Hi Diane

Lovely to hear from you but sorry to hear of your problems.

I haven't had my ankles touched (thankfully) by surgeons. For now at least that part of me is intact!

I have had a wrist replacement (2003) and had to have a small revision when some osteophytes got trapped in the mechanism and locked it solid. The surgeon thought then he might end up having to do a further replacement or fusion but fortunately the bits came out, he fiddled with the implant and that fortunately seemed to do the trick! It is difficult trying to find out facts and figures but as you say all these replacements have a 'shelf life' and require revision as time goes on. I remember you saying how pleased you were with your ankle so it's a real shame you are in this position now.

I should think a fusion is going to really impact on your mobility and makes me wonder whether that is the way you would choose to go. However a replacement with bone graft is rather an undertaking and I imagine many many weeks of recovery. I think you might have to be guided by your surgeon on this one and trust that the decision is the right one for you. Not a place I would like to be so hope you are able to get more information before proceeding.

I don't know whether NRAS helpline may be able to help. I know Ailsa Bosworth has had ankle surgery, she had some difficult problems last year. Also, whether they could get some information from their medical advisor. Might be worth asking.

As regards Enbrel, you will probably be advised by your surgeon. Last year I was told for my knee arthroscopy (turned into a debridement and cartilages repair) to stop two weeks before and not restart until the six week follow up. Three weeks after surgery I had a huge flare and restarted of my own accord. I then found out from rheumatology I should have restarted no more than two weeks after surgery!! Left hand doesn't know what the right is doing! Mine was a relatively minor op., yours is a whole different ball game. Not sure where you go with that but definitely the advice of rheumatology would be needed because as sure as anything orthopaedics know little about RA or the drugs!

Good luck Diane, let us know how you get on!

Lyn x

Hi again,

thanks Lyn, good suggestions and advice as usual . I think I will give NRAS a call once I have the results of the isotope scan. Thanks Doreen for your well wishes too.
I will let you know how I get on.

Diane x

Hello, its me again looking for some reassurance. I should apologise as I only seem to come on here when I'm after something..

I got the results of the isotope scan yesterday and it's as I feared...the entire ankle replacement is loose and apparently the pain, stiffness, swelling, loss of movement will only continue to get worse . I have to decide when rather than whether to go for the revision surgery.

However to complicate matters slightly (I always have to be awkward), my 3 and a half year old replaced knee (on the other side to the replaced ankle) showed up a problem too. Now this replacement has always behaved slightly differently to my others in that it still swells, gets hot and gives some pain (nowhere near as bad as pre op). I have always been told that this was quite normal at my post op check ups and it would settle with time but after 3 years it was becoming obvious that this was not routine post op activity. In fact over the last few months the symptoms have got worse so I discussed this hotness, pain and swelling with my knee surgeon just a few weeks ago at an appointment. He felt that the problem related to the RA still being present in my knee cap...apparently he doesn't routinely replace the knee cap when he replaces all the other parts of the knee joint whereas some surgeons believe that the knee cap should be replaced in RA patients because of this potential problem. My surgeon said he has performed over a 1000 replacements (probably not all RA patients) and he said usually once he takes the main components of the joint away, the RA doesn't bother attacking the knee cap. I am the only person he has seen this happen in..told you I was awkward. He said 'oh you must have severe aggressive RA'...tell me something I don't know . He feels that once the RA has destroyed the knee cap, the symptoms will subside and the replacement will be fine (he can't do much else really as replacing the knee cap now isn't an option due to the significant risk of complications).

Anyway, sorry if I'm waffling, the ankle surgeon (well actually I only saw the registrar yesterday) now wants to rule out the possibilty of an infection in either the ankle replacment (very unlikely that it is an infection rather than the age of the replacement that is causing the loosening) or the knee replacement (maybe a possibility given my symptoms???). Obviously they would not be able to do any surgical procedure if there was any infection present anywhere. He has ordered a WHITE CELL SCAN which involves more radioactive substance being put into me. I've been thinking about this overnight and I'm not entirely comfortable with it..
a) because I had a radioactive substance injected just 11 days ago...anymore and I'll be glowing in the dark soon
b) because of the risk of infection with a canula..and having blood reinjected back into me...I know its only a slight risk but with being on Enbrel I wonder how much of an increased risk there is? and
c) according to information a white cell scan can show infection AND inflammation.......so how will they determine whether its inflammation from the RA or an infection in the knee
If I did have an infection, wouldn't it be getting worse or systemic (especially with the Enbrel) or can such an infection be very low grade and remain within the joint?

