Withdrawal vs Secondary Adrenal Insufficiency

[nuigini]

I was going to place this as a reply to Meeran Protocol Post early today but decided to start an new topic.

Thanks for the informative articles though.

I've been struggling for months trying to determine if I’ve been suffering from steroid withdrawal or adrenal insufficiency. I read the posts daily and am amazed at how many are currently struggling with the same question or related issues.

I haven't replied because my situation seems to be overcomplicated for many reasons, not the least of which I believe to be the absorption rate of prednisone. It took 40 mg of prednisone to ease the initial symptoms of PMR and I had to start the DSNS reduction plan at 17 mg, dropping .5 mg at a time. This slow reduction began several years ago (coming up to 10 years with PMR).

I simply cannot get below 13 mg and have reached the 13 mg plateau several times. I'm wrestling once again. Many of the symptoms have been typical of secondary adrenal insufficiency, but also of a flare (fatigue, weakness, nausea, and diarrhea). CRP has been increasing over the last 5 months from 16.2 to 29.6. CRP beyond 10 has always been an indication of a flare fin the past. However, I haven’t had the usual flare symptoms in my neck, upper arms and upper back. Deathly fatigue, depression, foggy brain, and weak, heavy legs have been the main problem. The leg problems are always an issue, regardless of the prednisone intake. I've been holding at 13 mg for three weeks after doing a DSNS from 13.5. Looking back at my notes I struggled though those 8 weeks of reduction.

My husband and I recently completed a lengthy road trip, which was very enjoyable. I did a lot of walking on some days and paid the price of DOMS (delayed onset muscle soreness) however, no deathly fatigue, depression, or foggy brain. After 4 days of relaxing, I hit a wall of pain everywhere, like a bad flu, and ended up in tears after a short walk.

I was going to ask for advice here, but simply couldn’t put the words together or wait for replies. I took an extra 5 mg. Things improved least a 50% improvement by day 2, day 3 today and it’s 70%. So, here I’ll stay for 7 to 10 days before facing the dilemma once again of future reduction.

Some will say I was foolish not to realize it was a flare much earlier and they'd be right. I’m just so fed up with the merry-go-round. And perhaps of base in my thinking.

Back to the bioavailability issue. I recently came upon this paper…

PredniSONE: Dosage, Mechanism/Onset of Action, Half-Life - Medicine.com

Very early on, under the subject absorption it states: “50% to 90% (may be altered in hepatic failure, chronic renal failure, inflammatory bowel disease, hyperthyroidism, and in the elderly) (Frey 1990)”

This would mean at 13 mg I could only be absorbing 6.75 mg. By persevering to reach 13 mg and beyond I consistently end up in a flare and the ride begins all over again. There may be so many others struggling to reduce who have absorption issues.

Sadly, it appears this question and impact of prednisone absorption rate has been lost to research since Frey 1990.

When I do begin to reduce once again it will be at ¼ mg at a snail’s pace.

This is a bit of a rant, and a unique perspective, but I thought it was worth sharing,

Comments welcomed.

Thanks for listening.

[piglette]

I am not sure I would blame adrenal insuffuciency for your symptoms if you are on 13mg of steroids. Have you talked to a doctor to make you think that?

[nuigini in reply to piglette]

Yes piglette, my GP is as confused as I am. This time it is a flare of PMR.

Did you read about the impact the absorption rate may be having?? I may only be absorbing 6.5 mg.

There are all sorts of tests that could be made to help determine what issues may be affecting the inabilityto get below 13. Unfortunately, in Alberta Canada they can only be ordered by a rheumatologist or endocrinologist. I'm on a wait list for both.

[HeronNS in reply to nuigini]

Absorption could be the problem. I've long thought that I absorb pred exceptionally well which is why I had relatively little difficulty tapering to a low dose, but have now been stuck for nearly as long as you have been! (Definite symptoms 2014, diagnosis and pred 2015.) Ability to absorb pred may help with taper but it doesn't seem to mean earlier remission!

Hopefully you've been investigated for other possible causes of the symptoms? This page has a good section on differential diagnosis, scroll down quite far, maybe a bit more than a third of the way.

uptodate.com/contents/clini...

[Mstiles in reply to HeronNS]

I may be not doing this correctly but this site wouldn’t let me see the symptoms of the other possible diseases unless you were a member.

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

Should be able to….I’ve always been able to access okay.

[HeronNS in reply to Mstiles]

I've always been able to access uptodate and have referred to it quite often. Try using a different device or a different browser?

[nuigini in reply to HeronNS]

Heron, they did a complete differential diagnosis before beginning treatment.for PMR. Current GP still runs some of them off and on.

