Little update / info needed.

silverfoxxxx

Hi,

I’m now 11 weeks into my methotrexate regime and have seen no benefit as yet, also in the past 9 days I’ve had 380ml of fluid removed from my knees, the second lot being done in A&E due to the non response of my care team to several phone calls.

I was lucky and my rheumatologist came down to A&E, the on duty nurse knew him, chatting whilst he removed double figures of needles worth of green gunky stuff he said he was looking to get the orthopaedics team to remove my synovial lining in my knee to stop the swelling as the drugs are having no effect, has anyone else had this done?, what does it look like long term wise?, he also said I may be able to get an appointment in London to have a radioactive that will kill off the lining of orthopaedics waiting list is to long.


I’m sure I’ll get some info from rheumatology at some point but want to get ahead.

dreamdaisy

This takes me back, I had two open synovectomies on my left knee (2002 and 2003) and one closed on my right (2005). The first was so extreme the surgeon took photos which are now in surgical textbooks. I also had the radioactive stuff done which meant six weeks off work (I was a self-employed tutor and, although the radiation levels were safe for adults around me, it wasn't for the children). The arthritis continued regardless of these interventions, whether it's been different for anyone else I have no idea. DD

silverfoxxxx

Oh really as the idea they told was that without the synovial lining the knee can’t swell up as it’s the lining that produces the fluid, is this an incorrect assessment?

Getting closer to losing my job so need some sort of a fix that I can go to work with that actually has a chance of working, so far everything I tell them seems to fail so it’s not looking good, they have supported me but as they say they can’t forever.

dreamdaisy

I am not a doc but sheer common sense tells me that Inflammation happens in other places and in other ways. Auto-immune inflammation affects the whole body and can be measured in blood tests whereas OA inflammation is localised to the affected joints and cannot be measured because it is of a different kind. My knees were balloons last night thanks to my overdoing things to a huge degree: inflammation and extra pain dealt with by rest and Nurofen but everything else rumbles on because it does.

I've been told all kinds of stuff over the years by the professionals and learned to ignore the rotten carrots of hope dangled enticingly before my pain-clouded eyes: the final straw was when I began humira and my consultant told me I would be able to ditch the crutches and stop the pain relief as neither would be needed. What a joke. Those for whom the arthritis has not been severe as yet because they were diagnosed early and has responded to treatment will not be found on here because they think everyone's arthritis is just like theirs.

Removing the synovium does not alter the fact that your immune system is working against you. You could eat nothing but turmeric and still your immune system will work against you. You could eat and inject as many steroids as allowed to make you feel 'better' and still the immune system will work against you, you could have joints replaced and ditto because none of the above deals with the real issue. The meds are the only things that will control and reduce disease activity but even so your immune system might still attack because that is what it does.

I cannot help on the work front because I was self-employed, I began my little business eighteen months or so before the arthritis began and was able to work because I could tailor things to suit me. Employers understandably need certainties and guarantees about their employees and colleagues need reliability so they are not forever taking up the slack, all things denied by our disease. The real world has a lot of catching up to do when it comes to dealing with one of its oldest disease. DD

stickywicket

As I understand it – extremely incompletely – a synovectomy can buy us a bit of time but is not 'a solution' in the sense that a new joint is a solution for that particular joint. If work is a worry you'd also need to factor in recovery time. Rushing a surgical recovery can negate all the surgeon's efforts. I suggest you discuss this with your GP or rheumatologist.

silverfoxxxx

I think the issue they are having is I’m only 41 and whenever I have a scan for orthopaedics to review they never find anything wrong with my knees that need’s doing and obviously with the life expectancy of a new knee at about 10 years I’d need a few to last me just until I finish working age, again not something they like doing. My problem is if they don’t do something I won’t have a job or house for that matter if I can’t keep my job going.

