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attention anyone whose had an infected joint replacement Options
hen
#1 Posted : Tuesday, November 15, 2011 9:30:56 PM Quote
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Hello,
I've not posted on here for ages and so I'm not sure if anyone still remembers me but am hoping for some support or positive words of encouragement from someone who may have experienced a similar situation to the one I'm in right now.

I'll try to be careful and limit what I put on here as some of the details are a bit grim (those of you who are unfortunate enough to have been in this postion will know what I mean) but basically I have an infection in my knee replacement (now 4 years post op) which has spread to osteomyelitis in my femur and tibia and I am posing a bit of a challenge to the orthopeadic surgeon. Obviously I need surgery to remove the affected replacement and bone but the orthopaedic surgeon does not want to proceed until he knows what type of infection it is (obviously the success rate of eliminating the infection is greatly improved if they know what specific antibiotics/treatment to use). The infection has been confirmed by a white cell scan and MRi scan (which I was able to have as the knee is ceramic not metal). However, I have had the knee aspirated twice in an attempt to establish what type the infection is but no bugs have grown in the synovial fluid. The ortho cannot understand this as he said from the extent of the infection, he would expect bugs to be present in numbers. My case has been discussed at length by the joint and bone infection committee and apparently they are all flummoxed. I am having a little op on 1st December to take bone and tissue samples to see if the bugs causing the infection grow from those cultures.
Things are very much complicated because I have been on Enbrel for almost 4 years (stopped now of course) which I and my rheumy team know will have impacted on the infection but which the ortho admits he knows very little about.
I have been reading some of the Enbrel literature and am wondering if the infection is actually fungal and not bacterial which would explain why no bacterial bugs grew in the synovial fluid cultures.
Anyway, has anyone else had a similar experience, ie difficulty in establishing infection type. If so how did you proceed, if a broad spectrum antiobiotic was used, was it successful in eradicating the infection?
Has anyone had an infection of the joint replacement which turned out to be fungal ( I know its rare) and was this treatable?
Has anyone been on Enbrel and had a joint replacement infection and had the infection eradicated and a successful revision?...really need to hear some positive experiences (well as positive as they can be under the circumstances!)

Thank you for taking the time to read this, sorry if I've waffled a bit.
Diane x
annamaria
#2 Posted : Wednesday, November 16, 2011 12:41:08 PM Quote
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Hi Diane,

Yes, I do remember you well (and your brilliant success with your degree!)
But oh I am so very sorry that this has happened with your knee, and such bad news to hear that the infection has spread into the bones. From experience I know how helpless you can feel when this situation is diagnosed and doctors are flummoxed and I really do feel for you. It must be so very painful too.

I wanted to reply as I have (hopefully) come through to the other side from a similar situation as it were (though we are all individual and unique). I would be only too glad to email you or speak to you on the phone as I'm an NRAS volunteer, if you would like to let NRAS HQ know.

I will try to be succinct and answer your questions here though.

I was on Enbrel for 6 years, following 1 year on Infliximab starting in 2003. I developed a lump under my arm in 2008 which I largely ignored for a year, though I did show the docs. It was assumed to be a kind of cyst.

In Sept/Oct 2009 I had 2 Rituximab infusions as Enbrel wasnt doing too much. Within days I developed extensive cellulitis around the lump and had it excised and drained on Xmas Eve 2009! It continued draining for 6 months, being dressed by district nurses every day, sometimes 4 times a day and worsening. The bug was identified as staphylococcus aureus, a bug which everyone has on their skins and which usually causes no problems in healthy people. I was prescribed oral flucoxacillin, very high dosage, which I took for the whole time from the op, apart from stopping for a bit due to bad side effects and MRSA.

Finally a shoulder surgeon decided to remove my replacement shoulder (dated 1985) and it was full of the bug, including surrounding bones and soft tissues in arm and shoulder. After the op I was on IV Flucoxacillin every 6 hours and stayed in hospital for a month. I was desperate to come home then, so the Microbiologist agreed to let me home on another antibiotic Teicoplanin IV, which the district nurses could infuse once a day.

Eventually in late 2010 I had a white cell scan, which was clear from infection. Biologic drugs and corticosteroids can mask infection symptoms and even blood counts and the docs were quite amazed to find so much infection when they operated. I haven't had another replacement put in, though Stanmore have said they could design me one. The other replacement (1987) has been removed too, but not because of infection. I have other major operations on the horizon and am just trying to keep going.

