Bakers cysts

[Monkey321]

Hi, does anyone have or have knowledge on bakers cysts behind knees? I haven't been diagnosed with them but my own googling of symptoms and images of them look exactly like my knees look like. Swollen lumps behind knees, sore to touch, stiff, limited movement. I'm getting bloods done tomorrow testing crp, ferritin, CBC so will see if any increases show up on those. I have a mixed diagnosis of Fibromyalgia and PMR. Thank you!

[SheffieldJane]

This has come up a number of times. You will see that relevant posts have popped up on your screen. Mine is on the right. Your description sounds spot on.

[Monkey321 in reply to SheffieldJane]

Hi, thanks, will have a look

[PMRpro Ambassador]

I know a few people with PMR who have had them - not sure if there is a direct link though. They are quite common in RA due to increased production of synovial fluid so I suppose if your knees are involved in your PMR that could be related.

[Monkey321 in reply to PMRpro]

Hi, thanks. My rheumatoid factor only 10 so dr ruled out RA. Still none the wiser, I reckon I have both fibromyalgia and pmr plus bursitis is still painful in hips, knees and arms.

[PMRpro Ambassador in reply to Monkey321]

RF can be zero and someone have RA. It's called sero-negative RA. There are other blood tests that are more reliable.

[Monkey321 in reply to PMRpro]

Last time I saw Dr he just prescribed melatonin, folate acid, amitriptyline, B12 and vit D. (None of which I've taken). That was over 3 mths ago. I noticed on my reminder that I was due for 3 monthly bloods so got them done this morning. Pointless going to him again as he'll just "tell me off" for not taking any medication which is fair enough as they may well help. My husband is always on at me to take pills but I'm extremely reluctant to as 1 thing just cancels out another in my mind. I'm at the point where chronic pain from whatever I've got is how it is, no improvement but no worse. Only added annoyance is the swollen kneecap area front, side and behind. I literally can't see my kneecaps. I have possibly put on weight but I can't see it being on my knee area and they're both sore, stiff and restrict movement.

[PMRpro Ambassador in reply to Monkey321]

What a bizzare selection. However - has he done bloods for B12 and vit D? Are they low? Low vit D can cause very similar symptoms to PMR? One thing doesn't really cancel out another but you do have to admit that if you felt ill enough to go to the GP - surely you were expecting medication of some sort> If you aren't going to take any, why go in the first place?

[Monkey321 in reply to PMRpro]

I tested negative for ankylosing spondylitis. Here in NZ Dr looks for RA factor over 14.

[Monkey321 in reply to PMRpro]

My crp levels today are 14. Last bloods 3 mths ago they were 7.7. Bloods 3 months prior to that were 5. Very weird as fibromyalgia not inflammatory.

[DorsetLady PMRGCAuk volunteer in reply to Monkey321]

Fibro may not be inflammatory but PMR is… and inflammation can very caused by many things including the Bakers cysts presumably ….

[Monkey321 in reply to DorsetLady]

Yes, that's very true. Given I'm 48 yrs old PMR has been "ruled out". The concerning thing for me is my crp levels increasing. I know my body and long for answers but so far still a mystery. Thanks for your reply.

[PMRpro Ambassador in reply to Monkey321]

Anyone who rules out PMR on the grounds 48 is too young needs a reality check. Never mind - on your 50th birthday they can change their minds ...

[Monkey321 in reply to PMRpro]

Yes, you're correct, I was expecting the Dr to give me some medication to take but I was also hoping to have a "diagnosis" first. Taking a concoction of meds on a "see how it goes" is in my mind slightly pointless. The Dr has been good in terms of scans, bloods etc but seems to me it's too easy to just say "it's fibromyalgia" when he can't find or know anything definite. I've had constant inflamation for 2 years now and fibromyalgia is not inflammation based. The Dr has tested my bloods for vit D and B12 and folate and all my levels are within normal range. He attended some seminars from a fibromyalgia expert who gives all his patients those aforementioned pills and supposedly he's had good results so my Dr thought it might help me. I admit I'm stubborn or silly to not take stuff but I've had bad experiences with side effects and being a homeschool mum and needing to care for an elderly neighbour, I can't be feeling dizzy, naeous, sleepy etc.

[PMRpro Ambassador in reply to Monkey321]

Very likely - but it has to be fibro rather than polymyalgia for them to work And fibro isn't inflammatory. And all he has to do to "convince" you otherwise is to give you a few weeks of pred and see what happens. That would do no harm, But I don't like the stab in the dark approach either.

[Monkey321 in reply to PMRpro]

Thanks, I was on prednisone for about 3 mths, both Dr and rheumatologist weaned me off after thinking it was fibromyalgia not polymyalgia. Can't say prednisone was a miracle fix in that I felt huge relief in that timeframe either. My bloods for iron came thru tonight, ferritin is okay but iron saturation on 18%. (3 mths ago was 33%).

