Long term joint damage

[Towdy]

Hi, any thoughts on whether if you decide to have pred as low as you can tolerate and put up with a certain level of pain whether there is long term damage to inflamed areas? Some people do not take pred, is there long term outcome any different ?

Been on pred 13 years now for AERD & CIU & can’t take the risk of taking too much pred. I am adrenally insufficient (synacthen test twice) and now take 10mg of pred daily. It would help me with tapering if I knew how much of the pred is physiological equivalent of cortisol and how much is to control PMR?

Great site , really appreciate all the varied posts

[PMRpro Ambassador]

There is no long term joint damage in PMR - it is most likely a vasculitis (inflamed blood vessels) and inflammation in soft tissues around the joints. Any damage done by not taking pred is likely to be to the blood vessels but the mechanism isn't clear. GCA is felt to be more likely to develop in untreated cases of PMR and then the situation is rather different as it depends on what arteries are affected and causing reduction of blood flow. There is probably an increased risk of stroke or other clotting events and obviously always of loss of vision - suddenly or as the result of AION over an extended period.

emedicine.medscape.com/arti...

You can't compartmentalise in that way - the pred is present systemically and working for both requirements in parallel, Just like a dose of an NSAID would stop the pain of a headache and a torn muscle.

For many years, the physiological equivalent has been said to be about 7-8mg prednisolone but a fairly recent study suggested it might be lower. However, everyone is different and many people are already experiencing the effects of poor adrenal performance as early as 10mg, sometimes higher, in the form of excessive fatigue. Others may get down to 2 or 3mg and have no adverse effects - but it is also possible to feel perfectly OK day to day at that dose but there is no reserve adrenal function in the event of stress in any form, from emotional through illness to injury. Then there is a risk of an adrenal crisis, requiring immediate rescue medication in the form of an injection of hydrocortisone but potentially also hospital treatment if it is severe or not recognised and treated in a timely manner.

But it is a balance between the dose you require to manage the PMR and the adrenal function returning - and that is different for everyone.

[SheffieldJane]

During my recent Colonoscopy, the doctor was doing the calculation of Prednisalone = Hydrocortisone dose, out loud. He arrived at 50 mgs of hydrocortisone being the eqivilent to 10 mgs of Pred. I am on 7 mgs of Pred but he was taking the procedure into account. Hydrocortisone is both weaker and a dose lasts less time than a Pred dose. This makes it a better substitute for the body’s natural cortisol as it behaves in a more similar manner. My Endocrinologist plans to use this in order to help my natural adrenal function to recover. This maybe part of your solution too. When the time comes. I would seek the additional support of an Endocrinologist.

[Towdy in reply to SheffieldJane]

Thanks Sheffied Jane. Already been on HC at 4mg equiv to 1mg pred; did not go well and gladly reverted back to pred. Under Endocronology at Guys as well as Asthma and rheumatogist in Haywards Heath. On a biologic ,Dupixent which may cause PMR symptoms and seeing my ENT Dr at UCLH next week to discuss. Sometimes I feel one person to deal with all issues would be much better. Toss up between PMR and CIU as to which is harder to deal with in the long term.

[Amkoffee in reply to Towdy]

The nice thing about HC is that it can easily be spread throughout the day. I take a dose every 4 hours. With pred it's hard to divide up 10mg into enough smaller doses to get you thru the day. I take 10mg in the morning, 10mg at lunch, 5mg at supper and 5mg at bedtime. 20mg of HC is the equivalent of 5mg of prednisone.

[Longtimer in reply to SheffieldJane]

I would love to see an Endo and discuss going on HC, but they won't see me until I'm on 5 mg at my hospital (on 7mg).....

[Broseley in reply to SheffieldJane]

How did your colonoscopy go? Was it not as bad as you expected?

[SheffieldJane]

Was this relief in getting back to Prednisalone preferable because it is much more effective in controlling the symptoms of our autoimmune diseases.I felt good ( more like myself, my husband noticed) on 50 mgs of hydrocortisone for one day. I wonder if this points to sluggish adrenals being my problem?

[powerwalk in reply to SheffieldJane]

Thats interesting Jane. I've, as you know, been wondering if i might benefit from HC instead of pred as i feel so rotten, but then I wonder about the pain element. Though im taking more painkillers anyway. The endo told me (over a year ago)im unlikely to get adrenals back but then just passed me back to the rheumy! Its hard to know what to do. At least ur guy seems interested!! Id love to feel like myself, can barely even remember what that is, except this isn't it! Such a minefield.

[piglette]

You really can’t tell for sure that your adrenals will never work again until you are down to about 3mg. and even then they might work eventually. What dose were you on when you were tested?

[Towdy in reply to piglette]

I was down to 3mg (prior to. PMR) when synacthen test done. Low doses of pred below 5mg make me suicidal & I do not sleep however I do not suffer from adrenal fatigue. Must have taken on average 10mg/day of pred since 2010 & it was only on PMR site I heard of adrenal fatigue. I think I will never get off them. My life is still busy and I am still active ( work thru morning pain & have good afternoons ) .I am interested in how cortisol levels vary with activity and ageing. What do Addison disease folk take if they run a marathon ?

[piglette in reply to Towdy]

You say you do not suffer from adrenal fatigue below 5mg, I don’t understand, I thought you were saying you do suffer from adrenal fatigue?? I am not sure that a low level of steroids would make you more suicidal I would have thought it more likely that a high level would.

[Towdy in reply to piglette]

Thanks for article just what I was after as I am physically very active. Just finished lambing 400 sheep. No, I said I do not suffer from adrenal fatugue ; never heard of it before PMR site. I know I am AI and endocrinology are aware of suicidal /mental health issues on low pred and are putting a support programme together for me if I ever get back to 5mg At higher levels I am hyper but otherwise, luckily, I have no side effects.

The Addison's is interesting as some will still take part in excessive exercise and I assume will follow sick day rules.

A big thank you

[PMRpro Ambassador in reply to Towdy]

I certainly never refer to adrenal fatigue - no such thing. If I have used the term it was a real oversight. What we talk about is adrenal insufficiency secondary to long term use of corticosteroids.

"What do Addison disease folk take if they run a marathon "

Anyone with Addison's is likely to be on prescribed long term hydrocortisone as a replacement therapy.

pubmed.ncbi.nlm.nih.gov/187....

It depends on the intensity of the exercise - see the final 6 lines. They won't vary in a patient with a blunted adrenal response - as found in patients on pred above about 8-10mg pred/day or who are suffering adrenal insufficiency secondary to long term steroid therapy