Hello diane

Reading your saga I'm pleased there's no infection so now there are other options on the table.
Luflumomide I had
No side effect
No effect sadly at all!
But others are much better on it

Feeling miserable stuck in hosp again so signing off now

Jenni xx

Doreen, I bet you can't wait to have Hannah back anyway. I wish her well with her job hunting, it seems to be very difficult at the moment. Wonder if she'll have the wander lust now and want to be off again somewhere else before too long?
Kathleen, I know what you mean about rugby, don't think I could watch either! Olivia used to run cross country for the school so I 've also had my share of cheering on in all weathers, well more often than not cold and raining! I saw one of my nephews play tag rugby when he was younger and as you say, that's ok. Ethan sounds a real little character. By the way, we're all Evertonians you'll no doubt be pleased to hear!

Diane x

Hello again,
My tummy's not getting on too well with the leflunomide but hoping its still early days and things might settle.
I hope I can tolerate it as its my only option at the moment.
One good thing, the last Depo I had has taken some of the swelling out of the "infected" knee which hasn't happened with the previous depos, it's still very warm though...the mystery continues.
Diane x

Update.
Still no definite diagnosis re what the problem with my knee replacement, femur and tibia is.
Having another MRI on 29th May to see if 'infection' has spread further or not. Then hopefully decision will be made as to how to proceed.
RA not good, Leflunomide doesn't seem to be doing anything (except some side effects!) Esr still very high.
Spending most days in bed, feel weak, breathless, anxious, just generally unwell blah blah...think it may be to do with overdoing the Depos ( been having them every 6-8 weeks), awaiting test results.
Life just totally on hold...not good.
Hope to have some better news soon xx

Hi Diane

I was so sorry to hear you are still no further on with sorting your knee replacement, femur and tibia out. It seems to have been gong on for so long now, you must be going out of your mind.

I really hope you have some answers from the MRI scan, I will be thinking of you on the 29th May. I took Lefleunomide for a short while and felt so dreadful on it. Enbrel is my absolute lifeline but I have had awful infection problems on my lungs the past 12 months and have missed so many injections. Hopefully I am clear of infection now but time will tell. If only you could get back on anti-tnf!!!

I really hope better days are ahead for you....I am sending your leg a big get well soon with a smiley face

Love and best wishes
Rebecca x

Hi Diane,

I`m so sorry you are still no further forward with your leg problems. You must be so fed up and tired of the whole situation - I wish I could wave a magic wand for you. I`ll keep my fingers crossed for the 29th, and hope a way forward can be found for you. Leflunomide did nothing for me either - we didn`t get on at all well.

Glad the Toffees finished above that lot from Anfield!

Take care,

Kathleen xx

Update...news at last!...please excuse my ramblings...just want to get off chest...

Hi, I'm still here in much the same position I'm afraid...BUT...had a phone call from my rheumy consultant and he thinks on balance that I can go back on a biologic so hopefully things will improve for me soon. I'm a bit apprehensive about it as there is still a considerable amount of uncertainty as to what the problem is and if/ how it might be affected by a biologic but I can't go on like this, with life completely on hold, any longer. So, mixed with apprehension is relief that something is actually happening and I might actually start to feel a bit better. I'm now just waiting for healthcare at home to get in touch re re-starting Enbrel.

Just hope I'm doing the right thing. The rheumy consultant felt that Tocilizumab might be a better option RA wise but I felt there was too much uncertainty with it (would I tolerate it, would it work, could it make the problem worse etc etc) and I've had enough uncertainty over the last year. Consultant agreed with me then that it probably best to go back on Enbrel for the time being. Obviously, there is a risk that the Enbrel won't work (it was losing its efficacy anyway) and more worryingly a risk that it could make the knee and leg problem worse again. The knee actually is less hot and red than it was but that could be because I'm practically on enforced 24hour bed rest whereas when I was less unwell I was trying to move about on it.

