Update from Norwich - Sub Chondral Insufficiency Fracture

[marionofnorwich]

I was about to do a general update just to encourage people on the PMR journey as I think it helps to compare. So I will start with that. I have now seen my rheumatologist 3 times (Max Yates at NNUH) wh has been great. The first tme referred me for a biologic clinical trial but I wasn't accepted as not relapsed enough, and so he saw me at short notice before Christmas 2020because I wasn't accepted so we needed another tactic. Since then have redcued from 8mg to 5mg, heading to 4.5mg and feeling better about PMR, though can still feel it in my neck and shoulders, just reminding me that it is still there.

But a year ago I had extreme pain in my right knee, like a bad toothache, as though my knee had been hit with a hammer and went through several mnths of really stiff leg muscles. I attributed this to Covid and so increased my pred from 4mg to 10mg. This was under my own steam as no guidance from GPs and I had not been referred to Rheumatology as was still under two years at that point. Both knees were stiff, legs felt as though I had sticks in them and right knee ore painful than the left but it graduall settled dow. Was referred for an Xray May 2022 which was finally done September 2022, results some weeks after by chasing, then an MRI in February and slow followups brings us to now. I have an ortho/physio triage phone call booked in for 24 March.

However! In the meantime, I saw Max last week and told him about this. He took charge and got hold of my Xray and MRI scans and phone me two days ago to say that I have an SubChondral Insufficiency Fracture and bone oedema - that is a lesion/fracture at the end of my femur within the knee joint caused, probably, by long term (2-3 years) steroid use - which could have been diagnosed last May (now wishing I had gone to A&E as I was tempted to do).

Since Max's call I have Googled quite a lot and found some useful information about both bone oedema and SIFK (as it is abbreviated to). Treatment is sometimes to advise non-weightbearing treatment (crutches) which I tried using in the early days but couldn't do with the main PMR symptoms of shoulders and arms. Apparently they can also squirt in a kind of paste of animal bone which grafts the bone together and fill the oedema bone (which seems to be a bit spongy). Apparently i don't have osteoporosis but there is some degree of osteo-arthritis - not surprising at my age (just turned 67).

Max has referred me to a orthopaedic surgeon so don't know how long that will take but at least he has intervened and speeded things up. I am going to comtinue reducing as fast as I can reasonably do so. Max has also ordered me a cortisol test though I realise that this may not be accurate but I do feel as though my adrenals are working as have been under 7 for a while now and don't feel unduly sluggish or tired - though moreso than pre PMR. Still quite energetic, just can't walk more than a few metres and the knee thing has affected my left hip and thigh muscles so really want to get back on a level to see where I really am.

Hope this helps someone as I wish I could roll back a year knowing what I know now, and any views gratefully received.

[Longtimer]

So glad you are been se en by Max (I am also in Norwich) If things need sorting he will do it....hope y ou get sorted out soon. Keep us posted....

[Supertech in reply to Longtimer]

I also live in Norwich and only recently diagnosed with PMR in May. I have had the added complication of already having osteoporosis for more than 15 years. At present I had not been taking any medication for this as having a break as I had had three annual infusions. My GP referred me to NNUH for advice re starting alendronic acid treatment again asap but have just received a letter today saying there are no appointments.

My question is did you see the consultant privately or through the NHS please? I cannot see his name mentioned at the local Spire hospital.

[PMRpro Ambassador in reply to Supertech]

Max Yates does not do private work - he is a research registrar doing some clinical work.

[Supertech in reply to PMRpro]

Thank you for letting me know about Max Yates. I’m seeing the GP again in three weeks following my first taper this week from 15mg to 12.5mg. This has gone well but I delayed a week to 4 weeks rather than 3 weeks and he would like like me to taper to 10mg after another three weeks which I think is a bit quick and perhaps too much taper. I have really appreciated the advice and knowledge on this forum from you and Dorset Lady in particular.