I think the drugs can confuse the infection picture quite a lot, but that isn't much consolation to the patient. I do hope that you arent in too much pain Diane, I would imagine your general health is not at all good with all this infection going on, it is very lowering and I lost nearly 2 stones.

I wish you so much luck for the op on 1st December Diane and really hope that they can identify the offending bug/s. I found the consultant microbiologist so informative when I was an in-patient, she absolutely loves bugs. Good job someone does!

Take good care and dont forget if you want a chat anytime, I'm here.
Love, Lizxx
dorat
#3 Posted : Wednesday, November 16, 2011 1:12:07 PM Quote
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Hi Diane,

So sorry to hear what you are going through, and what poor Liz has been through!
There was someone else on here who had an infected replacement hip joint. Her name was Carol, but I can't remember her user name. Someone else might remember it, if you knew her username you could look up her posts because I remember she wrote quite a lot about her ordeal.
She had the replacement hip removed because of infection but I believe a new replacement was put in once the infection had been eradicated.
She doesn't post on here now but may still be a member.
Hope you can get successful treatment for your infection soon.

Love Doreen xx
hen
#4 Posted : Wednesday, November 16, 2011 2:32:13 PM Quote
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Thankyou Liz and Doreen for your replies.
Liz, I remembered about you but I couldn't find your old posts. I was hoping you would have some information for me and Im so pleased you took the time to answer. It does help a lot knowing you are here to tell the tale. I would love to chat with you and will definitely take you up on your offer, as long as you don't mind reliving your experience...I bet you just want to try to forget it now, if that's possible and move on. I'll ring NRAs later or tomorrow.
I am not in too much pain at the mo, that's another puzzle to them but I've had 2 big depos in the last 2 months and as you say, they mask a lot. I Huh have lost weightt and have felt rough for most of this year but put it down to Enbrel losing its efficacy and since I've been off it, uncontrolled RA. Now I'm thinking its probably been due to this infection. Like you, I have other replaced joints which also complicates what procedure they can do as well. Anyone, I'm on my phone now although typing is easier, thank goodness for touch screens, its difficult to see how much or what I've wriitten .
Look forward to chatting soon hopefully Liz, as I say only if you're sure you dont mind.

Dianexx

Ps Doreen, yes i remember Carol tabbycat. I think her hip got infected during her initial op and was discovered quite quickly...could be wrong though. Thanks again Doreen for your support xx
hen
#5 Posted : Wednesday, November 16, 2011 2:37:13 PM Quote
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Don't know how that face got there...maybe I'm not as accurate on my phone as i thought...although at least the expression seems to look appropriate! Sorry for typing errors
X
Kathleen_C
#6 Posted : Wednesday, November 16, 2011 2:56:35 PM Quote
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Hi Diane,

I`m sorry I can be of absolutely no help to you re your queries, but just wanted to say I`m so sorry you are having all these problems, and really hope someone can find a way forward for you.

Take care,

Kathleen x

PS Hope girls are well.

sheila_G
#7 Posted : Wednesday, November 16, 2011 3:13:58 PM Quote
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Hi Diane

I haven't had anything like you describe but just want to wish you well and I will pray for your speedy recovery. I had osteomylitis when I was 11 years old (49 years ago) and was a very sick child but after becoming immune to penicillin after several weeks, I was put on streptomycine (a TB drug) which was a very new drug then and that was the start of my recovery. Today, obviously drugs and techniques are far more sophisticated and improved so I am sure your infection will be cleared in no time.

Love and best wishes

Sheila x
Rose-B
#8 Posted : Wednesday, November 16, 2011 10:12:36 PM Quote
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Hello there,

Sorry to hear of your problems, I am afraid I cannot input any advice, but this is to send
you my very best wishes.

Take care and keep posting

Rose
hen
#9 Posted : Thursday, November 17, 2011 10:53:01 AM Quote
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Thankyou Kathleen, Sheila and Rose for your thoughts. It is much appreciated.

Kathleen, the girls are both fine, thanks for asking. Sophie was 21 in August and spent her birthday in China, she spent the whole summer travelling through China, Thailand and Laos. She came home for a flying visit of 2 days before going back to uni up in Newcastle. She has got a job at Gleneagles for the Christmas and New Year period so we will only see her briefly then too. I'm hoping to be well enough to go up to Scotland for a few days over that period but we'll see. She will be home for a week in early January in any case. We really miss her but am delighted she is living life to the full and loving it! Olivia was 17 a few weeks ago and is now in 6th form. She is enjoying it and is happy with and doing well so far in the subjects she chose for A level (Maths, Physics, Chemistry and Spanish). She hasn't got a clue what she wants to do at uni or whether to even go. It is so expensive now. She seems to be at a party every weekend, you know what they're like at that age, love going out and socialising. How are your lovely grandsons? They must be growing up fast now. I hope you are still managing to spend lots of time with them. Hope you and all the family are well. Will you be spending Christmas all together?

