Problems with artheritis after long cortisone tre... - PMRGCAuk

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Problems with artheritis after long cortisone treatment?

Pirnilla profile image
30 Replies

I am in remission since April, so happy to get out on the other side of this journey. I am experiencing something that I think is the start of artheritis in my left knee. I can’t straighten it easily and lean on it in the mornings. During my time on Pred I got artheritis in my left hip. I wonder if someone have some statistics on how the cortisone effects the joints and cartilage. I feel like my body could just be taken apart in pieces eventually....

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Pirnilla profile image
Pirnilla
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30 Replies
piglette profile image
piglette

I saw an orthopaedic surgeon who blamed pred for destroying the cartilage in my my hip. I have been have PRP injections in my knee which seem to be working although I was a bit sceptical initially.

SheffieldJane profile image
SheffieldJane

I know that my knees and ankles hurt a lot in a sharp Osteoarthritis type way as my Pred dose went down and my PMR symptoms lessened. Some of my OA deterioration had been masked by Pred. I am also nearly 5 years older and have been much more sedentary.

Pirnilla profile image
Pirnilla

My question concerns if the long term use of Pred makes me more likely to develop artheritis. I am off Pred since April this year and didn’t have any signs of artheritis before my PMR debute in Octobre 2017. Now I have problems with both a hip (where x-ray shows beginning of artheritis) and lately a knee bothering me.

SnazzyD profile image
SnazzyD

I have no statistics but half a suspicion that Pred may have brought along arthritic changes. After 3.5 years on Pred I’ve developed arthritic changes in my fingers, knees and toes. Nothing terrible at all, but noticeable and the fingers have been diagnosed when I went for a scan for a dodgy vein in one finger (chemo, old dog bite). I will be 58 in the New Year and started high dose Pred aged 54 totally fine. There is no family history anywhere and there was no hint of it before. I have been rehabilitating from tendon problems too so I assume cartilage could easily have been affected. Would I change anything? No. Staring down the barrel of GCA and impending blindness, possible large vessel inflammation and stroke, the bargain would have still been simple. I would not have reduced any quicker as I now see so many with flares and yo-yoing on this site possibly from this. It’s still disappointing isn’t it?

Pirnilla profile image
Pirnilla in reply to SnazzyD

No, looking back I couldn’t have done it in any different way. A life with PMR and without Pred would have been impossible. My taper period was all through manageable and I am grateful for that. Just sad now that my body feels so much more work out, than before. I thought (maybe naive) that if I got off Pred my life would somehow go back to normal and I would feel strong and healthy. I just turned 50 and feel like 80....

SnazzyD profile image
SnazzyD in reply to Pirnilla

Yes, that’s how it was sold to me too.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

I was assured by a rheumatologist that I had OA, very early in the PMR journey when I was referred because of severe hand pain but she claimed she could "feel" OA in my knee which was also sore. That went on for 5 years before I saw another rheumy, this time with various imaging being done but no mention of OA at any point, and then I started pred at 15mg. Within 6 months all the hand, hip and knee pain was gone. A couple of years ago the knee pain returned and the GP sent me for an x-ray in case it was OA. No sign at all, and the pain disappeared a month ot two later.

Pirnilla profile image
Pirnilla in reply to PMRpro

So, what do you consider caused your pain? PMR?

PMRpro profile image
PMRproAmbassador in reply to Pirnilla

I think so - the hands and feet were tendinitis/synovitis. The knee - don't know. Originally synovitis and then just a blip ...

DianeA1 profile image
DianeA1 in reply to PMRpro

Yesterday's discussion about bursitis was very interesting. Can one have undiagnosed bursitis for years? Can it last only days?

Is tendinitis/synovitis pain similar to bursitis and/or arthritis?

Thank you

PMRpro profile image
PMRproAmbassador in reply to DianeA1

Probably - bursitis can be quite persistent depending on the underlying cause.

my.clevelandclinic.org/heal...

Overuse that isn't moderated, badly positioned joints, spurs or calcium deposits - all those and other things like posture could underly it and if they are not sorted out it will just continue.

DianeA1 profile image
DianeA1 in reply to PMRpro

Wow, that is something I will bring up because everyone has just said 'arthritis' without any tests or xrays or anything.

Thank you so much!

SnazzyD profile image
SnazzyD in reply to PMRpro

Did you ever go back to her with the actual diagnosis?

My fingers are not painful at all unless they get cold or it do a lot of gripping and then it is in the morning and goes with use. One can see the boney bits are changing. Same with my big toe joints though that is genetic. My knees can feel like there’s something catching like cartilage but that sorts itself out if I keep moving.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

That would mean at the least a return to Durham - but I think she is now retired or has moved since a few years ago I was told UHND had no rheumatologists for patients with GCA to be referred to!! Not necessarily a bad thing in that Gateshead QE is infinitely preferable ...

DianeA1 profile image
DianeA1

I have noticed that I look ancient: my skin is thin and wrinkled and my muscle tone is coming back with PT but not like before and I am only 65. Old sports injuries are very painful.

SnazzyD profile image
SnazzyD in reply to DianeA1

Well I’m nearly 58 and my muscle tone is very shy. Before it would bounce back with a good thrashing when I was 54 but now it have to coax them politely and then they think about it.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

And occasionally decline - and not even politely ...

Alandronic profile image
Alandronic in reply to DianeA1

What you say interests me. How long were you on Pred ?

DianeA1 profile image
DianeA1 in reply to Alandronic

Hi, if you click on my icon it will take you to my profile where I have put the dosage details. I got an xray on my hip and back today (!) to see what is up. Basically, I was diagnosed 1/2018 and went to zero on 9/29/20 and back to 5 on 11/11/20, now at .5 for a while because of bilateral pain in shoulders, hands, which was all too familiar.