dreamdaisy

Knees last a great deal longer than ten years if one looks after them but nowadays people don't see why they should have to adjust/reduce their lifestyles, either before or after the procedure. Should a replacement need replacing them more original leg bone has to be removed and one can eventually run out of the original material. It is unusual for a younger person to have a joint replacement but not unheard of, the trouble is a significant amount of joint damage has to be achieved to be considered and that can take years to happen if the only cause is arthritis. I was refused knees aged 52 despite being bone-on-bone through 2/3rds or so of the joints. Too young, overweight and not bad enough were the general conclusions. I went away and got on with things but I am used to doing that, it's been that way since I was a child. If this is your first major health challenge then it cannot be easy, especially as your perception is that things must be done; sometimes there is nothing to be done, not on the NHS anyway. If the NHS stopped treating things that are not illnessess, started charging people for wasting medical time, treat foreign nationals after payment is received etc. there would be more cash sloshing about but as everything now HAS to be medicalised, and treatment regarded as a right, it's tough. The systems is abused by far too many, far too often, as a result those in genuine need miss out. DD

stickywicket

You wouldn't be the first person whose scans have showed little but whose knee showed quite a lot during surgery. I do think it's best, if possible, to hang on to originals for as long as we can but, having said that, I had new knees at 35 having had RA since I was 15. That was in 1981. One of them was replaced about 10 years ago and the other is still with me though not exactly doing well.

It's true what DD says. For the revision (The op in which my 27yr old TKR was replaced) I needed bone grafts and I've never yet had them fit it all on an x-ray first go because it's so long. I'm pretty sure it couldn't be done again but I won't need it to be. It works very well indeed but I do treat it well with as much exercise as I can manage but nothing extreme.

I can understand your fears re work. Have a read of 'lozza's' thread on here re The Equalities Act'. Reasonable adjustments must be made. Equally though, if your house depends on it, it might be worth investigating for the future about easier work.

silverfoxxxx

Thanks I’ll have a look at that, but to be fair to work they have done and keep doing what they can, at the end of the day I work in retail as a manager so at some point I know this won’t be able to continue, but also I have worked with them for coming up to 25 years, and I know if I hang out as long as I can there will be a possibility for ill health retirement, even partial retirement if I am unable to carry out just my current duties. If I leave and get a lesser paid job I’ll lose that option and worried I’ll end up financially in a bad place unable to afford my mortgage, hard to know what’s best without the trusty crystal ball.

After 20 years with this, admittedly mild to start and a bit up and down but with the last 2/12 years being bad I have got really worried about the future and how I’ll financially provide for my 2 children, only 7 and 10.

Hopefully something will get done soon that will make things more bearable at least, and I guess over time I’ll get more accustomed to the future not being what I had hoped for.

stickywicket

We just never know what lies ahead. Neither do healthy people either but they are more confident, rightly or wrongly, about their futures. We can only take all reasonable steps as they arise, consult with the docs and then hope we've taken the right decisions.

As for children - they seem, nowadays, to expect more because they are constantly given more but I think kids are resilient and can cope with most things if they are just confident that they are loved. Having to learn a bit of financial independence a bit earlier than their friends will do no harm and maybe a lot of good.

silverfoxxxx

So after being on Methotrexate for 20+ weeks now and knee being aspirated as often as they’ll do it, which is not often enough for the now very painful swelling, I’ve hit a brick wall in treatment.

Awaiting my next appointment with rheumatologist, another 3 weeks and they can’t do anything at all in the meantime to help with the pain, just told me to go to my Dr’s, lol. And 7 weeks away from my first consultation with Orthopaedics, which was asked for over 6 months ago by another rheumatologist, and this is an expediated appointment, and clearly at this rate it will be 6 months after that for any operation they deem needed due to waiting times.

How do people live like this, currently now very close to losing my job and I just can’t get the help needed, all the specialist nurses I speak to over the phone confirm I’ve absolutely been sent round the houses with appointments and letters all stating to wait for this and that.

Who do you contact, what do you do to move things forward when everything else fails, I can’t lose my job over waiting for appointments but that is absolutely what is happening.

dreamdaisy

I've just reread this thread to remind me about you and your circumstances. I know mine were very different but as soon as my knee was over 22" in circumference I began to use a stick to take some of the strain. I avoided both sitting and standing for long periods (I still do) and, being used to the vagaries of the NHS (fabulous in a crisis, feeble with the mundane), just got on with things because this is how it has always been for me. If you are coming at this from a background of good health then life has failed to equip you with experiences to cope and you find yourself on this steep learning curve. What adaptions have you made to help yourself? Have you tried using a stick, or crutches? I'd be lost without my seated rollator, I'm off to an art exhibition later today and being able to combine sitting and walking means I can be there longer.