Yes I should have asked these questions yesterday but after waiting in a crowded clinic yet again for 2 and a half hours (when some poor soul had an epileptic fit and another mentally disabled patient was very distressed and screaming the place down), I didn't feel too good, wasn't thinking straight and to be honest I just wanted to get out of there!
Any thoughts anyone?

Thanks for reading this...just writing my thoughts (confusion ) down and sharing with people who can understand my concerns helps.

Diane x

Thanks ever so much Lyn.

I spoke to one of my rheumatology nurses today who suggested I speak again to both ortho consultants (ankle and knee) before proceeding with the white cell scan but as you well know this is much easier said than done.
I intended to ring NRAS today but to be honest I feel a bit guilty bothering them when I'm not exactly an 'active member'.
You may be interested to know that when chatting to the rheumy nurse re the relationship between Enbrel and the infection risk with certain procedures, she told me one surgeon recently told an RA patient undergoing a shoulder replacement to continue taking Enbrel and the patient suffered no complications.....

Have a good weekend.

Diane x

Hi Diane

I have a friend, a research scientist, who is working on aspects of cell mitochondria and since getting to know me has taken a particular interest in all matters RA.! Not always a good thing!

His thoughts on the radioisotope scan are that whilst it may sound alarming to have another scan done so soon the chemicals used are very safe and quickly leave the body through normal excretion processes within hours or a few days at most. The dose of radioactive chemical used is no more than a few normal X-Rays. The benefits generally outweigh any disadvantages as the site of any infection/inflammation can be easily pinpointed; this would not necessarily be picked up in a blood test which would only give a general non-specific suggestion of infection/inflammation in the body. I explained your predicament and he felt, in your difficult situation, it would be useful to go for the second radioisotope scan so the doctors can build up a full picture of the state of each joint and be assured of having all information available before proceeding to surgery. However, as you say, he did point out that radioisotope scans do not distinguish between changes caused by infection or those caused by inflammation so in that respect these scans are not a particularly good diagnostic tool. He continually used the words infection/inflammation as an interchangeable unit and I couldn’t help feeling he was missing the point; or perhaps it was me!

I, like Doreen, would have thought if you had any infection it would have shown up in a blood test, as an increased WBC count for a start! Even a low grade infection, you would imagine, whilst on Enbrel would have spread and made itself known. From my experience inflammation of a joint causes a lot of pain and swelling for whatever reason. But usually aspiration of some of the synovial fluid can easily be tested for infection. Presumably this could be taken from around the kneecap? As both ankle and knee joints are prostheses there won’t be any synovium as such but I do sometimes get hot swelling around my replacement wrist so I assume there is a fluid build up from somewhere.

Any invasive procedure will carry an increased risk of infection due to the Enbrel. I think you are wise to consider this. When I’ve had invasive procedures in the past I’ve been given a pre-operative course of antibiotics (two big capsules!) and not had problems.
The general advice on stopping Enbrel seems to be two weeks pre-op and two weeks post-op providing the wounds are healing well. That said these surgeons all have their own ideas on what is regarded as ‘safe’. I have heard some surgeons are now suggesting anti-tnf treatment should not be stopped at all but I wish they would come up with a common policy that we all know about and understand!

I have waffled on but not been any help really. I do agree that you need more information before setting off down the surgery route which is now, unfortunately, a fait accompli. Might it be possible to write to both consultants expressing your concerns? They might then agree to meet together and come up with a way forward.

Sorry I’m not helping much. Let us know how you get on.

Lyn x

Thanks Doreen, Lyn (wow you're a star) and Kathleen for your replies.

Yes they will look at my blood results too but as Lyn says a blood test will not show up where the infection (if any) is.
Lyn, having had many aspirations of different joints over the years (usually followed by a steroid injection), I wondered about this myself as I know the fluid is often checked for infection. However, I was told that they will not even consider putting a needle anywhere near a replaced joint due to the risk of introducing infection to the prosthesis.
Your friend has reassured me that there is minimal risk from the radiation aspect...something that Stephen has been telling me for days.
However, as you say the risk (however minimal) is only worth taking if the benefits outweigh it. If they cannot differentiate between infection and inflammation on the WBC scan, then I still wonder how the results of it will be of any more use than the results of the isotope bone scan they already have.
I'm at physio in the morning so I'll voice my concerns on the off chance they will get relayed to the orthos and it looks like I'll be writing some letters......

Thanks again Doreen, Lyn, Kathleen and Rose for all your responses...your thoughts are very much appreciated.

Take care
Diane x