Will this inflammation be munching away at my knee? - NRAS

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Will this inflammation be munching away at my knee?

Twitty999 profile image
18 Replies

I have now been taking Methotrexate tablets for 12 weeks, gradually working up to 25g. Thankfully no side effects except chronic tiredness!. The problem is it isnt doing anything to help my extremely swollen & very painful left knee which ive had all this time. On my last visit to my Rhuemy nurse I asked if I could have a short course of steroids to get rid of the swelling until Mtx starts to work but she refused saying " it would be taking a step backwards".....I am struggling to bend my knee & struggling to walk despite Naproxen & Painkillers....I see others are taking steroids as well as other meds. My question is, could this Inflammation be destroying my knee while im waiting?...I dont see my Rhuemy nurse for another 4 weeks!.

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Twitty999 profile image
Twitty999
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18 Replies
helixhelix profile image
helixhelix

Is your knee full of fluid? If so you could ask for it to be removed (aspirated). I had that done a few times early on and it worked a treat.

As for the RA munching your knee it's not necessarily doing that right now. There's no way to tell for sure as far as I know, but the ability of your RA to cause erosions can be very variable. For the first 2 - 3 years I had constantly swollen and inflamed joints that caused no permanent damage whatsoever. A couple of years ago, after being in remission for a while, I had a flare of about 2 weeks and as a result have an erosion in my toe.

Twitty999 profile image
Twitty999 in reply to helixhelix

Thank you Helix..that's very reassuring & helpful..I'll make a doctors appointment tomorrow 😊

Nettac profile image
Nettac

Oh dear I feel for you. I've had the same problem myself. Have been taking leflunomide for almost a year, but despite that my knee was in a right mess.

Like you, it has been swollen, full of fluid and absolute agony. I was using crutches just so I could get about. I'm still unable to straighten the knee when walking. It was impossible to bend it!

After months of misery, and no rheumatologist appointment until December I was finally given a steroid shot (IM) in October. This helped with overall stiffness, neck, hip and shoulder pain, but not right knee! I was beginning to think there was something wrong with the partial knee implant. However, another steroid shot four days ago has virtually sorted the agony. Still can't straighten knee, and in my case I suspect it has been damaged.

I would go to your GP and tell them you are in pain, and show your knee. Mine rang rheumatologist and I was then given shot by doc in surgery.

Sorry your in pain. Miserable.

Twitty999 profile image
Twitty999 in reply to Nettac

Wow..you've been through it mettac..my knee is opposite to yours in that I can't bend it..it's great to discuss how others deal with similar problems and I will definitely make a doctors appointment tomorrow. .thank you!

Twitty999 profile image
Twitty999 in reply to Nettac

Wow..you've been through it mettac..my knee is opposite to yours in that I can't bend it..it's great to discuss how others deal with similar problems and I will definitely make a doctors appointment tomorrow. .thank you!

Twitty999 profile image
Twitty999

Thank you Ajay. ..yes I think yr right..the Mtx is not enough I'm new to all this & think I'm starting to panic that my knee is getting ruined while waiting for appointments. .I will make a doctor app.tomorrow to chat about other options..best wishes!

Matilda_1922 profile image
Matilda_1922

My right elbow was painful and I couldn't Straigten it.

Had a few bolus injections was told it's a systemic and will help reduce pain in all my joints but not my right elbow so I had a steroid shot into elbow which sorted it out. Now have full movement.

Maybe ask to have a steroid shot into knee.

Twitty999 profile image
Twitty999 in reply to Matilda_1922

Thanx Manila. ..I will do that 😊

Twitty999 profile image
Twitty999 in reply to Twitty999

Sorry for the wrong name..it's the predictive text!!! X

dwsurquhart profile image
dwsurquhart

Get off the mtx. If it has not started working yet then good chance it won't at all.

Yes, the inflammation is eating your knee. My knees had full cartilage a little over a year ago when I had a debridement of the torn meniscus in both knees. Cartilage supposed to be around 3/8" thick behind knee cap mine now around a piece of paper. This is all due to inflammation.

The swelling itself may not dissolve your cartilage but inflammation will. What does your blood work say? CRP high? If so get on something better than a dmard. I tried all dmards and got sicker and sicker, tried humira with no success, then Anakinra (IL1 inhibitor) no success, got into Actemra (IL6 inhibitor Tocilizumab). Inflammation went away very quickly and swelling followed shortly after. I had huge Baker's cysts behind both knees that have gone away now. The doctors will not aspirate swollen joints very often as this can lead to more problems. They WILL NOT drain a bakers cyst. It is the equivalent to putting a needle I to a balloon. Cyst goes pop and forms again rather quickly.

