Arthroscopic synovectomy

silverfoxxxx

Hi,

Finally going in tomorrow for my synovectomy of both knees in the hope this will have a good impact on my quality of life due to meds not helping with the inflammatory issues I have with my knees, even if it’s a short term fix until the correct meds are found.
Has anyone had this procedure done for both knees and can shed any light on the recovery, a little worried as I only have 3 weeks paid time off from work which I can push to 4 weeks using a holiday week. I have read varying reports on google for single knee ranging from 4 - 8 weeks, originally the surgeon said I’d be ok after 2 weeks to return to normal duties but this seems extremely optimistic from what I have read.

Concerned around mortgage payment and the rest of the household bills if I’m off for longer than 4 weeks.

Thanks.

stickywicket

I can well understand your concerns and you certainly don't need the stress of paying the bills but these are an unfortunate fact of life fr most of us.

I've had knees and hips replaced but not a synovectomy. However, one thing common to all operations is that it's viotal to give our bodies enough recovery time, otherwise pointless to have the op.

This is what NHS says about recovering from a synovectomy (note, that's one, not a double). https://www.nhs.uk/conditions/arthroscopy/recovery/
The driving section is important as, if you are not safe to drive, you will not be insured.

Is there any way you can find a Plan B just in case - buy yourself a bit more time.

Having said that I hope all goes very well and you make an excellent and quick recovery.

dreamdaisy

I've had three in total, two open on my left knee and one closed on the right. The left knee was extreme as it was to clear five years' worth of solidified inflammation so possibly a very different situation to yours. It wasn't successful as the inflammation returned within six months, leading to a repeat operation sixteen months after the first. This was back in 2002/2003. The right one was done in 2006 before it got too bad. On reflection it was never going to be successful as it was not addressing the underlying cause, finding the right combination of meds achieved that.

I was self-employed and had a total of nine unpaid months off work with the first two, a mere six weeks after the closed. Luckily the Spouse was employed and paid the major bills. I wasn't able to drive for months so suspended my car insurance payments for that time which reduced one of my monthly outgoings. Savings covered others such as my pre-payment certificate. DD

silverfoxxxx

Thanks, I’ll have a read of that link and look into car insurance, every saving will help, and yes part of the op is to get a biopsy so they can better suggest meds, currently nothing has touched it.

Although as far as my GP is concerned the reason I’m not on the correct meds is cost and nothing else as I only have three effected joints I don’t hit the correct criteria for biologics, even though my knees and jaw I find quite critical for actually being able to live.

dreamdaisy

My GP had nothing to do with my operations, mine were a double act between rheumatology and orthopaedics whilst they decided whose pigeon I was. To this day the GP does not have my rheumatology meds on my prescription because they don't prescribe them.

I apologise for not remembering your situation exactly but is your arthritis an auto-immune kind or OA? I have a creaky foot in both camps so am familiar with treatments for both. DD

silverfoxxxx

dreamdaisy wrote:

My GP had nothing to do with my operations, mine were a double act between rheumatology and orthopaedics whilst they decided whose pigeon I was. To this day the GP does not have my rheumatology meds on my prescription because they don't prescribe them.

I apologise for not remembering your situation exactly but is your arthritis an auto-immune kind or OA? I have a creaky foot in both camps so am familiar with treatments for both. DD

Auto-immune, although tbh they seem to come up with a different actual diagnosis each time I see them and the drugs haven’t worked as they should have, so far my GP has made better progress than the rheumatologist dept, at least I could eat without pain on the oral steroids he prescribed, rheumatology told me I had to wait 3 months for my next appointment before they would even do anything, I know it’s money constraints within the Nhs but the appointment schedule is woefully inadequate when meds need changing on a regular basis.

Fingers crossed after my recovery I’ll be able to walk with less pain than I’m currently in, as the past few months have been excruciating and effecting my whole body due to the way I try to naturally compensate for the lack of movement and pain.

stickywicket

If you're still on steroids please make absolutely sure your anaesthetist knows the dosage and how long you've been on them.

silverfoxxxx

stickywicket wrote:

If you're still on steroids please make absolutely sure your anaesthetist knows the dosage and how long you've been on them.

All good, GP weaned me off them ready for the op, hard work as a bit of a rush down to zero dosage still feeling rough from that.

dreamdaisy

I am confident that the meds I have taken have worked as they should which is a very different matter to them working as I would like. They have reduced disease activity which is their job but without reducing pain and they never will, not even the pain dullers do much on that score.