I am surprised that you have not been given anything in addition to the meth, it obviously hasn't brought things under control. My hospital is a teaching one and I think that makes a difference - if you were at mine I reckon you would now be assessed for your first anti-TNF (when I have a rare appointment they enjoy telling me how much better they are at getting patients on to the big guns, thus ramming it home even further that I missed out). I wish I had been born ten years later, my life would have been so different. Flog on, Daisy, it's what you know and what you're good at. Arthritis is a case of mind over matter: we mind but that doesn't matter. DD

dreamdaisy

Hello, how are you getting on? DD

silverfoxxxx

Thanks for asking,

Getting on with things as best as I can, only a week to go until my next rheumatology appointment, and my Orthopaedics appointment has been moved up to the following week as I’ve had my knee drained twice in the past 2 1/2 weeks, refills in about 3 to 4 days at the moment and for some reason they won’t do it sooner than 2 weeks apart.

I’ll ask them regarding the anti tnf treatment the rheumy that drained my knee over those weeks isn’t convinced Orthopaedics will do anything as on my last mri it doesn’t show excessive wear in my joints, which is odd as walking on them they both feel like they grind and something gets stuck when I try to bend them when the swelling has been removed, the pain when the swelling isn’t there is the same level but more pinpointed to under the front of my knee cap, I was hoping something showed up on the scan to fix in this area but apparently not.

As far as managing myself with this horrible disease, I walk and rest often, can’t sit for or walk for long as you say you need the best of both, I haven’t tried a stick or crutches but have thought about it, with being both knees crutches would be the way to go but working with them would be hard. I don’t help myself in the respect of it’s been 20+ years since I saw my first specialist so I’ve grown used to the pain whilst moving around, and I know I push my limitations but I don’t give in to much unless my body physically won’t, having to just get on with things to pay the bills and enjoy my life has probably not helped my long term outlook but as they say I may be run over by a bus later today, so I try to live my life the best I can and I don’t let my body tell me it can’t often.

silverfoxxxx

Hi,

Went in to see Orthopaedics today and have been put on the list for arthroscopy on both knees, this is to have a good clean up of the knee and remove some of the synovial lining and biopsy of any inflamed tissue / lining from the knee. Unfortunately, sort of, after having swollen knees for 2 years after my last knee aspiration 2 1/2 weeks ago they have not swollen back up, lol.

This is great so fingers crossed they stay as they are for a while, I need a break, but unfortunately they want to do the operation when the knees are swollen and inflamed to remove the tissue at its worst state so a thorough biopsy can be done. This obviously with an upto 9 month waiting list is going to be awkward as seems I need them to swell, then phone in and see when they can fit it in and not have anything done by rheumatology to reduce the swelling, not sure I could wait 9 months with 2 swollen knees but we’ll see how it goes from here.

Could this finally be the start of a full diagnosis and then treatment of my condition at last, rheumatology are currently at a loss on long term treatment other than aspiration as no medication stops the swelling for very long.

stickywicket

That's a bit of a curate's egg, isn't it? Good that they will do it but bad that you might have to wait for some time in a lot of pain though it makes sense that, if they see the knees at their worst, they can clear out more rubbish.

Will they do both at once? I know some people on here have had two TKRs at once but I don't recall two arthroscopies.

I wish you well in the interim, however long that may be.

silverfoxxxx

Hi,

Yes both at the same time is the plan, he did say in the grand scheme of things it doesn’t take that long to carry out the operation so should hopefully be able to fit me in with not to long a wait, but as ever what a consultant says and what actually happens seem vastly different, they don’t seem to have a grasp on their own wait times.

Fingers crossed my knees last as decent amount of time as I need the respite but also slightly wish they would swell up quickly to get the operation done and hopefully have some long term benefit.

dreamdaisy

I hope this works for you. DD

silverfoxxxx

Odd one, got home from work today, getting changed and noticed two lumps on my lower legs, outside edge of both legs but one higher than the other, squishy to touch and not painful, about the size of a 50p around.

silverfoxxxx

Well after about 6 weeks of non swelling here we go again, right knee only currently, which is the good knee and it’s gone into overdrive, solid with fluid within a week and 2 days after having it aspirated and steroids put in its full again :roll: , it was a good 6 weeks, lol.

Unfortunately the offer of getting my arthroscopy done quicker if the knees swell badly was not the case according to the secretary and booking team, approx 8 months to go then I guess.

stickywicket

You could try enlisting the help of your rheumatologist or GP. Occasionally they can speed things up. But don't hold your breath.