Bit of a ramble but this is the only place that I can ......... I am down to 4mgms pred. When I last saw my Rheumatologist 6 weeks ago I told him that I thought I had sciatica .Been suffering pains down leg and lower back pain and was generally aching all over. awake at night He said that the pains were not to do with the pred and I must get off it and continue to wean at 1mgm/month.Also said that I should no longer use nsaids as I now only have one kidney. Sent me for X-ray and mri scan ’in case there were any fractures” I am still on 4 mgms and have not heard anyting so assume nothing showed up.
Today my general aches have eased but pushing my wife around the hospital in a wheelchair the day before yesterday my damaged knee,bone on bone, flared up again and I was unable to put foot to ground and ended up having to be wheelchaired to my car! fortunately automatic.
Pain was agonising and had to pay to have Ultrasound and 5 phials of fluid drained and steroid injection that night. Today pain has eased but sore so resting. I have visited this therapist before and trust him. He is suggesting if this keeps happening we try something else,I think Hyaluronic Acid.
The knee replacement was turned down a whle ago. I could get it privateley but wonder how we will manage if I am off my feet or the op has complications. Give the Hya luronic acid a chance?
On the positive side my general aches and pains have eased and we are so fortunate that it’s a loveley day and we are able to sit in our garden in the sun.
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Teekay2
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On what grounds was the TKR turned down? How long ago? Seems strange if you are bone on bone. I would ask the GP for another referral - to someone else. If the knee is getting worse, then that may be the source of the back and leg pain as you are walking wonky. And quite how your rheumy's crystal ball can say with 100% certainty that it isn't due to a need for more pred I'm not entirely clear.
Just a suggestion - next time at the hospital take YOUR crutches, Then someone other than you will have to be the porter. As they should be anyway.
It was pre-covid and is worse now. As long as I was getting around with my stick they did not want to do it.We discussed how I was prone to infection/slow healing and had been hospitalised twice with sepsis so may have influenced them.
To be fair to the hospital when they saw me struggling they were all kind and helpfull. I should have accepted help sooner. As my wife says "you never learn,always overdoing it" Not any more,I am going to ask the GP to refer me again.
Like PMRpro I’d be chasing up the knee replacement through the NHS… and there is always a way to get help afterwards - even if you have to pay for that yourself. But what you’ve saved on private surgery can be spend on that.
It’s only going to get more painful…the longer it’s left..
I get hyaluronic acid injections in my knee. I do find they help but i am not bone on bone. Sounds more replacement time. Not that im an expert but it sounds bit late for hyaluronic acid injections. If you do try them, they take a bit to work, not immediate like say steroid injections, but i didnt get any relief from sterood injections in my knee, hence the hyaluronic. Best of luck, hope you get sorted, sounds excrutiating.
2 stories here: my late mom was suggested to have a TKR at age 82. She was hypertensive and large but otherwise very spry. Being afraid of doctors she refused. She lived to 93 in daily pain and increasing disability relying on others; my husband, now almost 90, had the TKR at age 86 and still plays tennis. He takes care of me!
Please never assume that if you don’t hear anything the tests must be normal. Sad to say but you cannot rely on the system working like that any longer. Recently, I have had things missed, a severe sinus infection, Avascular Necrosis and anaemia. I recommend asking your dr for a print out of all tests and images if you can’t access them yourselves electronically. You can usually get drs letters on the NHS app but I haven’t been able to get imaging reports. Hope you get your knee sorted soon.
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Any help please I’m desperate
How long until I can give up the Pred?
At 6mg is this how I should feel? 
pmr and now shingles
the rheumy is suggesting taking methotrexate as a steroid sparer... 
