I’ve not been on here for some time. During lockdown I’ve been reducing my dose of pred as I got Crushing Syndrome. I was on 30mg and I’m now down to 7mg. My face is slowly returning to normal and a lot of the swelling has gone down.
I am getting some return of my PMR, mornings have become a nightmare again, but I am struggling the most with the chronic fatigue. Some days I can’t left my head off the pillow and I sleep around the clock, but most days I wake up with what feels like a hangover.
Has anyone else had this? I’m really really not coping thanks
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Dee02
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Sorry I forgot to say, I’m not sure if I have GCA, I do have a mild pain in my right temple, but the left side of my scalp has numbness, it’s the weirdest feeling ever. I am waiting on a rheumatologist appointment, but one has left the local hospital and it could be up to a years wait. My GP has diagnosed PMR but they are reluctant to diagnose GCA.
From my referral letter the Rheumatologist said that my levels will be elevated as I’m over weight, and that he doesn’t think I have it, so from a letter I’m being told I don’t have it
So much has been written about the deathly fatigue that most of us get. It would be worth doing a search to see all of the previous discussions. Regular naps help with this.
Reading back over your story, I remember now that you’ve been both left to pickle in Pred and then been told to reduce far too fast based on out dated theories. You said previously that all you want to do is get back to work. You have two clouds on the horizon to consider here. First, is the return of symptoms edging back in and second, if you keep up this fast reduction, you will likely hit adrenal insufficiency which can be serious even life threatening. Your profound fatigue could be due to both these things rising up and need addressing because they are warning signs writ large. The face, I’m afraid is the least concern, though we all hate this bit. The good news is that you can get control of the diabetes and weight gain and try you must so they don’t get out of hand too, presenting you with other serious problems. Do this by going on a super low carb diet (Fats ok); it has been effective for many of us, even those with Pred diabetes and big gains and still on Pred.
I may be reading this wrongly, but it all sounds like being in a car with unbearable music in the back so you’re driving towards the edge of a cliff faster and faster to make it cease instead of stopping to change it.
Your symptoms are of concern, particularly the temple ones. Please don’t ignore this and your PMR because you just want rid of Pred. What dose were you last symptom free? If you insist on carrying on and have no other medical guidance I’d suggest from 7mg reducing 0.5mg every 6-8 weeks or more, or by the Dead Slow Nearly Stop method.
Love it - Crushing Syndrome! I suppose autocorrect gets some things aptly right I developed Cushings syndrome - of course we often do, we are taking more than a physiological amount of corticosteroids. But we know where it is from - Cushings is a problem when they don't know why, a cortisol secreting tumour or something. Mine reversed when I cut carbs drastically and lost the fat pads. The descriptive term is more accurate "Cushingoid", i.e. as if you had Cushings syndrome which you probably don't.
It is tripe to blame a raised ESR or CRP on obesity - I was probably obese, my levels were always in normal range. And PMR/GCA will send them up far more than being fat. But it sounds as if obesity will be the watchword for the next few months - it is all our own fault it seems.
If you reduce to too low a dose to manage the inflammation then the PMR symptoms will return - no ifs or buts. And if you reduce fast - as you have done, your adrenal function will lag behind the reduction in pred dose which replaces it above about 8mg/day.
Snazzy has said the rest for me - I don't know what to suggest at present. Patients with non-life threatening chronic conditions are in a no-man's land in some countries.
Was there ever a time since starting on 30mg when you were symptom free (or nearly) from GCA or PMR? Looking at your profile that seems doubtful. You need to be on enough pred to mop up the symptoms. I doubt you are. The head symptoms are worrying, and the other symptoms simply suggest you are on too low a dose. Tempting though it is when one wants to get back to work and is diabetic to crunch down through the doses it will only get worse.
So what should you do? You need to be on the dose which relieves the symptoms as well as 30mg did last September. If you were never symptom free ( or nearly) then 30 mg was not enough.
Are you allowed to up your dose on your own?
If you are I would go back to the dose which did the job as well as 30mg did (if 30mg made you feel better) I know you don’t want to be on more pred again but you need what you need to get rid of symptoms. Things will only get worse and take you even further away from returning to work.
Start a low carb diet ASAP to help weight reduction and diabetes.
Can you get a second opinion? Rheumatologist does not sound too impressive if what he meant is inflammatory levels will be raised cos you are overweight.
Nap every afternoon while you are feeling so bad. No point fighting it....