All the 'experts' still have no firm explanation of what the problem is but they are veering away from it being an infection as it has not got progressively worse over the last ten months that they have been monitoring it. They feel that any infection would have progressed during that time. Hmm, they were adamant it was infection for months, apparently the white cell scan and other tests used to diagnose infection are really 'a load of rubbish', and now although they can't rule out infection, they feel it is "unlikely". The possibility of it being a rare tumour has also thankfully, been dismissed. The suggestion now is that the fluid filled osteolytic lesions in my tibia and femur are a result of severe, aggressive RA, the like of which none of them have seen before although apparently the severe bone loss and pannus reminded one radiologist of RA damage they used to see years ago before there were any drugs to treat RA. My knee cap wasn't resurfaced when the knee was replaced and so the RA has apparently remained active around the knee after the replacement.

Now I had/have several questions/reservations about this explanation and have asked both my rheumy and ortho consultants but neither by their own admission can answer them. The ortho told me to stop trying to make sense of the situation as none of the experts can make sense of it, it is unique and very left of field. The rheumy conceded that my questions are logical but unfortunately they just don't have the answers. I am just perplexed as to why / how the RA could have caused so much damage during the time that I felt it was the best controlled its ever been (according to the ortho and previous mri scans etc, the bones were not in this state when the knee was replaced in sept 2007 and so the damage has occurred since and whilst I was on Enbrel feb 2008- sept 2011, my inflammatory markers were improved during the early days of Enbrel too) If it is the case that it's the RA gone bonkers then why hasn't the damage progressed even further during the last ten months whilst the RA has been virtually untreated and therefore very active? It doesn't make sense to me.
Could the problem/damage be related to the Enbrel, or to the material used in the replacement (my knee is ceramic whereas my other replacements are metal)? They don't know.
What if it is an infection that's very low grade, why would it have got progressively worse during the last ten months when it took 4 years to get to the stage it was at when they diagnosed it ( and during those 4 years I was on anti tnf which supposedly makes any infection a lot worse). Again, they are unable to answer. Can you see where I'm coming from?

So the plan now is to continue monitoring, as has been since last September, but with the re introduction of a biologic as rheumy now thinks that it's not the right thing to leave the RA uncontrollled any longer (I agree entirely ..but as I say I'm a bit apprehensive). Ortho wants another MRI in a couple of months to see if there is any change, he's "interested to see how the biologic might affect things".

I forgot to ask if a nurse from healthcare at home will have to come out to do the "first" injection like when you very first go on it or if they will just start delivering again. Has anyone else re started an anti tnf and knows what the procedure is? Also, I can't remember how long I waited for HaH to get in touch after they get the prescription request from the hospital. Anyway will keep you posted. Thanks for reading especially if you've got to the end of my ramblings!

Diane x

Hello Diane

It is good to hear from you and I have been wondering how you are very often. Not good though to hear how poorly you are and the 24hr bed rest definitely needs something to help, so I am glad they are moving forwards with treatment for you as it really seemed to have ground to a halt and you must hve felt quite abandoned.

I can really empathise with your apprehension about resuming the Enbrel though, the feeling of what will happen etc. However you are just going downhill in health and maybe this will help you feel better in yourself and hopefully a bit more mobile. Will they start you on the full dose 50mg or halve it 25mg? Sometimes they do this. It might be nice to have the support of the HaH nurse as well as your team.

As for the questions, what a minefield and disconcerting that the 'experts' are just as baffled. As Jackie says it is your body it is happening to and quite different from being an 'interesting case' however detached and objective we try to be. I really feel for you.

The low grade infection explanation is interesting. As you know I had my shoulder prosthesis removed in 2010 and 9 mnths of antibiotics. The fluid I had removed from the joint space in Sept 2010 looked clear of infection, though the surgeon in London did say that he felt it could still be there even though they couldnt find it in that test. My white blood count, temp etc had never been that abnormal all the time of the infection (sometimes due to steroids or RA)but when they took out the joint it was hugely infected and all the bones too.