Doreen, if your following this post, I found some of Carol's posts but I think the ones relating to her infected hip must be on the old forum and I've forgotten how to get on there!

Diane x
annamaria
#10 Posted : Thursday, November 17, 2011 11:20:28 AM Quote
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Hi Diane

Just a quickie to say I've heard from NRAS and will try giving you a ring early tomorrow afternoon if that's OK. Dont worry if not convenient, I can try again.

Do hope you aren't feeling too bad today. Funnily enough, my infected joint wasn't too painful either which confused the docs tooConfused.

Your girls sound lovely, don't they grow up fast! Do hope you will be able to get to Scotland, it should be wonderfully atmospheric.

Take care,
love Lizx
dorat
#11 Posted : Thursday, November 17, 2011 11:35:49 AM Quote
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Diane, if you scroll down to the bottom right where it says "forum jump" You'll find "link to the old forum" on the drop down box.
You need to login with your user name and password.

Doreen xx


Kathleen_C
#12 Posted : Thursday, November 17, 2011 2:46:46 PM Quote
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Hi Diane,

Lovely to hear the news about your girls - Sophie is certainly living life to the full, and good for her!! She must have had lots to tell you after her travelling. I do hope you manage to get up to Scotland - might be a bit snowy!! Olivia must be doing well too.

Yes, our grandsons are growing up fast, both at school now : Jacob will be 7 in January, and Ethan 5 in Feb. We`ll be spending at least part of Christmas with them all, so looking forward to that - hectic but lovely!They like coming here for sleepovers.

I do hope you can get some answers soon, and feel some improvement. I know Liz had a really bad time, so I`m sure she`ll have some helpful suggestions over the phone.

Take care,

Kathleen x

hen
#13 Posted : Thursday, November 17, 2011 7:21:50 PM Quote
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Liz, thanks ever so much, will be lovely to chat to you, just a pity its not under different circumstances. I may be out tomorrow afternoon (she says hopefully) but if you don't catch me then, any time thats convenient for you is fine by me. My answerphone will be on so if you prefer me to ring you back just leave a message saying what time might be best.

Doreen, thanks for that. I've had a look but haven't found the specific posts yet. I'll keep looking, going to have another try now, especially since I've just seen that the old forum wont be available for much longer. That's a shame, there's so much information on there which could prove useful to people, but understandable if cost is the issue I suppose.

Kathleen, wow 7 and 5, I imagine that are at that very inquisitive stage where they want to know about everything but I bet they are still full of fun! I'm sure you enjoy the sleepovers as much as they do.

Diane x
Rebecca D
#14 Posted : Thursday, November 17, 2011 7:52:30 PM Quote
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Hi Diane

What a nightmare you are going through, I really feel for you.

I have been on Enbrel 6 years and had an infection in my knee in 2009. All the wound opened up and I won't even begin to describe the amount of gunge that came out of it.

I was put on mega doses of flucoxacillin for three weeks which did nothing. They changed the antibiotic which had no effect either. I was getting so stressed and worried what would happen. Eventually the microbiologist matched up an antibiotic to the infection, I had to wait for it to grow in the lab. The antibiotic was called Fucidin and worked really well, saved me from having the replacement taken out. I never got to the bottom what the infection was, but it's so important they establish what the infection is.

I really wish you every bit of luck for Dec 1st.

Love
Rebecca

hen
#15 Posted : Thursday, November 17, 2011 9:27:35 PM Quote
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Thanks Rebecca,

I take it they caught your infection before it spread to the replacement then? How long after your op did the infection manifest?
I have been told that my replacement and the affected bone have definitely got to be removed...it's a shame really as despite the knee having been warm and swollen more or less since day 1, I have really good range of movement.

take care
Diane x
Rebecca D
#16 Posted : Friday, November 18, 2011 4:55:58 PM Quote
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Hi Diane

I am so sorry Diane your knee replacement will need to be removed, I was very lucky they finally got the right antibiotic to treat my knee infection, otherwise the replacement would have had to come out.

It's bad enough going through knee surgery once without having all these infection problems afterwards. My infection started a couple of months after the op. I had the right knee operated first with no problems whatsoever but right from day 1 my left knee replacement was never right and I am still having problems with it 2 years on.

