Looking for your thoughts please , I see my Rheumatologist in 3 days and I think he may want to change my current 5 mg Prednisolone or even add something in . I feel reasonably well informed and have no issue with pushing for his rationale behind his thoughts .
I can’t really say I have any pain , I do have Osteoarthritis in shoulder , neck hands etc . My problem is I am at a different level of Fatigue , nausea, some dizziness and insomnia off the scale . I have been on 5 mg for almost 3 months and for a while I seemed to improve then have a blip then pick up …… the last 4 weeks are very different . I would say a little scary at times .
Sorry to ramble I think my biggest problem is now A.I. How do you think I should approach my appointment ?
Thank you one and all 🙂
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Hi thanks for quick reply , this just seems to be gradual I actually thought I had cracked it a month ago and felt great until a bike ride which as previously posted knocked me for six . It’s just getting worse and my life is grinding to a halt …… if only there was a crystal ball .
Well often I can’t get to sleep until the very early hours i.e 4 am and then for a few hours only or I spend the whole night waking going on and off . I have employed all the good sleep hygiene methods and fortunately am now retired .
Not helped by the fact I have Restless Legs which I have had for years , thankfully not every night .
I heard some advice on a radio program about sleep and the specialist said that if one can’t get to sleep, get up for 15 minutes or so and try again. If it doesn’t work in half an hour or so, do it again. I find this very helpful.
My husband suffered with restless legs for years until we saw a consultant Neurologist he prescribed Ropinirole 4mg long release tablet.taken early evening To date they are very good at relieving symptoms.
It certainly sounds like adrenals stuttering - plenty of info here - but as SnazzyD says any additional stressors over the last few week/months that could make them struggle even more [doesn’t take a lot when they are not up to scratch].
Thanks Dorset Lady I agree can’t see any point in changing or adding anything else especially as I don’t really have any PMR symptoms , except fatigue . Also early morning Cortisol 406 nmol/L which to me seems illogical if my Adrenals are as bad as I feel 🤷♀️
Test only shows adrenals are capable of working- not that they are or how well….. and lot more complicated than just one thing…. Much like many a machine - all the component parts needs need to be in sync… 😊
If that is a basal cortisol, that is almost in normal range but not quite - and doesn't show if they are responding when you need a spike to deal with extra demand.
It sounds as if that bike ride has caused trouble - have you been resting to recover since or have you tried to carry on?
I agree and yes really pacing myself but I would say getting worse if anything . Perhaps a diary would help it’s easy to miss the small positives when you feel rubbish .
The question is as to whether long lasting DOMS effects are due to inflammation or something else. As Snazzy says, pred doesn't often relieve DOMS which suggests it isn't inflammation.
No point at all adding another immunosuppressant at this stage - whatever the rheumy may say. Some immunologists are actually concerned about the way rheumatologists pile up immunosuppressants with gay abandon and suspect it may be storing up problems for later.
I felt really good at 5mg for a couple of months and then it seemed to catch up with me for a while. Now it seems to be improving again. I suspect it can take a while to feel there is very slightly too little steroid around - and then the adrenal function adjusts. But I don;t know that is what happens.
Oh how very true! I was 70 at diagnosis, felt 50-60 despite various health problems. Since PMR came along I feel 80 most days. Sorry, not very cheerful 🥹x
Reading this paper felt so relevant to me. Its hard to process the shock of going through the acute stage of PMR/ GCA when it is undiagnosed for many months. For some of us going through it alone adds to the difficulty. And as not many people have heard of it short of giving them detailed talk on it no one else necessarily gets the trauma of it. Thank goodness for the site.
My adrenals started conplaining at around 5mg. I had unbelievable fatigue, but had no pain. If you don’t need to increase the steroids don’t. I must admit I did go up 1mg as the fatigue was becoming crippling, but I was feeding the adrenals not the PMR!
Exactly Piglette 😞 I think the thing I am finding most distressing is that I have been taking 5 mg for almost 3 months and while not perfect fairly OK and managing . This current “Phase” is a whole new level with what I would describe as full on A.I. Symptoms , I get that a couple of bike rides could / has knocked me back but that was about 3 weeks ago and I feel like I am getting worse !
But of “how long is a piece of string” question in that it varies from person to person.
Mine took about 8 months of stuttering -very slow tapering - fortunately only had random bouts of fatigue which weren’t too bad compared to other’s experiences.
If you don't have PMR symptoms after 5mg for 3 months is it time to taper? You might feel better exhaustion wise on less pred. It might encourage adrenals to wake a bit more. If people are not getting symptoms at this low dose my feeling is it's better not to stay on a level for too long because adrenals can become complacent. (Just my thoughts, no evidence behind this, but I think that is the case with me.)
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