[Longtimer in reply to Supertech]

Yes PMRpro is correct. I would say he is certainly worth waiting for Dr Max Yates, did your GP try Rheumatology or Endocrinology. Never quite sure what dept deals with the infusions, the reason I say that is the Endo doctor asked about this when she rang this week, as I also have Osteoporosis, have had 1 infusion so far of Zelondronic acid. I am presuming your GP diagnosed you? Keep in touch if you need to. Good luck

[Supertech in reply to Longtimer]

Thank you for your helpful comments. I will see my GP in three weeks so will speak to him then about who I have been referred to. I did go through endocrinology for my infusions. Maybe a long wait to see anyone unless I go private.

[Longtimer in reply to Supertech]

My GP in the Norwich said I can request who you want to see but can’t guarantee it. He’s worth waiting for! I have seen two others at the N&N, not a good experience at all…

I think I waited a few weeks to see Dr Yates, not helpful either that strikes are planned and it’s summer (holidays)…Keep us posted, contact or PM me if you have any questions.

[marionofnorwich in reply to Supertech]

I just hit lucky I think . I had just been referred to the Rheumatology service (after two years of steroids) and was tipped off that he was the best rheumatologist for PMR so I asked my GP to refer me to him specifically and at the same time emailed him/his secretary to ask them to pick it up at the other end. Unfortunately the advice is that PMR be treated by GPs for two years and only if it doesn't go by then to refer to a rheumatologist. I had a big flare after 20 months when I got Covid and had to go back to 10mg and work down again so after another year I am almost back to where I was April 2022. To be honest though, I moreorless self-managed quite well up until the flare/Covid when everything seemed to go haywire. I am not sure how helpful a rheumatologist can be, though now I do find it reassuring to be able to email one person who understands the condition rather than many different people who have little knowledge which was what was happening at the GP practice, hence the self management. It was when things went haywire that I discovered this forum as I had no other guidance and was floundering around trying to understand what was happening to me.

Things are better now I have the forum and also Max Yates who I can email if I need to. I don't talk to the GP about it any more and still waiting for it all to go away! See if you can get a referral

[Supertech in reply to marionofnorwich]

Thank you Marion of Norwich for your reply. It’s early days for me yet but I have been so thankful to find this forum.

[SheffieldJane]

Thank you for sharing your useful story.

[Thelmarina]

Thanks - very helpful 😀

[tempusfugi]

Thanks marionofnorwich, for your very useful post. I, too, am in Norfolk but not Norwich as you and Longtimer appear to be. Unlike you both, my rheumie is not Max Yates but I have attended NNUH. I was diagnosed with PMR a year ago, this month, somewhat unbelievably, and have had trouble adjusting to side effects of Pred, particularly with pain at the back of my knees, which has been overtaken by other problems. Just thought it useful to touch base with you and acknowledge your helpful post.

[marionofnorwich]

Thank you tempusfugi i am glad that my post was helpful. Though i noticed some errors! Always happy to speak on the phone if i can help. I did have a pretty steady course for the first 18 months reducing from 15mg to 4mg just before this knee thing blew up. But all seemed to go a bit haywire when i started on Amlopodine for blood pressure which really made my legs swell up. But i did have swelling behind my knees too. I would say keep up the calcium supplements. I took them but not two tablets every single day. Not sure if it would have made a difference though

[tempusfugi]

Hi marionofnorwich, I apologise because I've only just seen your response to mine above. Have been looking at your PMR journey and have come across this! I have PM'd you this morning with some queries. If it would be easier to speak on the phone, just let me know. Thanks.

[marionofnorwich in reply to tempusfugi]

Sorry about delay in replying but have forgotten where your PM came in. I am away this week but will reply aa soon as i can

[tempusfugi]

No probs. I did send you a PM t'other day which will be seen under 'Chats'. No hurry for response. Hope you are having a nice time wherever you may be.🙂

[marionofnorwich]

Maybe we should have a Norwich get-together ?

[PMRpro Ambassador in reply to marionofnorwich]

Excellent idea - and invite Max to speak ...