Hello again!

It is indeed good to have the support of others who have gone/are going through these experiences, even though we are all different it helps not to feel you are the only 'complicated' patients out there! Though we wouldn't wish it on anyone at all and I would like to emphasise to anyone else reading this that these events are rare wit joint relacement as far as I know and that we have all had RA for a very long time.
I am sure that you are both like me on the BSR Biologics Research register at Manchester Uni where they are following the progress of patients for 5 years who are on biologics, so that they can monitor longer term side effects of the new drugs. I am glad that some learning can come from experiences, good and bad.

To answer your question Diane:

My infection first showed itself by a hard lump under my right arm, just outside the armpit. It was there for a year and nobody thought much of it until a short course of high dose steroids (50mg) for temporal arteritis brought up cellulitis around the lump. The cellulitis was treated with Coamoxiclav and resolved, though the lump remained, hard but fairly painless. It turned out to be an abscess which had hardened over time, but it was left as not causing trouble.
About a year later I had 2 infusions of Rituximab having come off Enbrel after 6 years as my rheumy thought it wasn't very effective any more.
After the second infusion the cellulitis returned with a v engeance and I had the lump drained in a minor op and was put on antibiotics. District nurses came to pack the wound each day and this should have cleared the infection in 2 to 3 weeks. 6 months later it was still pouring pus and my GP practice, rheumy and nurses were getting frustrated with the inaction of the surgeon who didnt seem to want to operate, but finally conceded that the shoulder prosthesis which had been there for 25 years was the source of the trouble. It was removed, found to be full of MSSA (staphloccocus aureus which responds to penicillin - flucloxacillin) and the surrounding bones had osteomyelitis. I was on IV antibiotics for 6 weeks, 4 weeks in hospital, then released home (bliss!) at my request and on once a day teicoplanin IV like Jenny.

The infection had always showed itself as MSSA in lab results apart from once or twice when it turned to MRSA b ecause of all the antibiotics.

An aspiration in Sept 2010 showed clear fluid in the joint space, where there was still some cement which had been packed with gentamicin.

Not sure what is happening now, it is red and painful but no pus oozing thank goodness.Just hope it dies down and I'm talking to it nicely! I should get the ultrasound just before the RTX infusions are due hopefully.

All the bacteriologist said was that these bugs are very good at hiding and that's why she likes working with them! Better than living with them I'm sure:-)

Take care both of you and do keep us posted on your progress. Diane and anyone else, as an NRAS volunteer you know I'm never too busy for a call.

Love Lizxx

Hi, Diane, reading Liz's experience and looking at mine, it does seem that these cunning little bugs, manifest themselves as lumps and bumps, and not really general swelling, I'm thinking that perhaps your knee is a case of lively RA, and this is a first, I really hope so.

Despite all these rotten experiences, luckily time makes one forget and we all get on with life and dare I say it, have happy and positive things happen.

I'm actually looking forward to hospital, for once, and getting in that beautiful hydrotherapy pool, except for swimsuit experience, that is.

Wishing you all a lovely summer, that fingers crossed, is on its way.

Jennyxx

Hi Diane,

Have you actually got a plan of campaign for your knee, forgive me , but bcause I am pretty new to NRAS, I may not be up to date, with your whole story. Have you had any samples taken around the knee joint? Also, what is the biologics register, I have never heard of it.

I do hope I haven't made you nervous of using Enbrel, because I was was just one of the unlucky ones, and nothing has ever been proven.

On the subject of bone infection, I have come across a lecture by Dr Ivor Byron at the Nuffield Bone Infection Unit, on Utube titled ' How do you mend a bone infection' and if you are interested, can be found by searching for the above title. I found it quite interesting especially parts 4 - 7.

Don't despair Diane, I have had both knees and hips revised several times, and am still getting about. Knowledge of best practise regarding surgical protocol, has become so advanced these days, that there is a much better prognosis for those of us needing complicated surgery.

One other thing I would like to mention, is today I got my consultant's letter referring to my last appointment, and he said , that during my stay i would be prepped for Rituxiimab! Which he considers a much safer treatment with ongoing bacterial infection!
On the Hydrotherapy, will only get into a pool if staying hospital, does more harm than good if I have to attend as an outpatient.
I suppose there are no certainties when it comes to long term RA, but I honestly don't regret my surgery ( infections and all ) as it has given me a quality of life, that without it, I know I would never have had.

