Taking Pantethine

[Suffolklady]

Does anyone take Pantethine to support the adrenal glands as you reduce? I read somewhere it's a good supplement, but what's good for one isn't for another. Just wondered if anyone does and do you think it works with helping with the tiredness?

[SnazzyD]

Hello, I’ve not taken it but I thought it was supposed to lower cholesterol not support the adrenals? When you say support do you mean adding something in to make up for what the adrenal system isn’t producing or trying to trigger some activity in a specific part of the adrenal system that has three main parts? I’ve not yet researched any of this.

[nevagivup]

Hi, I think you mean pantothentic acid. It is supposed to give you more energy, but I read elsewhere that trying to boost the adrenals artificially with supplements is not a good idea, especially liqorice and its derivatives. The adrenals need to recover from corticosteroids naturally, as your dose goes down, the adrenals produce a little more cortisol. Hence the need to taper DNS. Tiredness is part and parcel of PMR and corticosteroids. We have all been there or are still tired. Hang in there, Suffolk lady.

[Suffolklady in reply to nevagivup]

Hi there nevagivup, Pantethine provides much more powerful support for adrenal function than does pantothenic acid, more quickly restoring adrenal hormone production and normal biochemical function in the adrenal glands. Yes it does other things as well lower cholesterol, which isn’t a bad thing for me either. Yes total agree it’s best for the adrenal gland to take control by its self but think mine was always dead as my energy levels even pre PMR were non existent. This just adds to the misery of lowering preds I just think any leg up to get me feeling better can’t be bad. Maybe I’m wrong. Thanks for your support much appreciated

[piglette]

I have been very careful about taking any supplement since using steroids unless prescribed by my doctor. The trouble is they all seem wonderful in the adverts but you do not know how they may react with other things particularly if you have an illness.

[Suffolklady in reply to piglette]

I only heard about this supplement from a blog of other people’s experiences with the same condition as they had positive results and felt less tiredI thought I’d give it a try. I didn’t pluck it from adverts as I never even heard of it. You are right of course but a lot of doctors are not interested in how you are feeling, well mine anyway, only that the steroids are helping with the symptoms.

[GOOD_GRIEF]

Personally, I now consult my doctors and pharmacist before I pop anything remotely resemblling medications or supplements, and even request information about food and liquid interactions.

Some things are useless. Others are harmless. Others are lethal.

I figure I'm already conducting a barely controlled set of biochemical experiments in my body. I want a pretty good prediction from someone pretty well educated in the science of how it's all going to mesh before I add or subtract anything.

[PMRpro Ambassador]

There are no supplements that have been shown in real clinical tests to "support" adrenal function. All they support is the bank account of the person selling them...

sciencebasedmedicine.org/ad...

ncbi.nlm.nih.gov/pmc/articl...

Pantethine has been looked at in animal and human studies - but perhaps not with the result you want:

" ...administration of pantethine (active vitamin B5) in several experimental animal models appeared to enhance adrenal cortex function. Administration of pantethine to humans with a variety of clinical conditions buffered the increase in urinary cortisol metabolites expected to occur secondary to a loading dose of ACTH, suggesting pantethine can downregulate hypersecretion of cortisol secondary to high-stress conditions"

i.e. in humans it reduces the amount of cortisol when the body is under stress.

[Suffolklady]

Thanks for all your imput it’s very interesting to find out your views. I don’t have a rheumatologist to consult only a GP who doesn’t advise me much on steroids so this group is a godsend.

[HeronNS in reply to Suffolklady]

I have been "tired" for the last two and a bit years, since I got to 7 mg pred. But the "deathly fatigue" only hits me now when I've overdone it, and I do recover quickly if I just stop and do nothing more arduous than read or play on my laptop! I think rest and a generally good diet is the best thing we can do for our adrenal glands.

[Mrs-CJ]

I have been having increased fatigue since I reduced from 3 to 2 3/4, and extreme fatigue for the last 6 months as I tried several times to reduce to 2 1/2. My PMR aches are just fine with the lower doses but the fatigue is keeping me home on the couch.

I too had fatigue issues prior to the horrible muscle aches appearing that eventually led to my PMR diagnosis. I’m wondering if I had adrenal issues before, then the PMR appeared so when on the higher doses of prednisone I didn’t have any relief from the fatigue, and now the PMR is going into remission but I still have fatigue because the pred is too low for my adrenals

Anyway, I recently saw my GP and asked for a referral to a specialist to have a ACTH Synecthen test to check out my adrenals and related glands. Of course there is a wait to see a specialist......and in the meantime I have increased my prednisone to about 3 1/2. I don’t want to experiment with higher doses in case it would impact the test even more.....I’ve read a lot about the test but haven’t come across anything that specifically mentions how to take it if you are on prednisone.

Question........

I always use the DSNS reduction plan. Does anyone have any other tips for helping adrenals to “wake up”?

Thanks!

[Suffolklady in reply to Mrs-CJ]

What is the DSNS reduction plan?

[Suffolklady in reply to Suffolklady]

I hope you get some answers and that you can get your fatigue under control Mrs Cj who knows what going on inside us but it sure is miserable being tired all the time perhaps the test will show something up.

[PMRpro Ambassador in reply to Suffolklady]

The Dead Slow and Nearly Stop approach to reduction:

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Mrs-CJ]

Not really - slow, slow, slow will mostly achieve it IF your adrenal glands are CAPABLE of producing cortisol. Unless another part of the complex production process is failling which is always a possibility. To find that out that your GP is doing the right thing by requesting a synacthen or ACTH stimulation test which shows if your adrenal glands can do so - but there is no reason I know of for him not to seek the test BEFORE you see the endo or you may have a long wait in this state. If you can't function it is a bit pointless - the low dose obviously isn't enough to allow that. And if it is poor adrenal function you ARE at risk of becoming ill as a result, especially if you are under severe stress at any point (illness or injury for example).

You don't take pred in the 24 hours prior to the test and the injection should still trigger an increase in the amount of cortisol produced, not the same amount as if you weren't on pred at all but still more than baseline. It would be a bit irresponsible to stop the pred entirely - if your adrenals aren't producing enough you could become quite ill as a result of secondary Addisons.

A retrospective study on fatigue as a precursor to PMR diagnosis has been done:

tandfonline.com/doi/full/10...

and although there have been suggestions in the past that poor adrenal function may be an underlying cause - there is no real evidence that it is a major cause. Of course, the approximately 5% of PMR patients who are said to need pred for life may well be cases where adrenal function plays a role. The presence of fatigue before the muscle aches is probably the early stages - although a lot of doctors insist PMR appears overnight that is by no means always the case. It can creep up on you too.

[Suffolklady in reply to PMRpro]

Thank you so much for posting that I have never heard of it before but it makes total sense and Its very informative. I’m definitely going to give it a go as I’m on the critical stage of 6/7 mg Pred and been there before and had to go up to 10 again. Think my poor husband who does my pills for me will be scratching his head so I’m going to print it out for him. It will keep him out of trouble though. Many thanks

[PMRpro Ambassador in reply to Suffolklady]

There is an app somewhere but don't ask me about that! I do it the old fashioned way: calendar and coloured markers, one to mark the days for the new dose, the other for the old dose. Then I mark the first of the month as a new dose day, count the number of days at the old dose, one day new dose, etc etc. There is always one day less of the old dose between new dose days going down, one day extra of new dose days going up.