Bakers cysts

[Gottarelax]

I understand that Baker's cysts can occur in RA and it seems my mum has developed them. They are causing her a lot of pain (perhaps pressing on a nerve?). I see that there are options of steroid injections and perhaps surgery. Does anyone have experience of the cysts and the treatments?

[Amnesiac3637]

Hi. I’ve had large Baker’s cysts behind my knees in the past and an injection of cortisone put paid to their antics!

[Gottarelax in reply to Amnesiac3637]

This is what I hoped to hear! She's got a call with the rheumatologist in a couple of days and if he doesn't suggest it, I'll recommend she does.

[Runrig01]

I’ve had a bakers cyst, which was successfully treated with a steroid injection.

[Gottarelax in reply to Runrig01]

Thank you, hopefully it will be the same for her. She's in a lot of pain as it's on top of knee replacement surgery.

[Runrig01 in reply to Gottarelax]

Depending how long ago her surgery was, she may not be able to have a steroid injection. In the Trust I worked for, it was a complete No No, injecting into or near a joint that had been replaced. This is due to the increased risk of infection. It can trigger an infection in the joint, which then can result in the metalwork needing to be removed. 🤗

[Gottarelax in reply to Runrig01]

I think it's been over 6 months now since the replacement. Hopefully that's long enough.

[MJSlide1958 in reply to Runrig01]

Hi, My daughter has had RA since age of 17 she is 32 now. Has been on Enbrel since 2010 and Methotrexate since lockdown added to Enbrel. But she has suffered ovarian dermoid cysts in both ovaries since 2015. She had her first op to remove both in 2015 and second op this May. They have already started to grow again. She is suffering with worry because she would like to have a baby one day. She still has both ovaries, but tissues are less. RA and ovarian problems. She has a long term partner and only wants to have a normal life! 😢

[Doraflora in reply to MJSlide1958]

Oh, bless her. So young to get RA.

I so hope she gets to see a good expert & her & her partner can go on to have a baby.

What a worry for you (but we always worry about our “children”, even though mine are 45 and 40🤣).

[MJSlide1958 in reply to Doraflora]

Thank you, it has been such a worry for 15 years now! I wish I could take it from her. All she wants to do is go to work, and have a normal life, like most youngsters!😢

[Runrig01 in reply to MJSlide1958]

I’m sorry to hear this, and so young to be going through so much. Sounds like she is in good hands. I’m also on Enbrel and methotrexate, to keep my symptoms manageable.

We never stop worrying about our children. My daughter is currently undergoing tests, as she has all the symptoms of ankylosing spondylitis, as I had. It’s important to try and stay positive. I’m sure the health professionals will be doing their utmost, to preserve her ovaries, and achieve her wish of having children. Stay strong and take care x🤗

[MJSlide1958 in reply to Runrig01]

Thank you. I am so sorry to hear your daughter has symptoms. I do hope its not! But such as life! It is not fun being a parent when all goes wrong. Lets pray for all of us.😢

[Hidden]

Hi,I had a Baker cyst which burst.

My whole leg swelled and felt solid with inflammation and this triggered my ra.

Never had so much pain .

[Gottarelax in reply to Hidden]

My mum's hasn't burst but she is in agony. She has a lot of medical issues going on and so is used to pain but for her this is off the scale. How was yours resolved?

[Hidden in reply to Gottarelax]

As I said it burst but this triggered an autoimmune response.It's still there but small now and apparently they can fill back up at any time.

Really feel sorry for your mum it's the worse pain I've ever had.

[wilbertjellyfish in reply to Hidden]

This happened to me. Well my leg swole up and was very sore and when they scanned it they decided I must have had a bakers cyst that burst. They kept asking had I not felt the pain etc but I'm in pain so much of the time with the arthritis I didn't realize.

[Doraflora in reply to Hidden]

My knee doesn’t go down whether I exercise or don’t exercise. It makes absolutely no difference: the swelling remains the same

[Hidden in reply to Doraflora]

Neither did my swelling go down in fact my leg was huge after it burst .Only steroids and dmards controlled it but I still have huge knees 4 years later

[Doraflora in reply to Hidden]

It’s so frustrating as I’ve always been fitness keen - ever since about the age of 20, and I’m 72 now. It’s just weird how this cropped up from nowhere. I still think I pulled something while doing a gentle exercise class.

hey ho. On the scale of things I can’t moan at all.

[rmros]

I've had one behind my left knee for about 4 years. Mine can be aggravated by exercise. Surgery is usually futile because they just come back. I think the key is treating the underlying cause.

Both osteoarthritis and inflammatory arthritis can cause them. I have both in that knee so I have no idea which is to blame.

I've had two steroid injections into the knee joint. The first relieved the pain and swelling for a couple of months before it crept back. The second did nothing.

In short, it's quite difficult to treat and avoiding whatever aggravates it seems key.