[PMRpro Ambassador in reply to Monkey321]

What sort of dose? An accepted diagnostic factor for PMR is that there is a global improvement of at least 70% in symptoms within a relatively short timescale. Of course, you have to be on ENOUGH pred for that to happen and the 15mg dose that many claim as the starting dose is sometimes not enough to achieve a massive change in a few days: a paper was published where 75% of patients schieved symptom control on 12.5mg, but it took a month! Few doctors are happy to wait a month, never mind the patients.

However - that does suggest there is something else going on causing the symptoms and that fall in iron saturation is a bit concerning you would think. PMR isn't the disease - it is a name for a set of symptoms with an underlying disease and there are several.

[Monkey321 in reply to PMRpro]

Initially it was 30mg dropping by 5mg every 5 days. The pains were better at first on the 30mg forage but began to varying degrees as I decreased. The Dr put me back up to 30 mg for 2 weeks then I had to drop by 1mg every 2 weeks. I was on 19mg when rheumatologist told me to wean off as his diagnosis of fibromyalgia didn't warrant the prednisone. Having bursitis in both hips and shoulders is an added pain so the 2 cortisone shots he gave me in both shoulders instantly helped. That was in August 2023 and the severity of that shoulder pain hasn't returned.

[PMRpro Ambassador in reply to Monkey321]

You have been totally mismanageed by people who haven't a clue how PMR is to be managed. If the pred worked it showed it wasn't fibro. The return of the symptoms as you reduced the dose was a confirmation. PMR isn't an acute condition where you take a dose of pred and reduce it quickly like that. You should have been tapered to 20mg quickly possibly, 30mg is a bit high really, But then the taper process should be more like 2.5mg per MONTH to 15 and then be guided by the patient and symptoms. Some can cope with 15/12,5/10 at 4 week intervals but many struggle and then the taper should be in smaller steps. 10% of the current dose is always better. And from 10mg (if you get there OK) the taper should NEVER be more than 1mg per month and if necessary less. If symptoms reappear at any dose you stop tapering and return to the last dose at which you had no symptoms. It is a chronic disorder with no defined duration - it might be under 2 years, it might be 10 years or more. Our experience with thousands of patients over well over 10 years is that many patients are off pred in 4 to 5 years,

[Monkey321 in reply to PMRpro]

Very frustrating, heard from dr. He believes my increased crp is "negligible" and my low iron saturation is "insignificant" as the other iron parameters are within range. So no advice, back to soldiering on.

[PMRpro Ambassador in reply to Monkey321]

No chance of seeing someone else? I get so angry at this intransigence in the face of patients in a lot of pain who are fobbed off with "fibro" even though they have raised inflammatory markers and respond to pred even when used incorrectly.

[Monkey321 in reply to PMRpro]

I'm pretty annoyed about it. No chance of seeing anyone else, here, it's extremely hard to even join a Dr practice as they're full. When you do get enrolled you're assigned a Dr and that's it. They don't let you swap and will only book you in to see that Dr.

[PMRpro Ambassador in reply to Monkey321]

Are they so short of doctors? A lack of choice is appalling really. It can be difficult here but there is some choice.

[Monkey321 in reply to PMRpro]

I agree and it's quite a big practice so plenty of doctors. Some Dr practices aren't even taking on new patients. When we moved here 4 years ago I had to go yo 4 different clinics to find 1 who was enrolling new patients. You can book an after hours "virtual appt" which is about $85 and it could be with any Dr from anywhere in nz which is pretty pointless in my case. My Dr has been good initially and organised a raft of tests for RA, ankylosing spondylitis, coeliac disease, ultrasounds, x rays, prescribed medication (dome I've tried, others I haven't). My feeling is I'm in too hard basket and undefinable. Problem is I know my body and know something is wrong but am at a loss. Thanks for listening, just having a frustrated rant!

[PMRpro Ambassador in reply to Monkey321]

I suspect it might be worth trying a proper PMR approach, The way you were trialed on pred was never going to work for PMR but it also doesn't suggest to me that it ISN'T PMR. You had some improvement with pred but it was withdrawn too quickly to know if it was going to follow a PMR pattern. But you have to persuade someone to try you with a decent approach.

This is a far more reasonable way to go about things:

rcpe.ac.uk/sites/default/fi...

It isn't perfect either but is very typical of something that works.

[Monkey321 in reply to PMRpro]

Great info, thank you. Appreciate your advice

[Fifegran]

Hi, I was diagnosed with PMR in 2018 and some months later discovered a lump behind one knee. Doctor told me it was a Bakers Cyst but gave me no clue as to what caused it. It has never bothered me in any way, no pain, to be honest I forget it’s there most of the time. I do think it has gotten smaller through time. I have had arthritis in my knees for many years. I wouldn’t worry about it too much unless it causes you discomfort.

[Monkey321 in reply to Fifegran]

Hi, thank you. That's useful info. My knees are both swollen and sore.