[HeronNS in reply to nuigini]

Excellent. I think that's more than I got, but don't remember, if I ever knew, what tests were run at my start, so don't really know. It's only been since PMR that I've even had regular bloodwork, other than whatever they do during pregnancy. I think current doctor checks a lot more things, but I'm now quite a bit older and appear to be falling to pieces so perhaps that's why!

[nuigini in reply to HeronNS]

I can relate to the "falling to pieces part" Heron, which makes the PMR puzzle even more complicated.

About differential diagnosis...when I was diagnosed with celiac disease my GP commented that it should be part of the differential diagnosis for PMR! It has many identical symptoms. I suspect celiac disease came to me long before PMR as the first autoimmune disease.

[piglette in reply to nuigini]

I read your post and that you said you could have a low absorption, but you did not say that had been confirmed. I would have thought the vast majority of people would not fall into the adrenal insufficiency category at 13mg.

[PMRpro Ambassador in reply to piglette]

But they would if the 50% absorption mentioned in the paper applies and the old 7mg threshold has more about it than some doctors think. We know that a lot of people start to feel apparent low steroid effects at 10mg and even above, I suspect there is a lot more to it than meets the eye.

[piglette in reply to PMRpro]

I agree, but drug companies do try and ensure their products are reasonably effective although a lot of people may disagree.

[PMRpro Ambassador]

Those are the figures I have quoted repeatedly in the past - some of us just don't absorb all the pred we take but no-one ever measures it. It doesn't matter because the dose is titrated to the right dose for each of us - until the doctors get their "Pred aversion" hat out. The whole thing is far more comlex that they give it credit for,

[darkred]

Thank you for telling us of your experience. Most of all, I learned we may be absorbing prednisone at different rates. Food for thought!

[PMRCanada]

It can all be so confusing and complex (and frustrating). I was interested in bioavailability a few months into my PMR/pred journey as my morning dose just wasn’t providing relief the full 24 hours, and I was waking up stiff/sore each morning. Splitting my dose helped.

I do hope you find answers to you questions and the dilemma presented regarding being stuck at 13mg pred. Your situation (as well as others’) seems to demonstrate just how individual we are in our body’s response to PMR and pred.

[Sueloucam]

Your post was extremely interesting. It is very clear that we all have different reactions to the steroids. You described your flare up exactly as mine happened a few weeks ago after stopping my steroids (4yrs), so took a 5mg dose to instant relief. My Rheumatologist is suggesting it’s steroids withdrawal symptoms but I know how I feel. Best of luck, keep trying. It’s good to write/share your experience .

[Linny3]

So sorry to hear how much trouble you are having. I am in my 7 th year with pmr and have an awful time reducing prednisone. I have known for years that any given dosage does not last 24 hours for me. The reduction I am doing now has taken 7 months to go from 25mg to 11 mg with one flare. I take part of a dose between 1pm and 3 pm. Then I take part dose late evening and the rest of the dose in the middle of the night. So far this has been my best reduction. Because of the stress of the holidays, I will stay at 11 mg for 2 weeks and then start another 1/2 mg. reduction. I am so sensitive to a reduction, I reduce by 1/4 to 1/2 mg.

Thanks for sharing your findings. Good luck with your reduction and have a great (pain free) holiday😀🎄

[Gustie88]

On that dose of pred your adrenals have likely totally shut down. Remember the adrenals produce many other hormones other than just cortisol. Test if you can some other hormones like DHEA and pregnenolone. Possibly add small doses of those hormones and see how you feel. Without those other hormones to balance things, inflammation may be increased. There is even some speculation out there that high doses of cortisol may lead to increased inflammation via up-regulation of certain enzymes and receptors. Hope you feel better. Good luck.

[PMRpro Ambassador in reply to Gustie88]

Pred doesn't shut the adrenals down entirely - it is mainly the cortisol production that is reduced via the pituitary feedback registering there is plenty of corticosteroid present in the body.

[Gustie88 in reply to PMRpro]

Prednisone, especially higher doses or even low doses over an extended time frame, will most definitely shut down the adrenals (in many patients) via the cessation of ACTH due to the negative feedback loop.

[herdysheep]

The struggle to work out flare/ withdrawal/ adrenals seems to increase for those of us who are 'long term'. Ironic when you think of the longer time we have had to get to know our bodies. As ever pmr has it's own mind.

I tend to leave it longer hoping it is withdrawal on reducing and that sometimes means a flare has more of a hold. There is inevitable reluctance to increase the dose, especially when down into adrenal territory as well as the mental health aspect of feeling as though you are going backwards. Add in any other health issue, to say nothing of stress, and the mind jumps in with not bothering to operate properly.

I am more cautious then ever after the last flare and will not start to reduce again until 3 months on this dose. I need to be more free from pain in shoulders which is a mix of pmr and other things but neither tells you which is which!!

I can't offer any positive advice other than to say - that's largely why we are all here. We get it. One day we will know what to do at the right time - we hope!