Hello again,

thought I'd give an update (more for my own benefit really to keep a record of whats happening, hope thats ok with you all).

firstly though, thanks again for your responses, I hope you realise how much it helps.

Jenni, I'm so glad you are in less pain at the moment. As Liz says, steroids are the drug we hate to love! It's great that you have been able to reduce your pain meds a bit. I can't take any of the morphine derivatives. In fact, I dont like any strong pain killers at all, I just can't cope with the spaced out feeling and prefer to put up with a certain level of pain...we are all different in that respect in how we react to different drugs. As I've said on your own post Jenni, I'm hoping and praying that the cyclophoswotsit is going to be 'the one' for you and bring some much neeeded and deserved relief from the RA. You are in my thoughts and prayers.

Liz, have you seen the rheumy yet regarding your elbow? That doesn't sound good at all. I'm hoping and praying it is just a strange reaction that can be easily sorted. It must be a worry for you, given your past history, let us know what happens at your appointment. I'm glad you have been able to postpone the neck op decision until after Christmas. Again, this must be a worry for you, I hope you can be guided by your consultants into a decision that you are as comfortable as possible with. It will be lovely (if exhausting) to have all the family at Christmas and for the period leading up to it and afterwards. I'm sure you are looking forward to it and I wish you a happy and special time together. I didn't realise you were waiting on hand surgery too! It's one thing after another for you, I don't know what to say Liz, it's just not fair. As you say it all gets too complicated and things have to be prioritised and yes I know the ostrich thing...you hope when you pop your head up it's all going to have somehow gone away! I also have wrist surgery and ankle revision surgery on the horizon but obviously thats all on the back burner for now. Take care Liz and please keep us informed, you are in my thoughts and prayers.

Rebecca, I'm so sorry your scan was a bit of an ordeal. I hope you are in less pain now and the stress hasn't caused a flare. When do you get the results? Let us know how you get on. Keeping you in my thoughts and prayers.

Anthea, don't panic there can be other reasons for the knee playing up. Are you having a flare of your RA?, it can still affect replaced joints apparently, particularly the knee as it is such a big joint. Did you have the patella removed and replaced during your knee replacement, apparently this is not done routinely (I still have my own knee cap) and rarely, in people with aggresive RA (like me) the RA can still act upon the knee cap, causing the familiar pain and inflammation etc so this could be another explanation for you. Mine was never "brilliant" but it has got progressively worse...its difficult to pin point now when the problem started but I don't think it 'acted' like my other replacements from day 1. As you say, best to get it looked at though and don't let them fob you off. Let us know how you get on. I hope and pray it is not an infection and something that can be fixed relatively easily.

Right, well the left operated knee still feels better than it did before the op (very strange really, given that the op was mainly just an investigation), although it is still very swollen and warm as usual, but my right 'good' knee has kicked off big style, sigh, it is very swollen, warm and painful. It was a nap that the RA would take off even more this week, which it has, but I'm disappointed that its chosen my other knee as the place to really attack. I'll just have to hold out until I can have more steroid and hope that does the trick but think it'll need injecting into the joint too. I can feel the fluid returning to the operated knee so not sure how long that feeling better will last either.

