Hi everyone. I am in my 2nd round of PMR and have been on Pred since last July. Doc has got me reducing by 1mg a month and now down to 2mg. The trouble is, I have got exhaustion so extreme I am struggling to copeI have numerous Health Problems including Kyphoscoliosis, Afib and very severe Lymphodema, but am wondering if it might be Adrenals causing this.
I have also just recovered from a Folic Acid Deficiency.
Thank you Jenny
Highly likely to be adrenals... 1mg a month once you are below 5mg pred is pushing it... can you hold at current dose for a while and give them a chance to catch up.
I'm guessing the fast reduction is due to your other health issues.. but you certainly don't want an adrenal crisis on top of everything else.. think you need to discuss with GP as a matter of urgency
Thank you Dorset Lady, I have never felt so exhausted. As luck would have it I have got an appt next Tuesday about something else. The only trouble is they wont let you ask about more than one thing at a time.
Jenny
Only one thing at a time? If only our bodies worked like that., maybe you could sneak it in somewhere.. it is important … 😊
Thank you DorsetLady, I will try
1mg per month under 5mg can be much to fast for some. My Endocrinologist suggested that but having already been feeling that crushing tiredness I declined and stuck to no more than 0.5mg over anything from 8-14 weeks. It may be that your adrenal glands have coped up to now but need time to catch up with the demands made on them by your withdrawal of Pred and all the other stuff in life that challenges you. One thing is, you can’t tough out an adrenal crisis if it happens and you really don’t want to get that bad in the first place. A couple of mg and a good rest can make a world of difference and might tell you if you are barking up the right tree. Perhaps your GP would check your morning cortisol as a start and hopefully give their blessing to go back up a bit to where you can cope and then slow down your reduction.
Thank you SnazzyD for your reply, they just seem to want you off at any cost, dont they.
Jenny
I just don’t get it; there seems to be a mental block regards adrenal function and above all, the patient’s quality of life. Also these are not big doses. Are they seeing that many patients succumbing to side effects so bad that it’s worth risking everything else? I’d wager they don’t but there is still something that doesn’t compute.
I think GPs don't seem to know enough about adrenal function. After coming off Pred in November a few months later I had very high BP and few other symptoms and although the GP saw me quickly and suggested a variety of blood tests he said it could not be due to adrenal function as I had been off Pred for 5 months!
It isn't common for hypertension to be due to adrenal insufficiency - much more likely to be low.
Ok thank you PMR pro. Will check out my blood test results with Rheumi at phone appt next week.
If it is worsening as you taper - almost certainly adrenals. And Snazzy has said everything else I would. Is there a stated reason for the speed of taper?
No not really, when he put me on them he just said "one a day for a month until you are down to one and then off" very final..Jenny
he just said "one a day for a month until you are down to one and then off" very final.
Oh Lordy, what recipe for disaster… and definitely not down to one and then off! Any chance of seeing a different doctor?
What a plonker (to keep a technical term in circulation). That is VERY unlikely to be successful - the lower the slower. Yes, it works for a patient who hasn't been on pred long - a couple of months maybe, but for patients on pred for years, the adrenal glands have to be given a chance to wake up and they are not functioning the other side of a toggle switch that is either on or off, they get into gear very slowly.
Well, thanks to this forum, I go with what my body tells me. I'm doing 1 mg a month but if I get more than a day of bad exhaustion I up it --sometimes just need to do that for a day, other times more. My rheumatologist doesn't like it but my primary care dr, who treated PMR for years until they got a rhem in that system, is great support and so I just tell him about it and he is 100 percent with going how I feel. I understand their wanting us off it if possible given the possible bad side effects, but the rigidity is difficult to deal with. Of course I am also on Kevzara, which is supposed to help with tapering. I don't know what the story will be once I'm off prednisone --the Kevzara has only been tested for PMR for about a year.
I'm on 8.5. My GP has agreed to half a milligram reduction every 4 weeks as long as things are OK. That means I can get to 5mg without have to taper more than 10% at any juncture. He has supplied me with .5 Pred pills. What will happen after 5mg ... I don't yet know. Could you get .5 pills?
Do I need adrenal supplements?
Weakness 3 years post PMR diagnosis. Adrenal problems?
Time to reduce... I think?
Flair of underlying disease or adrenal problems?
How will I know whether adrenals are functioning?
