I was diagnosed with PMR in Sept 2022. I have been prescribed higher mg of prednisolone however 10mg/7.5mg alternate days for the last year until a PET scan in Sept this year. I was advised to drop to 4mg immediately for the scan. The scan showed no PMR present. I had a cortisol test 3 weeks ago which showed normal levels. I was prescribed methotrexate during the year as a sparing drug because the steroids had an adverse effect. This didn't work so the rheumatologist prescribed leflunomide which again didn't work. He wanted to put me on a biologic which I was to inject at home, the name of this began with T. The diagnosis of PMR never felt right. I explained my symptoms thoroughly in each of my 4 appointments with the rheumatologist. When he suggested the biologic I put my foot down and the PET scan was organised. My question to the forum is - I have results back which say I gave normal cortisol levels, do I need to taper off prednisolone? Can I just cease taking them? I've had a year of hell with drugs I've not needed. Please advise. I have no faith in the consultant. Thank you for reading.
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Bargin_ninja
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I wouldn't just stop - especially at that dose, whatever the cortisol test says, I find it very unlikely that at that level of dose your cortisol is perfectly normal since it is high enough to suppress cortisol production under normal circumstances.
I'm also sceptical about his suggestion of the biologic since you are in the UK - tocilizumab is not approved for PMR, it only available on a limited basis for GCA, How long had you been on 4mg pred before the PET scan?
I'm just lost with the advise, suggestions and prescriptions from the consultant. The symptoms are the same as I originally approached the GP with the fatigue, aches and pains etc. The diagnosis was made as I responded well to pred however I feel considerably more pain as the day goes on. The pain is changes limbs and torso intermittently. I have shooting pains, pins and needles and numbness in muscles, nerves and joints. Incontinence as well.
I had reduced only 2 days before the scan to 4mg. I honestly feel stonewalled and not listened to. Science is king not the patient. I used to be in technicolour now I'm black and white.
I think you probably need a different rheumy - because this guy has really offered some very confusing options. And all in a period of barely a year. I would dispute that 2 days on 4mg was long enough for the PET-CT to show anything reliable, pred interferes with the signal and suppresses it.
Pred is not the entire answer - you can't take it and immediately go back to your normal activity pattern, you have to do your part in managing the fatigue and other symptoms. You need ENOUGH pred, take even 1/2mg too little and you will back to the beginning as the pred has no effect on the actual disease process that causes the inflammation. It continues in the background creating inflammation, All the pred does is mop it up to relieve the symptoms. Nothing else.
However, what you describe isn't really a common presentation of PMR - not saying it ISN'T PMR, I am saying there are questions that need to be answered. Where in the UK are you?
I'm in Leeds, I really hear what you are saying as it totally resonates with me. I am not a wallflower and Dr Barr doesn't like to be questioned. I'm so frustrated. I'm too young to be at home watching the tree out of my window change with the seasons. I really am stuck with how to approach the system?
Hmmm - obviously treats his private patients rather differently judging by the reviews!!! It is a shame - you have probably one of the best PMR specialists in Leeds but getting to see her might be rather difficult as her waiting lists are rather long and she doesn't do private work.
You COULD try PALS (Patient Liaison Service), explaining the relationship is tense and you wonder if you could see someone else. Trouble is, you might get another difficult one. Someone on the forum from Leeds may be able to suggest another good PMR rheumy - you could ASK if Prof Mackie (THE PMR specialist) is an option because of your complex medical background and she is a woman ...
My gentleman GP is a rare gem and I trust him. I haven't an appointment with him until 13th Nov. Hence my Q re the steroids. My cortisol results were text to me. It's a queer predicament. His hands are tied because I'm under Dr Barr. I've had to chase up every appointment with the rheumatologist and I've never seen a rhuemie nurse for follow up appts due to an over booked clinic and helpline service. Everyone is overstretched, I do feel for the staff behind the scenes.
You can ask him to refer you elsewhere - then you aren't under him. You can withdraw from care by Barr but I wouldn't do that until after you have discussed it with your GP. And actually - a lot of GPs DO ignore the specialist's instructions.
Hello there, I do empathise with losing one’s job and losing one’s “way as a human”. Was this die to your condition or prior to it developing?
Regards your just stopping Pred with good cortisol levels, I would be cautious. Optimistic but cautious. You have been on Pred for over a year, albeit not on a high dose. If you just stop at 4mg, there isn’t a guarantee that the adrenal glands will just pop out and equivalent amount of cortisol. Also, you have no idea how your adrenal glands will respond in an emergency situation like an accident. So if you do stop, take Pred with you for a year in case you taken unawares by an adrenal crisis. You are also advised to wear a medical alert too. Have a read about all things adrenal in the FAQ’s here.
Are you still symptomatic?? Scans can be influenced by the medications prior, as can happen.
What were the side effects you suffered with Pred?
Yes I'm still symptomatic. I would need much time to describe my year. The side effects have affected my mental wellbeing disastrously. I have a diagnosis of bipolar affective disorder from 10 years ago. The original reason for referral to a rheumatologist was because the steroids were resistant and causing mental mayhem. I'm still on them.
No wonder you are feeling confused. You do need another doctor. Try Dr Sarah Mackie, Chapel Allerton Hospital. just in case. She is wonderful. I felt sad when you said you had lost your way as a human and you have lost your job. You will find your way back and you need help to do so. The Biologic, Tocilizumab works well for some people, but first you need a correct diagnosis and Pred response is a good indicator.
You sound low, this needs attention too. Perhaps that should be your first step. Coming suddenly off Pred could be disastrous and possibly not the best move. Your current regime has already played havoc with your well being.
What effects did Pred have that were so unbearable?
I was getting nowhere with my first local (I live in West Cumbria) rheumatologist so went back to my lovely GP and we both agreed to find a second opinion. He asked “who would you like me to try and refer you to?” As he know I had been doing my research. I replied “Dr Sarah Mackie”. 3-4 months later I was sat at Chapel Allerton Hospital with her. If you have a good relationship with your GP then push them to refer you to someone else. And as you live in Leeds, Dr Mackie, or one of her team, would be a great, local alternative to the poor support you are currently receiving. She is well worth the 3 hour drive for me!!
I agree wholeheartedly that you should ask for a sideways referral to Sarah Mackie on the grounds that you have lost confidence in your present Rheumatologist, or simply that you would like a 'second opinion'. I am fortunate to have Sarah Mackie as my Rheumatologist and have supreme confidence in her as a clinician - just as important, she is a wonderful human being who will listen to you and hear what you are saying. She works at Chapel Allerton and Jimmy's.
I am sorry to hear how bad you feel. You say you have been alternating 10mg and 7.5mg daily which is a huge challenge to your body so I am not surprised you are feeling pain. Was that pred management recommended by your GP?
I would just add 'chin up' as you will get through this tough time. It sounds as though you need support and encouragement and you have has good advice here so i am just adding a boost of cameraderie, hoping that you won't feel so alone and at sea even if we are a community miles from you. Find support where you can and work your way out, you will get there. Good luck with a re-referral.
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