[nan1701 in reply to rmros]

Exactly the same as you...same knee too! First time he drained it and had cortisone injection. Six months later same scenario but this time pain persists sadly.

[dwsurquhart]

I begged my doctors to drain them, they refused as they would pop like a balloon. I have cortisone injections to try to get them to reduce in size, no luck. Had a menisectomy of both knees to try and get them to go away by smoothing out the meniscus, that did not work either. Prednisone did not work, adalimumab did not work.i squatted and they popped which felt good for a few days, then the returned. I started on tocilizumab and they disappeared within a couple weeks.

[nan1701 in reply to dwsurquhart]

This is an interesting post as I have had the cysts for a few years now. I will keep this in mind when I see my RA guy next time I go. Thanks.

[nan1701]

They seem to be a real problem for some people. Me included. Mine burst causing even more problems. My rheumatologist drained it and my knee too with an injection afterwards. First time it worked for 3 months before returning. Six months later, I have just had the same procedure but unfortunately it hasn't worked as well as before. Not sure what the answer is, but judging by some of the other comments on here, it seems difficult to treat permanently.

[Popinjay]

I have had steroid injections into my Knee caps for them before they are painful ( depending on the Dr experience) to have but they also add an anesthetic which gives immediate relief they steroid can take a few days to take effect but lasts for approximately 16 /20 weeks. But i never hesitate to have them it's 1 minute of pain in the injection site to weeks of relief well worth it. I am 65 and have had RA for 23 years in fact I was having bakers cysts before diagnosis of RA I have not had any since. I was lucky though that my GP was willing and very good at doing these injections.

When next at the RA clinic tell your Mum to ask for a direct SOS number and email for the RA specialist nurses so she can get help from them for the injections as and when she feels she needs them , she can have up to 3 a year. However steroids will lower her immune system even further.

Good luck

[Gottarelax in reply to Popinjay]

Thanks, she's already taking oral steroids as she has polymyalgia alongside RA in fact she's not been put on RA meds (it was only a recent RA diagnosis). She's clearly having a flare at the moment as her fingers are swollen. She wanted to avoid going on MTX as my sister had a nasty reaction (yes we all have RA) but I do very well on it. Anyhow, she has a call with her Rheumatologist tomorrow after calling the nursing team. He's my doc as well and I think he's pretty good. Hopefully she'll start taking the MTX (or other DMARD) and also get the injection.

[Doraflora]

oddly enough, I’m awaiting results of my MRI scan.

I was told I had a baker’s cyst and bursitis in my right knee (the sac either side of my knee is full of fluid and the said knee is almost twice as large as my other one now)

Hope your mum soon gets sorted, Gottarelax.

[Otto11]

I’m sorry your mum is having so much pain. I have Bakers Cysts behind both knees. Both are complex ( whatever that means) it showed up on scan. They swell after excersise then go down with rest. Generally just ache. So far so good. I havnt needed any intervention.

[Ferret18]

Hi, I have a Bakers cyst behind my left knee. I can totally empathise with your Mum. It’s a crippling pain and I struggled to walk far at all even with a walking aid. I used ice packs every 2 hours for half and hour and added paracetamol to my Meloxicam (although obviously with medication your mum needs to follow her Dr’s advice).

However, after just over 2 weeks it’s now feeling much better, although still sore.

I’m due to have a TKP in February, which will hopefully help with the other horrendous pain in my knee.

RA really is the disease that keeps on giving!

I hope your mum feels better soon.

[Pjf0265]

I have a bakers cyst behind my knee and have just had revision total knee replacement due to arthritis ! Had the bakers cyst before the op and unfortunately it hasn’t disappeared ! Very painful at night especially My consultant said that can’t do anything about it as too close to blood vessels etc

Hoping the physio can help me when I see her tomorrow

Hope your mum can be sorted

[SheilaT3271]

I had a ruptured bakers cyst on my right knee for 2 years and various attempt to cure it including aspiration and steroid injection with limited success. I then fractured my left hip and as a result of using my right leg much more the cyst became even more inflamed and extremely painful. I was referred to knee specialist and in fact talked to four top knee guys and only one recommended surgery and even then couldn’t confirm if it would help. So I resolved to go a different route. I’ve been having lymphatic drainage massages for the last 18 months and it’s reduced the swelling by about 4cms and reduced pain. That in combination with a switch in drug to Kevzara (a sarilimab mono clonal drug similar to Tocilizumab) has helped me enormously - even my rheumatologist is amazed and confirmed in my last annual check that I’m in remission zone. Hope this helps.

[Pjf0265 in reply to SheilaT3271]

Wow thank you , that s I’ll undo encouraging - seeing rheumatologist consultant on the 31st so will ask for advice

[Doraflora in reply to SheilaT3271]

Whoo, that’s good news, SheilaT3271!