PmR for 11 years, two years ago managed a whole week without pred after a VERY slow descent with no troubles to speak of. Then life got stressful and I had to go back up and up until I finally settled on 3mg per day. I have been reducing slowly and have got to 2mg per day. I’ve had a busy week but I thought I had used my ‘rest days’well. However, a few days ago I started feeling a bit achy all over, headache and tired. Today, as well as the above, feel nauseous, jelly legs, spaced out and I have a bad craving for sweet things. I also feel very bloated. Given previous experience I am assuming this is to do with my adrenal function. If it is, do I sit quietly and wait to see if things get better or should I go back upon my pred dose a little bit? Thank you in advance for any advice.
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Crochetgirl65_
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Thank you, I will stick with it then. I really do get fed up with this at times. I never know whether to’dig in’ and put everything on hold or up the dose. The former course to be the case this time then. See how it goes. Thanks again
If you can, stick at 2mg for a while [as long as you need really] - but obviously if things get really rough, then just 0.5mg might make a difference...
If I wasn’t feeling acutely bad I went for the sitting still approach before upping my Pred. If that didn’t work and I was worsening with doing absolutely nothing I did a mg or two. It’s a balance of living life but not over doing it such that the current capacity of your adrenal glands is overwhelmed. If you up the Pred you just teach them to go back to sleep so as a frequent strategy it is putting off the ‘lesson’. It took about 18 months for my adrenal glands to get back to reliable normal activity on a daily basis after I stopped Pred.
Your set of symptoms do also sound the same as a virus my husband and I had a few weeks ago. Our guts are still a bit iffy and we were overly tired for a few weeks.
Thanks so much for the information. I have found this bit of the journey really frustrating. I’m not good at sitting still and doing nothing 😂, a lesson I have to learn!I
Interesting that you and your husband have had a virus with similar symptoms, let’s hope it’s that!
I think that all of us who suffered with adrenal issues found it frustrating- I certainly did, not least because it wasn’t until the third time of trying that I finally managed to stay at zero. Adrenals can certainly take their time!!!
Im finding very minor stress like a flat tyre or a family argument is leaving me very shaky, on 4 and 1/2 mg pred..... surprised but so far rest is enough ..... and disengagement .... I feel justified in not getting involved in things .... I am amazed at the complex balancing the body must be doing normally to keep everything ok! And after each drop in dose, a couple of days of gloom and inertia, then back to normal, so far.
Four mg level can be problematic for a lot of us. At that level I remember feeling like I was walking through water. Suppose it's the body's cortisol production stuttering back to life!
Sounds about right. Just shows though how we take it for granted that these kinds of stressors just wash over us until our cortisol output is sluggish.
I sat and did nothing for months. I did the bare minimum. I felt like crap but I was determined to get off or as low as possible. My adrenals took a long time to fully kick in and that was once off prednisone. It's 2 yrs now and I'd say just shy of that I still needed breaks and had to pace myself. Now I need breaks because I'm older lol.
Take time, settle in with a book or movie. Do the odd thing, no rush.
You could ask your rheumy to organise a Synacthen Test (SST) - that should tell if your adrenals are back in production or not. Endocrinology do the test. Ideally you need to be nearly off or off steroids, but they will test if 3.5mg or below. Worth a try!
A basal cortisol test is the recommended first stage and that can be done without a referral to an endocrinologist. A GP can just add 9am cortisol to the request for a fasting blood sample. That reduces the numbers for whom a synacthen test is necessary considerably.
This is interesting, I was told I needed a referral from an Endcrinologist.
My doctors surgery is in such a mess I feel disinclined to bother them unless it’s urgent. The furthest I got last time I asked was that my Rheumy consultant should sort that out 🤷♂️
You maybe do for the synacthen test. But the basal cortisol is a simple blood test that they can request along with the usual monitoring they should be doing.
A result of under 100 nmol/L is definitely adrenal insufficiency, of over 450 nmol/L is normal. If you are still on some pred, results inbetween show how much recovery is already there and whether it might be worth getting a synacthen test done now or whether just checking the basal cortisol level every few months to see if it is improving is more appropriate.
Thank you for the suggestion. I have asked him before and got told he ‘didn’t do the endocrine system, not my field’. Which I understood but a referral maybe would have been nice! Plus, you are prescribing these drugs why do you know so little about the effects on your patients?
Endocrinology itself is fiendishly complicated and I wouldn't expect other specialities to be particularly au fait with recovery. But I agree - some rheumies should know a LOT more!!!
One option is ask your GP for a referral to an endocrinologist (tho expect a long wait, they're rare creatues). They can run tests and also precribe hydrocortisone which you take instead of the steroids. Assuming of course the PMR has actually gone and now the problem is with the adrenals.
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