Unusual symptom in PMR?

[Lutra2]

Short history - diagnosed with GCA January 2021. Tapered pred to zero by November 2022. Then began to get various joint and muscle muscle pains typical of PMR which was diagnosed as such in March 2023. So I'm back on pred and tapering again.

In retrospect, the first symptom to appear was a slight pain in the outer hamstring tendon of my left knee. Then one in the inner hamstring of that knee. Then some slight muscle aches. Then similar pains in the right knee hamstrings. This over 6 to 8 weeks, I think. Knee issues continued with increasing fluid retention at the back of the knees making bending them fully very painful indeed. Going back onto Pred cleared up all the symptoms very rapidly. But if I taper too quickly, the ache in the left knee tendon is the first hint that I have done so.

Has anyone else had similar knee symptoms? The GP hadn't heard of this as occurring in PMR.

Best wishes

[winfong]

I've got knee symptoms. In fact, it's almost always hip girdle, knees & upper back / shoulders. That said, in addition to PMR, I've also got extra-cranial GCA / LVV.

[PMRpro Ambassador]

Hamstring involvement is not unusual I believe. I had knee pain when the PMR first started. I had very sore hands and was referred to a rheumatologist for that in case it was RA, She poked at my hands and bent my knees and announced that it was OA, she could "feel it". When I eventually was put on pred some years later the hand and knee pain went quite quickly, An x-ray about 13 years after her pronouncement found no sign of OA at all.

There is quite a high involvement of knees in PMR - it is the subject of a paper from an excellent Italian PMR group

pubmed.ncbi.nlm.nih.gov/238...

"Peripheral arthritis has been described in up to 50% of PMR patients, with knee involvement in the majority. This study was designed to evaluate by PET/CT the knees of patients with PMR and GCA and to identify the knee structures involved by inflammation."

They actually found knee inflammation shown by PET-CT in 84% of their subjects - not a massive study but fairly representative I suspect.

[SpaghettiWestern99 in reply to PMRpro]

Well that’s interesting. As a runner I’ve recently had knee issues prior to PMR diagnosis and I’m now thinking that the cause could have been the on-set of PMR (and the ignoring of the pain and trying to run on it!)

[PMRpro Ambassador in reply to SpaghettiWestern99]

Could well be the case.

[Lutra2 in reply to PMRpro]

Thanks for the link - but it only takes me to the Abstract, and I can't find a link there to take me to the full paper. Is it in the public domain?

[PMRpro Ambassador in reply to Lutra2]

watermark.silverchair.com/k...

If you look at the top right corner there is Full text links. Oxford Academic, Click on that and it takes you to a page with title and on the left just under it is PDF which takes you to the link above.

[Lutra2 in reply to PMRpro]

Many thanks. I've found it and read it. Seems to concentrate on the deeper structures of the knee, rather than the tendons - but does suggest that PMR does affect knees to a greater or lesser extent.

[PMRpro Ambassador in reply to Lutra2]

It is the attachments of the tendons and ligaments to other structures that are typical of PMR. I think Clair Owen includes knees - on p2

semanticscholar.org/paper/M...

[Lutra2 in reply to PMRpro]

Thank you again. They seem to define the discomfort I experience.

[marionofnorwich]

Definitely knee problems as well as lower back, neck and shoulders

[Sukydee]

I have had very similar knee problems to you with what I call tendon pain and swelling, particularly in my left knee, since my PMR symptoms began. Once I started Prednisolone it eased considerably but has never gone completely. I haven’t been able to kneel down and sit back on my heels at all - something I used to do without giving it a thought! That tight bend is excruciating! My physio said she thought the swelling at the back of the knee was bursitis, which I hear is often associated with PMR. I had an X-ray of the left knee and no arthritis was found. I am now on a slow taper from 4mg to 3mg and my knee is as good as it has ever been throughout this whole ordeal. Wishing you all the best with your continuing journey.

[Broseley]

Ditto everyone else! My knees were the worst hit, and you describe perfectly how it affects the back of the knees. I also get pain at the side where the knees meet, which makes lying in bed on my side uncomfortable. The worst bit was crouching to use the washing machine, fridge or freezer. Extremely painful and I had to lower myself down in stages, pausing for breath and hanging on to the counter. Kneeling was impossible and so was bending as my back was affected too. Pred made me feel like 20 again (40mg due to GCA by the time a GP actually listened to me and stopped calling it OA). Luckily my arms and shoulders weren't affected so I was able to pull myself up from a crouch.