Regarding the op last week...I woke up on the day and the RA was bad, it was a real effort to get ready and by the time I got to the hospital at 7.30am I was quite breathless and my pulse was racing. I also had a bit of a sore throat. There was a bit of a hoo har then as to whether I was fit for surgery, the nurses semed to be in a bit of a panic but the anaethesist was lovely, very calm and listened to me when I said I get like this when the RA is bad. He agreed that it was probably the RA and not a reason for postponing surgery. He explained that he thought I should have a general anaesthetic as with a spinal block there would be a risk of the infection spreading from my knee into the place where the needle was inserted and it getting into my spinal fluid. You know I hate GAs but I didnt have a choice really, when he put it like that. However, then he told me that the neck xray had shown I have a slip somewhere on flexion but luckily not on extension so it should be ok during the procedure (I cant remember now exactly what he said but it was either 3 degrees, 3 % or 3mm...??). I knew I had some problems with my neck but I'd been trying to ignore them. I was first down, which I was glad about. Felt really groggy and dizzy when I woke up...did I mention I hate GAs?.. lol...but had no pain and best of all, I didn't vomit..think thats a first for me. I was up walking within a couple of hours and the RA had eased a bit too! The consultant came to see me at tea time and said if I really wanted to go home I could, so needless to say I said yes I'm fine. I did feel better than I had done for a few weeks and I'm convinced this was due to the huge amount of fluid that was in the knee being drained off. The consultant explained that he got lots of tissue and bone samples so he is hoping (and so am I) that they provide an answer. However, he stressed that the complexity continues and said I am so far left of field its unreal...he was further perplexed as apparently inside my knee joint did not look like an infected knee (I will have to ask him more about this when I see him as although I felt fine, I obviously wasn't fully complis mentis as I didn't ask my usual 20 questions!) but it looked like a very bad rheumatoid knee, which it obviously should not, having been replaced. He said the RA is definitely acting on the knee cap, in addition to any infection. He also said that how soft my bones are is very indicative of infection but given this, he would have expected inside the joint to look more infected...so still a bit of a puzzle I think. He wants to leave the stitches in for 3 weeks....seems a long time to me particularly as I'm not on any strong immunosuppressants at the mo. Anyway, a few hours later I was allowed home. I felt ok on Friday, just very tired and really the tiredness hasn't improved over the last few days but I think thats down to the RA kicking off again. I am just completely resting really. I took the big bandage off on Sunday so just have a couple of dressings on now. The district nurse is due out tomorrow to assess.

By the way, Liv is enjoying spending time with Irena, her English is excellent. They have been out and about non-stop with all the other students and their partners. Just a pity the weather has been so bad, we have had a lot of hailstorms.

Thanks for listening to my rambling!
Diane x

Hi Diane,

We must have been posting at the same time, as I didn`t see your post when I started to type mine!

Your poor knee! I do hope they can find out what`s going on inside it, after all the trouble you`ve been having. Three weeks seems a long time for stitches - hope the wound is not too sore. I`m glad you`re able to get some rest.

Hope the rest of the Spanish visit goes well,

Take care,

Kathleen x

update

results from biopsies not back yet.
I asked if I could have stitches out earlier so could have another depo to hopefully make me feel better over Christmas,
surgeon agreed so stitches came out on Friday and rheumy wants to see me tomorrow to check wound is healed etc and if happy will give me depo
feel a bit down..think its the being in limbo so to speak
Diane x

Hi Diane,
Hope all went OK with stitches out and healing well so that you may have the steroid jab you so need.

It seems such a long wait for bugs to grow, I remember it well. Let's hope that when the results are through, they will help direct the right antibiotics to your infection. I am thinking of you so much and do hope that you will well enough to enjoy Christmas with your family. Let's hope 2012 will be a better year for you and see you free of this horrible infection.

Our celebrations have started already with eldest son having arrived on Sunday - it's so good to see him, last time he was home from the States this summer I was so unwell with adrenal crisis and he is relieved I'm not like that this time!
Had the pre-op tests for my hand 2 weeks ago and they said op could be anytime as long as the anaesthetist is happy, though I am very anaemic and may need iron infusion first. Then there is the neck op which always worries anaesthetists

Still, my focus now is Christmas and feeding all the family and just enjoying being together.

My warmest wishes for Christmas and New Year to you and your family and to everyone reading this post

Take good care,
Love Lizxx

Hello Diane

So good to hear your updates

Im struggling here- one downer with the steroids is they dont last for long here....
Im going for some surgery myself in 2012 and preparing as best I can

I think Im going to try and look after myself and do find this hard to do without feeling selfish which is silly I know

So pleased with myself that I stayed out of hospital. Hope you do too- when is your next stint of surgery?