My face and neck have lots of tiny wrinkles and my arms' skin and legs' skin is paper thin.

All the best

Alandronic profile image
Alandronic in reply to DianeA1

All so familiar! After 11 years on Pred my adrenal gland still alive and kicking ! So reduction started in may/June 20. From 5 to 4 mg for one month then to 3. Trouble set in. Full aches pains, OA diagnosed. Thumbs now almost useless, finger joints swollen and nobbly. Face skin thin and very wrinkly. Hand skin thin...etc etc...awful. i'm 70 but must accept this look. It won't change. In process of further tests to see about further medication. Feel and look 80 but my spirits are high. In a way, thank goodness for prednisilone...always possible side effects with all meds.

DianeA1 profile image
DianeA1 in reply to Alandronic

I am not well versed yet in this OA and hope you have a doc. I am slathering on lotion! So glad your spirits are high, as are mine.

Be safe

suzy1959 profile image
suzy1959

I got severe painful OA a couple of years into my PMR journey. First one knee, then the other and then a hip too. Surgeons refused to operate on me, so, by the time I found a surgeon who would, I was needing 3 joint replacements and hardly mobile at all. The other hip joined the party after my first op. too, so all in all, I have 2 new knees and 2 new hips.

My feeling is that I probably would have got OA anyway but that it’s progress was considerably speeded up by the Pred.

HeronNS profile image
HeronNS in reply to suzy1959

That is probably true. I think all I did in pre-PMR days probably helped me great deal. Avoided nsaids except for headaches, and took glucosamine. Also my work in a children's library kept me active and maintained strength and flexibility. Retirement and PMR are another story....

HeronNS profile image
HeronNS

I had osteoarthritis long before pred struck. I didn't know until quite recently that prednisone would have a bad effect on my joints, but there's nothing I could have done about that anyway. I always avoided taking painkillers for the arthritis as I knew nsaids interfere with cartilage renewal so that probably put off serious problems for a long time. I have serious problems with my knees now. I broke my leg a few months before PMR symptoms started (2014) and x-rays showed what the doctor said was the very beginning of OA in the knees. I started pred the following year after many months of undiagnosed symptoms. Five years later I have severe arthritis in both knees and have excellent physio to thank for being able to bend my right knee again. (It was the left knee which was injured twice, so go figure :D .) This is beginning to make properly treated PMR look like a walk in the park!

HeronNS profile image
HeronNS

I guess it has a similar effect as the nsaids, it causes damage to the cartilage. I do know that they've found numerous injections of cortisone eventually damage the joints so now they are limited to somethng like three. I didn't know oral cortisone also had an effect. But, as I said, there was really no choice about taking it, and because of other "hidden" side effects (increased ocular pressure, elevated blood sugar, possibly bone thinning) I did get my dose as low as possible as quickly as possible. It certainly hasn't helped being on pred for a long time - I guess this is one of the reasons why there's concern about "cumulative" dose.

HeronNS profile image
HeronNS

I can't find where I read about this, unfortunately, although I did find mention of damage to the hip caused by oral corticosteroids. We do know that necrosis of the hip is a rare side effect of even low dose prednisone. I just find it interesting that there was a rapid deterioration of my knees after starting pred, when I had actually been diagnosed with OA nearly 30 years earlier and had not seen much progression.

Ciar profile image
Ciar

Sorry I’m late to this thread, but I just want to add my experience. Before PMR (age 61, I’m now 65) I had no osteoarthritis pain anywhere. There was some evidence of it in my neck X-ray, done when diagnosing PMR. The neck pain I was having then was definitely PMR as it disappeared with 10 mg prednisone. 2 years into my PMR I suddenly developed new pain in my hips and wrists. X-rays show osteoarthritis in those joints and now developing in my lumbar spine as well. It got very bad quickly and a year later I was scheduled for hip replacement. Didn’t happen due to Covid. I’m having a lot of pain everywhere that doesn’t feel like PMR that is worsening as I reduce my prednisone below my 6 mg, but I doubt my new rheumatologist will support me continuing that dosage. Anyway, for me, widespread osteoarthritis followed PMR and steroids within 2-3 years.

Pirnilla profile image
Pirnilla in reply to Ciar

I wonder if it’s the illness itself that makes this develop or the long term use of Pred. Maybe noone knows. I can’t find any good research about it.And, of course, if they found out that cortisone gives this really bad side effect they would have to start looking for better ways to treat PMR. Cortisone is so cheap and efficient so I think that they want to stay with that routine if they can.

PMRpro profile image
PMRproAmbassador in reply to Pirnilla

"of course, if they found out that cortisone gives this really bad side effect they would have to start looking for better ways to treat PMR."What makes you think that? My husband is profoundly deaf as a result of a cancer therapy but they still use it. You have to know the cause of a disease in order to seek better option - and no drugs arrive with no adverse effects. It is a balance and for the vast majority of patients pred does a good job of management until it goes into remission as it does for most patients. They don't know the cause except the role of IL-6 in many cases. There are potentially better drugs - but they too have the potential long term adverse effects and are prohibitively expensive for such a common disorder that they perceive as not lasting long anyway.

Ciar profile image
Ciar

I really don’t think prednisone has caused my arthritis. I haven’t been on a very high dose very much. My starting dose was 10 mg and I’ve usually taken 5-7 mg over the past 3 years or so. I think I have a lot of inflammatory problems that started about the same time I got PMR. The arthritis is just one more thing I got since PMR began.

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