I do wish you and your knee some better news soon.

Take care
Rebecca
hen
#17 Posted : Friday, November 18, 2011 7:32:05 PM Quote
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Thanks again Rebecca. As you say, you were very lucky the infection was caught in time, although very unlucky to get it in the first place! Hope your knee problems settle, but if they don't, do keep telling your consultant. I was talking to a guy in clinic a few months ago who felt he had had problems with his knee replacement since day 1 but the ortho team kept telling him everything looked fine. Eventually they took him back to theatre where he had a manipulation and the knee has been much better ever since.

Liz, once again, thank you so much for your time today. Our chat made me feel a little less scared and I am so grateful to you for your support, especially as you have more than enough of your own problems, although I have never known you to complain, ever. I hope I didn't wear you out too much. I did mean to ask you about the flu jab, whether you had it while you had your infection? I'm getting conflicting advice and so I'm a bit uncertain whether I should. My GP is keen for me to have it especially since I am going to be spending a lot of time in hospital. I'll give it some thought. I finally got the letter completed by 4 o'clock (I kept redrafting it), took it round to the hospital reception and at 5 o'clock the consultant's secretary rang me to say it was on his desk ready for him on Monday morning! I do feel better for writing down my thoughts and concerns and am going to try and put everything to the back of my mind now until next week.

Take care lovely ladies, have a good weekend

Diane xx
annamaria
#18 Posted : Saturday, November 19, 2011 5:20:26 PM Quote
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Hi Diane,

It was a pleasure to talk to you, though I'm very sorry about the circumstances and reason for the call.
I can identify so closely with all you are going through.

Very well done for getting the letter done! You must have been shattered by the time you got home from the hospital.

To answer your question about the flu jab, yes I did have it in 2009 between the Rituximab infusions and the first op, so really before the infection kicked off in earnest, although it was obviously there. Nobody made any links or mention of it though and it was generally considered a good thing, especially as you say with hospital admissions. Their only concern ever seems to be any allergy to eggs! Last year I had just been cleared of infection by the autumn and I was fine.

Actually this year I have a really swollen arm 10 days after the jab, but seem to have developed a bad bruising problem everywhere anyway. Drugs and getting old I suppose!

Hope your weekend goes OK and that you get a speedy response to your letter and hopefully another chance to discuss things with the surgeon. Hope your rheumy team are helpful too about the RA management. Maybe a good idea to ask them about the flu jab too?

As I said on the phone, I am very happy to speak again with you at any time and have told NRAS this too.

Take good care Diane,
Lizxx

jenni_b
#19 Posted : Saturday, November 19, 2011 9:07:59 PM Quote
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Hi

I'm so so sorry that you have been through such a dreadful time.

The bugs thing is annoying me Diane, because that orthopod should jolly well SPEAK to rheumatology shouldnt they and LEARN about the drug. I know steroids and such like mask counts and do funny things with infection. It sounds like you should be asking for an Multi-disciplinary team meeting.

I am trying for one of these - organised by the chronic pain team snr nurse (my new ally! as she seems to have a lot of clout)

I have had serious infection(s)- like Liz, lump under the arm and it caused scepticemia and things were grim. Like liz I had to have the nurse out to pack the wound several times a day.

That was on the Enbrel
after that I did actually go back onto enbrel and took it ok for almost 3 yrs when in the end it stopped working and i got serious kidney issues.

Can they refer you for a second opinion to one of the big teaching hospitals like st thomas and guys and dr gabriel or I know Jean's surgeons are very well respected?

I'm not on any treatment at all for the RA and with severe RA thats no joke really- the disease is so aggressive that they have decided they cant do the replacements I need currently...

I have had a week of steroid pulses in hospital to try and hold things at bay.

Are you on steroids or anything to keep the RA in check?

They are trying to get me on this new JAK drug, in the meantime going to go on cyclophosphomide

My guess is they are really trying to nobble that infection once and for all before they try and tackle the horrid RA.

Are you managing anything like a normal life- is the pain horrendous?

Much love

Jenni xx
how to be a velvet bulldoser
jeanb
#20 Posted : Sunday, November 20, 2011 12:56:14 PM Quote
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Just a thought, Diane, but have you considered a second opinion with Bodo Purbach at Wrightington? He is very often called in to other hospitals (including those local to us) to operate on people who have so many problems with infected joints etc that the local surgeons haven't got the expertise to carry out. You may have already met him in your past visits to Wrightington. He is one of the few who NEVER gave up on Gwenda, no matter what, and she loved him too.

Lots of love
Jeanxxxxxx
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