You are ill and cannot fight these diseases by force of will alone unfortunately.
Above all else, any eye symptoms, straight to A and E.
Thank you everyone for your replies and support. My GP will not raise my dose, I had to go in armed with NICE guidance to get the reduction done properly. One GP wanted me to reduce by 5mls a week.
I am back in work, well I have been and have worked through it, I’m currently off at the moment due to the fatigue, a mega flare up of my psoriasis (which was expected) and kidney pain.
I think it will be back to the GP on Monday and see what they say.... I’m sleeping my life away
I saw a rheumatologist many years ago as I have chronic back pain. I also have psoriasis under my nails which is one of the signs, but I saw her and she was very put out that her time had been wasted!! I don’t rate them in Wrexham
Do you mean Cushings Syndrome or do you just mean 'Cushingoid appearance' aka Pred moon face, so called because we look like people who have Cushings Syndrome?
Sorry yes I mean Cushing Syndrome, damn auto correct 🤦🏻♀️ you can get it from taking steroids, I also had the build up of fat on the back of my neck, weakness in my upper arms and thighs and purple strength marks. The “moon face” was terrible, some days my cheeks were so swollen I couldn’t see properly
No - what TC and I are saying is you don't get Cushings syndrome from taking pred, you become Cushingoid because you are taking the extra oral pred - but you know why, it isn;t an undetected medical problem, a tumour secreting cortisol for example.
Well I'm a bit confused but I may be wrong. I thought that Cushings Disease and Cushings Syndrome were interchangeable but they are caused by different glands. My endocrinologist was very keen to point out to me that I DID NOT have Cushings, just 'Cushingoid appearance' because mine was caused by the steroids rather than a gland.
What is the difference between Cushing's syndrome and Cushing's disease?
Any condition that causes the adrenal gland to produce excessive cortisol results in the disorder Cushing's syndrome. Cushing syndrome is characterized by facial and torso obesity, high blood pressure, stretch marks on the belly, weakness, osteoporosis, and facial hair growth in females.
Cushing's syndrome has many possible causes including tumors within the adrenal gland, adrenal gland stimulating hormone (ACTH) produced from cancer such as lung cancer, and ACTH excessively produced from a pituitary tumors within the brain. ACTH is normally produced by the pituitary gland (located in the center of the brain) to stimulate the adrenal glands' natural production of cortisol, especially in times of stress.
When a pituitary tumor secretes excessive ACTH, the disorder resulting from this specific form of Cushing's syndrome is referred to as Cushing's disease.
As an aside, it should be noted that doctors will sometimes describe certain patients with features identical to Cushing's syndrome as having 'Cushingoid' features. Typically, these features are occurring as side effects of cortisone-related medications, such as prednisone and prednisolone.
From what I have researched I believe that the Syndrome is an excessive amount of cortisol, and be that by steroids or the adrenal gland. The disease is excessive cortisol that is not related to steroids.
It’s all very confusing, but I had more symptoms than just the moon face
Yes it's all very confusing but at least you prompted me to learn something today! Whatever you had it's grim and a horrible side effect of Pred. A photo of me from 4 years ago popped up on Facebook last week and I look like Humpty Dumpty compared to how i look like now. Interesting that the steroid injections haven't caused the Moom face and Buddha Belly like the pred does.
Exactly - the difference is where the cortisol comes from. The difference between Cushings syndrome/disease is where the cortisol comes from WITHIN the body while being Cushingoid is due to exogenous corticosteroids (pred and co).
"Cushing's disease is used exclusively to describe the condition of excessive cortisol arising from a pituitary tumor secreting the hormone ACTH"
Syndrome covers all the rest - whether endogenous or exogenous sources of corticosteroid. But a lot of doctors use the term Cushingoid for a patient who is taking steroids and develops the typical signs - not all do. I did with methyl pred but not with prednisolone or prednisone.
Yet I've been fine on Methyl pred but not prednisolone, or is it because the former was injection rather than tablet, I don't know, maybe bit of both. Could also be that I do very low carbs these days whereas 4 years ago I had never heard of it.
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I developed Cushings syndrome - of course we often do, we are taking more than a physiological amount of corticosteroids. But we know where it is from - Cushings is a problem when they don't know why, a cortisol secreting tumour or something. Mine reversed when I cut carbs drastically and lost the fat pads. The descriptive term is more accurate "Cushingoid", i.e. as if you had Cushings syndrome which you probably don't.
Pred reduction
Pred dose post hip operation
