spending so long in bed, I 'm wearing the mattress out!
Thanks for listening
Diane xx

Kathleen,
sorry we must have been typing at the same time again. I've got the IPad in bed with me but it takes me ages to do a post.

Didn't get the Depo ( see above) but did get to see the play. It's very awkward getting into the school in the wheelchair ( have to get out to negotiate a couple of steps) and I wasn't sure I'd be able to manage this time but I was determined to go and with the help of my lovely sister in law, we did it. Wow it was so worth it, for a school production it was absolutely amazing, some talented youngsters about. Olivia was part of the show band and had a few solo parts, the music was fantastic too.

Its so nice to hear about the boys. That will be lovely to celebrate Ethan 's birthday with him and the family. Hope you have a great time; I'm sure there'll be lots of cake and party games involved! Wow, Jacob playing mini- rugby already. I bet he loves it! Will you get to watch him while you're in York? What football team do they support?

Hope things are ok RA wise with you at the moment?
Diane x

Oh Diane, so sorry you didn't get the depo yesterday, hope you can get it soon.
That's good news if you don't have infection but you still don't really have a way forward. Seems like you are making medical history though! I bet you would rather get your "5 minutes of fame" some other way!
Good luck with the leflunamide, I hope it works well for you. I didn't get any side effects at all from it but it just didn't work for me.
Yes, Hannah will be back home sometime in the summer, jobless and dependant again!

Love Doreen xx