It's rare for people to post about how well they are doing with the meds which is a shame because it might help others but the natural assumption is that everyone else is experiencing the same as them. As if. DD

PS I took a year to come off steroids, it takes time for the body to relearn how to make its own rather feeble version and the last few reductions of the manufactured stuff are the hardest. Good luck, I hope things go well and please let us know how you get on.

dreamdaisy

I hope all went well today. DD

dreamdaisy

Hello, I hope thIngs are not too sore. DD

silverfoxxxx

Hi,

Thanks, things are sore but not to bad I guess, luckily used to sore knees over the past few years, a few sharp pains now and again to let me know I shouldn’t be moving around but other than that ok pain wise. The headaches I keep getting are more annoying but guess that’s being stuck in, never been good at that, or the sitting still, slightly unfortunate with my arthritis.

The only issue I currently have is the after care, or lack there of, been given a generic letter, no physio for two weeks, light walking only, whatever that is, and not allowed to drive, and a follow up appointment in 8 weeks, any redness or soreness see GP. I expected Physio to start a couple of days after the Op.

As far as the Op was concerned I’ve had no feedback on how it went and told I won’t get a letter so I’ll have to wait and see in 8 weeks time, be nice to know what they found in there.

dreamdaisy

Thank you for getting in touch, it is nice when people respond. Headaches can be caused by anaesthetic, dehydration, stress, all kinds of reasons. Keep sipping water, light walking is exactly that so no tramping the hills, not spending three hours in a shopping centre or going to salsa classes, it is moving from bed to sofa, to kitchen, back to sofa, back to bed. This is the time for reading, doing puzzles, asking friends round for a natter - being confined to barracks does not mean sitting in a chair vacantly staring into space but thereagain that's easy for me to say as I am often stuck indoors so used to it.

Despite it being a small operation thngs have been mucked about with and this is the time for the deeper healing to take place. Being a patient patient is something many find very difficult, often they are not then they blame the surgeon for a poor outcome. Twerps. I have never had any immediate follow-up to any procedure and there is often a lapse between the op and the onset of physio because things have to mend a bit before they are placed under pressure. I am sure will find out what happened at your first follow-up apointment and I hope any post-op inflammation dies down, never to be return! DD

dreamdaisy

Hello, how are things going? DD

silverfoxxxx

dreamdaisy wrote:

Hello, how are things going? DD

Thanks for asking,
Up until a few days ago didn’t seem that good, but the last couple of days I’ve seen a vast improvement in being able to get around, need to be careful I don’t over do it I guess now though. Still had nothing from the hospital with regards to the operation or any follow up physio. My GP is going to chase it up for me.

Had a rheumatologist appointment which wasn’t the best, he said the outcome of the biopsy didn’t give any further indication of what treatment to follow, showed a possible virus but he didn’t think it was anything to look into as I have it in multiple joints a virus wouldn’t cause it. He didn’t really have any plan to help fix anything going forward, said he felt I should go back on Methotrexate even though it didn’t help the last time, other option is leflunomide but he said I’d have to weigh up the side effects which he said may be an issue.
He spoke about Biological options and said he didn’t want to go down that route, when I asked why he basically spewed out a load of stuff about cost and getting passed by the relevant people, and not knowing which one to give me, to which I replied well I can hardly walk and it’s painful to open my mouth and eat so surely we need to start on something stronger, which apparently means nothing, left that appointment as any other, they don’t know what to give me, no idea what type of arthritis it is and left in limbo again, the fact I’m about to lose my job seems to not bother anyone I speak to.

[Deleted User]

Hi SilverFox,

The biopsy wasn’t as helpful as hoped, that’s a nuiscence, but you aren’t back to square one which is good. Going back on methotrexate isn’t a bad thing to do, it’s often one of the first to be prescribed. Many people are on mtx along with another drug and the combination makes both work well. Is there some reason not to take lefluonamide?

There are rules to moving to biologic medication, these include trying and failing on disease modifying anti rheumatic drugs (DMARD's).

If you have been unable to get around for more than 6 weeks you can claim PIP (Personal independence payment). You can work whilst claiming. It’s not the same as your wages but it’s useful all the same.

Here’s our leaflet

https://www.versusarthritis.org/media/1419/personal-independence-payment-factsheet.pdf

Here’s the link to other benefits you may be able to claim.

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/financial-support/

It’s always best to get help with claims from CAB or similar if you can.

You could always ring up and talk to your rheumatology nurse or your consultant‘s secretary to investigate starting mtx if that was what they suggested as it can take 12 weeks for it to build up sufficiently to start working.