Well, I think I have rambled enough, from a very wet Bracknell, I wish you a lovely weekend too, hoping the weather is better where you are.
Jennyxxx

Hi All,

It seems as though the sun is at last managing to win the battle, just my luck, that the weather improves when I go into Hospital next Monday. Actually, I am really looking forward to getting to the bottom of my extreme lower spine pain and this exhausting exhaustion, that has descended upon me in the last few months.
No internet in hospital, so I shall be disappearing for provisionally a week. Hope to be home for most of Olympics, as it the first and most definitely the last time this
London girl will see the olympics in the city of my birth, quite exciting really, especially tennis, gymnastics, athletics and my secret pleasure, synchronised swimming!

Jennyxxx

Good luck Liz - it sounds like things are finally improving for you - fingers crossed the RTX will have a rapd effect.

Sylvia xx

update

Hah nurse came out this morning and I have injected 50mg Enbrel.

I'm ashamed to say I had got myself into a bit of a state, I was very anxious and still unsure whether I was doing the right thing. The nurse totally understood when I explained my situation and all what's been going on and she was really nice. She must have been here for over an hour, discussing it with me and waited ages after I had injected to make sure I was ok. She even suggested that I speak to one of the pharmacists at Hah and let them know about my case as they have access to the drug manufacturers, to see if there is any documentation of anything like this having happened to anyone else. So I will ring later or tomorrow.

Still feel a bit anxious as now it's just a wait and see if the Enbrel causes the problem to deteriorate. MRI scan booked for September to monitor.

Hope everyone is reasonably ok. Hope your RTX infusion went smoothly Liz.

xxx

Thanks Doreen xx

Thanks Liz.

I totally agree with you that the more data they have from patients on these drugs the better. It does make you wonder why they had a cut off point for the cohort number. With the drugs being so relatively new, I would have thought it was wise to track as many people as possible for as long as possible. It's a bit concerning to find out that an awful lot of information is simply just not being collected. Research costs money, so I suppose cost is the issue unfortunately.

Glad you had your RTX and probably wise that you only had a half dose this time. Hope you feel a lot better very soon. I bet you have loved having the family there. How old are your granddaughters now? Hope your daughter and grandson are doing well too.

Yes hope Jenny's ok, thinking of her too.

Love Diane xx

Hi Lyn,

Gosh isn't it awful having to make these decisions when really you just want the whole thing to go away, even just for a short while! I can understand your anxiety over having something which no one really knows the full effects of. It is perfectly natural and rational to be concerned but as you rightly say, uncontrolled RA is no fun either, and detrimental long term. Just wish things weren't so blooming complicated by other health issues.

Tocilizumab is the other option I was given. My rheumy would have preferred I tried it over re starting the Enbrel as he feels it is better at controlling systemic disease. I opted for the Enbrel as under the circumstances I felt slightly more comfortable going with something I'd had before rather than something which there was even more uncertainty about. However, if Enbrel doesn't work, I will probably be joining you on the Tocilizumab journey. No doubt you have heard good reports about it, as I have, but as we know it is very early days with this drug.

Lyn, you are very brave in how you cope with what life has thrown at you, especially lately. I wish things would improve for you. Hope your assessment goes well and will pray that the Toci will bring you some much needed relief. Will be thinking of you.

I had a phone call from the hospital this morning over my bloods. Esr and crp still very high as might be expected and Hb dropped further so disease is obviously very active...yeah tell me something I don't know!

Catch up soon ( email scrapped and will start again!)
Diane xx
Ps hope the boys got the grades they expected and needed, Liv did very well xx

Hi Diane,

Sorry you still have no answers yet - we`ll be reading about you in " The Lancet" one of these days!!

Good luck with the tocilizumab - I do really hope and pray that this drug brings some benefits fro you. I`d be apprehensive too, starting a new drug, but in the end it`s usually Hobson`s Choice isn`t it?

I`m glad the experts are keeping a close eye on you.

Take care,

Kathleen xx

PS Hope girls are well.