I started Rituximab again in October 2011 and am due for another round in a couple of weeks as RA gone crazy again. However for the past month or so the area around my shoulder scar is very inflamed and the bones very painful to touch. Two weeks of strong Coamoxiclav have very slightly improved this but not much, so the GP has taken me off them for a few days and has booked me in for an urgent ultrasound.

I dont know if they will do the infusions but they have said to wait until I have the date, but not sure what then and who decides?! Also have my 3rd neck surgery booked for 1st Oct, so a bit complicated all round.

My rheumy says he does have one patient on antibiotics for life due to infection. I presume this is a fairly low dose. Have you been on antibios at all in this time? I guess it is reassuring that they are there should your knee get more painful after starting Enbrel.

What a puzzle it all is! Do you have a good GP to talk this over with? After all it is a whole body situation and so very wearing after all this time.

If you fancy a chat at any time, just let NRAS know and I can give you a call.

Take good care Diane,
Love Lizx

Thankyou Jackie, Liz and Jenny for your replies and support. I appreciate it.

Your experiences are very interesting (if that's the right word to use, seems insensitive to describe your suffering that way).
Can I just clarify how your infection was diagnosed Liz and Jenny? (think I've asked you more than once before Liz, sorry, but I just want to be sure I have it right..) Was bacteria found in the fluid that was taken from around the joint etc?
With me, although the white cell scan indicated infection, it was only when the MRI scan ( possible as knee is ceramic not metal) was reported as infection of the replacement and secondary osteomyelitis, that panic set in amongst the specialists. However, they have not been able to find any bacteria, despite 2 lots of fluid taken at different times and tissue and bone biopsies taken and tested too. However all the samples were abnormal ie, lots of white cells present, bone very soft etc....all apparently usually good indicators of infection. The subsequent MRI s have shown no change in the suspect area which, according to the experts, is not what would be expected of an infection. They feel any infection would progress and not just 'sit there'. But, your experiences seem to illustrate that this can in fact be the case.

It's particularly interesting that you have not been allowed Enbrel Jenny but have been allowed other biologics. I wonder what the thinking is behind that? I think perhaps I need to think about this some more and try and find some more information. It's hard to come by though as you know.

Liz, I assume I'm supposed to be going back on 50mg Enbrel. I have not had any antibiotics. I tend not to see my GP too much, just if I need to for unrelated issues, not for RA, in fact she did say she was staying out of the situation as it was all far too complicated!

The ortho still wants to operate to revise my knee, resurface the knee cap, swap one component of the replacement and try to put in a stem to make it all a bit more stable. I told him I can't face surgery until I feel stronger in myself. My ankle and elbow replacements also need revising. O for a simple and healthier life eh?

How are your revisions Jenny, did you get good results?
I hope you can have the RTX and it works well for you, without any further problems, you have been through more than enough over the last few years.

Jackie, fingers crossed that the Simponi continues to improve things for you and long may it last. I hope so, it must have been scary having allergic reactions to all the other drugs.

Liz, I might take you up on your offer of a call but it sounds like you have enough on your plate at the moment. The current situation with your shoulder is worrying, I hope you get the ultrasound and some answers asap and of course, I hope it is a good result. I'm sorry that the RA has gone haywire again. All this does make me wonder if they are treating us all in the right way, so many of us seem to have puzzling problems, meanwhile our RA continues to progress.

Take care ladies, thanks again for your support, you're wonderful.

Diane xx

Hi Diane,

Lovely to hear from you again, though you still seem to be in the position of having "more questions than answers." Not having any experience at all in what you have been going through, I can`t offer any advice/opinion about any of your problems. I just continue to hope things will improve for you in the very near future, so you can regain some much better quality of life. It`s all very well saying you are a most unusual case, but that`s not a great deal of help when you are the one suffering, and needing to make your mind up about re-starting enbrel.

I do think about you, and wonder how you are, though as I say, I`m no help in the advice stakes!

Hope the girls are well,

Take care,

Kathleen xx