Jenni xx

Hi Diane

Wondering how you are and whether there is any news on the infection and biopsy results? I have been thinking about you very much. Hope the depo gave you some relief over the Christmas period.

Our family Christmas is finally over and we waved them all goodbye with much sadness as we had all had such a good heartwarming time.

Wont be able to post much for a bit as I'm having the hand surgery on Wednesday. So loads of luck for whatever happens next with you.

Take good care,
Love Lizxx

Not long til you hear now Diane

I do hope you get some clarity from the team on things.
I'm back in hosp
It's on the other thread to bore you later ;)

Keep going lady

Jenni xx

hi diane
pls excuse typing. been thinkng about you and see you were due to see cons today. do hope it went ok.

had hand surgery 11th jan. went ok i think, still in plaster and big metal plate over fingers plaster off tomorrow to have a check n clinic. unfortunately had adrenal crises 48 hrs after surgery but thanks to lifesaving steroids getting back on track.

also seeing neurosurgeon weds about neck situation urgency

however daughter gone to full term now, booked for c section next tues if nothing before, so cant think of anything else! surgically attached to my mobile.

jenni, do hope you are feeling a little better and thinking of you and your family - surely a good time due for you all soon.

diane do let us know how you are, thinking of you lots,
love lizx

Oh Diane, this is so awful for you!
I understand their reasoning for holding off the antibiotics but I just wish for your sake there could be a quick fix!
It seems so unfair to you that you have to stay off the RA drugs, hope your consultant can come up with a better plan on Friday.
Thinking of you.

Love Doreen xx

Well I went to see my rheumy consultant this morning.
Guess what?...yes STILL no further on!!!!!!!!
Actually he was really nice, explained everything (again) fully and I do understand why I have to wait (and wait and wait some more ).....but as you can imagine, life is a bit difficult to say the least with uncontrolled RA.
He has spoken to numerous rheumatologists, orthos and radiologists in the region and no one has ever seen anything like what is happening to me (well my femur really). Given the extent of the infection in the femur on the MRI scans, the number of white cells present in the synovial fluid, the softness of the bone biopsys and the appearance of the joint tissue samples under the microscope, no one can understand why a bug has not grown from all the different cultures. But the fact is it hasn't and so they are still flummoxed as to what to do for the best. The rheumys and orthos have discussed and considered the remote chance that perhaps it is not infected after all but then they do not have another explanation for what on earth it could be. Again, numerous 'experts' have looked at all my results and it's a new scenario for all of them. I suggested a fungal infection type thing (mindful of the rare anti tnf side effects) but they don't think it's that...I don't think they can test for that?...forgot to ask ortho surgeon that on Monday...must do next time I see him. The radiologists remain adamant that it is an infection of the replacement joint and secondary osteomyelitis.
Anyway, as we knew Rheumy cannot prescribe anti tnf or any biologic while there is any infection. I could probably have a DMARD but there are a couple of issues there..firstly I've been on most of them already. Only options left are Hydroxychloroquine (not sure spelled that right), but rheumy thinks this is too mild for me and won't do anything for the RA anyway or Leflunomide which he's not too keen on prescribing at the moment as he can't say how I'll react to it, given my previous record with dmards. If I have any sort of reaction, it could complicate matters with the infection. He doesnt think it will be that effective on its own either.
So basically, he wants to wait until the results of the MRI (I hope I don't wait too long for the scan) and will decide then whether or not to chance prescribing it. As he said, it's a balance then between potentially making the infection worse or letting the RA run rampant. Hobson's choice.
He said I can have yet another Depo at anytime now..could have had one today but I decided to try and hold on for another week or so...(worrying about the long term effects of the amount I'm having..but again its a balance).
So there we are... not an easy thing being in limbo but at least I can offload to all of you.
Thanks for being there

Diane x