Hope you get some relief soon. Cortisone injections may help a little but be warned that the cortisone can also dissolve cartilage. Steroids also have other huge side effects, cause adrenal gland issues, mood issues, appetite, and so on.

Cheers

Scott

Twitty999 profile image
Twitty999 in reply to dwsurquhart

Thanx for that...lots of information there...I havent heard of most of those meds but will definitely be asking my rhuemy nurse about them in 3 weeks time. My CRP is 25 (not sure if thats high?) Im just new to all this, so its all a bit confusing. I think I may have a Bakers cyst behind my knee & I'll take your advice not to drain it!!!. Im seeing Doctor tomorrow so may be having some steroids just to make walking easier for the 3 weeks till I see my rhuemy nurse

Cheers

Tricia

rosie1928 profile image
rosie1928

Hi. I can only relate my own experience that I have had trouble on and off with my knees but no real damage. I would persevere with the MTX. I have had afew cortisone injection s in my knee but the problem is that it clouds the pain when you should still be resting the knee. Icepacking is my favourite treatment. I have had RA for 24 years now and knee replacement has never been on the cards although they do limit how far I walk. I used to be a nurse and now I really understand how frustrating this disease is. I do hope you find something to help shorten the flareups.

Warm regards

Rosie

Twitty999 profile image
Twitty999 in reply to rosie1928

Thank you Rosie....yes I get a lot of temporary relief with the ice packs & im so glad you havent had to have knee replacements. it is a worry of mine...im just 10 months into this & find it a bit scary & confusing as its all a bit trial and error...but this site is very helpful & supportive.

Best wishes

Tricia

rosie1928 profile image
rosie1928 in reply to Twitty999

Hi Tricia,

You will find that you will improve and you will be happier when you learn to manage the disease and pace yourself. I find I have about a window of 1 and hours for shopping and I no longer allow myself to get angry when I cant get everything done. I have thrown my pride out of the window and use the most comfortable chair at church and lean on a trolley whenever I can at the shopping mall or get my son to wheel me around in a wheelchair that you can borrow at shopping malls when I am really tired.

I plan, plan, plan and so yes to invitations explaining that if I drop out forgive me but I don't know from day to day how I will be.

I have lost a few friends but I have found some awesome ones who really get it and understand the ups and downs.

I love this site because I can have a bit of a moan as I try not to talk too much to acquaintances about my limitations.

I get embarrassed when I limp ( having quite succeeded at dealing with my pride) and long to be normal ..... there is so much adjusting to do .

The tiredness is the biggest hurdle and my feet get sore hence the limping but it is just inflammation and my body saying "enough".

My rheumatologist nurse said to me when I first got RA was " tell everyone you have the 'flu because you will find that they just wont understand".

Most of us look so well and if this encourages you I read a lovely thought about RA sufferers and it was this, " People with autoimmune diseases often tend to be very pleasant positive people." I liked that I will own that for myself. So take heart. Onwards and upwards.

Warm regards

Rosie

Twitty999 profile image
Twitty999 in reply to rosie1928

Hi Rosie,

Im not very good at typing, but your lovely long reply was very up lifting and encouraging!

I am so new to this disease and you have described the whole situation exactly. It is proving to be a very confusing, painful & frustrating journey .but I will keep that lovely thought about RA sufferers to the front of my mind! and soldier onwards and upwards! And I thank God for this site & the encouragement & support we all get from lovely people like you.

Thank you & warm regards

Tricia

rosie1928 profile image
rosie1928 in reply to Twitty999

So glad it helped Tricia. Yes this site is so encouraging and i am learning all the time.

Onwards and upwards!

God bless you on your RA journey.

Rosie

oldtimer profile image
oldtimer

The steroid would not prevent the inflammation attacking the knee joint by much, but it would make an awful lot of difference to your quality of life while you are waiting for the methotrexate to work. But, of course, you have to balance the downsides of steroid use against that.

You could ask the rheumy nurse whether she thinks the disadvantages outweigh the advantages of the pain relief and increased mobility?

Twitty999 profile image
Twitty999 in reply to oldtimer

I will probably just take the steroids from my doctor till I can see my rheumatoid nurse in 3 weeks time (she couldnt bring my appointment forward) & think shes going to try me on hydroxy chloroquine as well as the methotrexate!!......its a real journey this is! Haha....best wishes, Tricia

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