I hope your improvement continues, I’m sure physio will be most helpful when you get there, won’t be long now.

Take care
Yvonne x

silverfoxxxx

Thanks,

I’ve previously been on sulfasalazine and methotrexate, on sulf it did make a bit of a difference but made me very sicky and upset my stomach which didn’t pass, on methotrexate I had to have my knees drained monthly the whole time I was on it, it didn’t touch it one bit, my concern I brought up with my rheumatologist was another 6 month trial on methotrexate is another 6 months of my life and inability to fully carry out my job, but this is the suggested route which I don’t fully understand the reasoning behind.
I’m not daft and understand the amazing cost differences between dmards and biologicals but as a patient that shouldn’t be my issue, I’ve paid NI since starting work at 16, never claimed for anything, never asked for help and when you do and it’s not forthcoming it is annoying.

silverfoxxxx

Another letter Another pointless delay, I have to wait 7 weeks for a phone call to talk me through the side effects of my next Dmards before I can get hold of them and start the next phase of guesswork towards a fix.

The second time I have had this delay and the nurse said last time it was not the way they would normally do it as they want patients to be on the medication as soon after the consultation as possible. I know the NHS is struggling but getting caught up in blatant lying all the time is not helpful, all I ever get is, we’ll start this ASAP or we’ll see you in a couple of weeks, knowing full well appointments are booked up 6 months in advance for the past 2 years.

If it’s not enough of an issue my quality of life is going down hill on a monthly basis the added stress of the service, or lack of, from the NHS is very quickly pushing me over the edge, all I seem to do is wait in pain, then when the letter arrives wait even longer. Think I may have to look into some emotional help as I get so angry with it all.

Sorry Rant Over.

[Deleted User]

Hi Silverfox

It sounds like you are going through a bit of a tough time. Don't apologise for having a rant. Sometimes it's good to get it of your chest.

Maybe go to your doctors and see if they can offer a counselling or some emotional support.
They might even be able to write to your rheumatologist as an urgent to get you an earlier appointment.

What are the next lot of DMARDS they are offering you?

silverfoxxxx

moderator wrote:

Hi Silverfox

It sounds like you are going through a bit of a tough time. Don't apologise for having a rant. Sometimes it's good to get it of your chest.

Maybe go to your doctors and see if they can offer a counselling or some emotional support.
They might even be able to write to your rheumatologist as an urgent to get you an earlier appointment.

What are the next lot of DMARDS they are offering you?

Leflunomide is the next drug of choice, although he was pretty adamant he wanted me back on Methotrexate even though it didn’t do anything the previous time, he said it will be up to me during the call after I have heard the side effects, is leflunomide side effects more prevalent? Or is leflunomide less effective generally?, he wouldn’t really comment massively on why it wasn’t his top choice or why Methotrexate was.

stickywicket

In terms of effectiveness they're similar as are side effects. Lef is more expensive. I was on it briefly but was taken off when I was having breathing problems with a chest infection. Personally, I don't blame the lef. I'd just had the flu jab while unwittingly harbouring a cold. Some people are on both.

If meth didn't work for you I wonder why your consultant is so keen. I'd want to ask what your bloods were like on it. If they were good then the drug was working well regardless of how you felt and the rest is about pain relief.

silverfoxxxx

stickywicket wrote:

In terms of effectiveness they're similar as are side effects. Lef is more expensive. I was on it briefly but was taken off when I was having breathing problems with a chest infection. Personally, I don't blame the lef. I'd just had the flu jab while unwittingly harbouring a cold. Some people are on both.

If meth didn't work for you I wonder why your consultant is so keen. I'd want to ask what your bloods were like on it. If they were good then the drug was working well regardless of how you felt and the rest is about pain relief.

Bloods where fine and always are whether I’m on drugs or not, but I have an inflammatory arthritis which stayed fully inflamed the whole time, even though inflammation markers are low. The only pain I get is when inflamed, when they are not which happened about 2 1/2 years ago now, absolutely no pain at all and trained and ran a 10k charity run. If I can get the inflammation under control I’d be in an amazing place. For some reason nothing fights the inflammation, steroids or Dmards.

To be honest in most of my rheumatologist meetings they come across as somewhat lost with a fix and just guess what to try and ask me to decide out of a list of drugs, I’d of hoped by this stage they’d have a better clue at what I need to take than me, lol. They also seem massively cost driven, my GP says this is the biggest problem he’s facing at the moment when referring patients across to the hospital.