Now I'm down to 2mg, due to drop to 1.5mg later this week but my knees are starting to hurt again. Nowhere near as bad as before, but I'm wondering if I should delay my taper. The first time around it built up very slowly, so I really didn't notice it getting worse and worse until I realised I was pretty disabled. My rheumy just wants me off pred, and doesn't want to see me for 6 months. No blood tests, nothing.

[PMRpro Ambassador in reply to Broseley]

You need a new (or no) rheumy. Anyone who complains about a patient being at 2mg needs a realiaty check.

And I would delay the taper - until you are sure that the 2mg is still enough.

[Broseley in reply to PMRpro]

Thanks, I've tried paracetamol, but no effect. I might ring the rheumy helpline.

[PMRpro Ambassador in reply to Broseley]

Is that any use with that rheumy????

Paracetamol does zilch for me for most things. Try a one-off 800mg flooding dose of ibuprofen and see what that achieves. It it is PMR it probably won't do a lot but it should help other things and that provides some evidence.

[Broseley in reply to PMRpro]

Thanks but I'm not allowed to use NSAIDs due to being on blood thinners, not even the gel!

[Sharitone in reply to Broseley]

How about co-codamol? (If you can tolerate the constipation)

[Broseley in reply to Sharitone]

As I am under investigation for repeated diarrhoea, it might help! But seriously, I don't want to complicate things. I haven't seen a gastroenterologist yet, but I've been referred.

[PMRpro Ambassador in reply to Broseley]

So am I - but for this you need to know if it is inflammation causing the pain. It is for me - and without ibuprofen I am often in so much pain I cannot move. Some use of NSAIDs is OK, not constant perhaps. In fact, it wasn't the anticoagulant that was the concern for the Pain Clinic doctor but the long term adverse effects on the kidneys.

[Broseley in reply to PMRpro]

If it's inflammation, how do you know its not PMR and you should up your pred dose?

[PMRpro Ambassador in reply to Broseley]

NSAIDs do absolutely nothing for PMR for most people so it is a good quick way to sort the sheep from the goats.

[Broseley in reply to PMRpro]

Ah, OK. Though the stiffness goes by mid afternoon anyway. I'll try one tomorrow morning, see if it goes sooner.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

I also get pain at the side where the knees meet, which makes lying in bed on my side uncomfortable

Have you tried placing a spare pillow between knees to give a bit of support/padding?

[Broseley in reply to DorsetLady]

Yes, I bought a toddler pillow which is just right. I haven't needed it since starting pred, but I'll have to dig it out again!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Always worth a try - I use one all the time... for back mainly nowadays, but in the past for knee and hip pre replacement surgery.

[PMRnewbie2017]

I thought I had a torn medial cartilage. The MRI showed Pes anserine bursitis. Something I had never heard of so feel free to Google it. This definitely gets worse as I taper downwards and was really troublesome when I reached 1mg. Now back at 3.5mg but that's another story. Thanks to the Italian paper mentioned above, many things now makes more sense to me.

[PMRpro Ambassador in reply to PMRnewbie2017]

Should be required reading for all practitioners who have anything to do with PMR - especially the ones who claim PMR doesn't affect knees!!!!

And you have told me something - it mentions SHIN pain with Pes anserine bursitis! Answers some old questions!!

[PMRnewbie2017 in reply to PMRpro]

I've never been an athlete but always done a lot of walking, tennis, skiing, golf etc. I also have poor foot anatomy (rearfoot and forefoot varus) on the affected leg. I gave up wearing my corrective orthotic insole years ago so I'm not really suprised I've now got problems in the left knee. Hardly anybody has perfect foot function so it's no wonder many have problems as we get older, and when you add in wear and tear with osteoarthritis.............................

[PMRpro Ambassador in reply to PMRnewbie2017]

And rotten shoes!! It is said that if all women over 40 wore trainers there would be far fewer foot problems. I lived in Germany for most of my 30s and if you don't learn anything else there, it is that comfortable feet matter!

[Broseley in reply to PMRnewbie2017]

That's interesting. I found this article, which is good. sportdoctorlondon.com/pes-a... It is more common in athletes. The article also lists other possible causes of knee pain at the back of the knee.

My pain is more muscular and I can feel it only when I move. I've had tendonitis (in my elbow, ankle and shoulder) and the pain is more sharp and constant.

[valrene]

That’s how my pmr started knees and legs, Rheumy said it was OA sent me to physio where they looked at my x-rays said they couldn’t do a thing for me as it was all inflammation. Back I go to Rheumy meanwhile I’m in tears with pain, he still didn’t diagnose me, had a second opinion from another Rheumy he diagnosed me straight away.