Supplements

[Abbey17]

What is the best supplement to take when on Prednisolone? I’m thinking particularly about poor hair and energy levels. Currently taking vit C and a hair and skin supplement but would love to hear what works for others. Energy levels are half what they used to be (I know we all suffer with the withdrawal fatigue) and long glossy hair is now like scarecrow.

[SnazzyD]

You may be suffering from poor adrenal function because your steroid dose will not be covering your daily needs once below about 7/8mg. Hair and energy levels are very affected. Once below 5mg it is ok to do a Synacthen test to see if your adrenal glands are capable of working. During this ropey period my hair mostly fell out and didn’t get better until my adrenal function came back on line which I could tell was happening because I started to feel better. Until this happens I don’t think pills and potions will do much. My Synacthen test at 4mg said my adrenal function was so so but a repeat around 1mg was much much better.

[Abbey17 in reply to SnazzyD]

That’s really helpful thank you - I’m on 5 and doing a slow taper to 4.5 I’ll speak to my GP 💜

[SnazzyD in reply to Abbey17]

The test will tell you if the adrenal glands are responding adequately to a stimulus as if the pituitary gland is shouting at them. The rest of the cortisol making process starting in the brain may not be up to scratch but at least you know if the glands can work given the right messages. Even if you get an ok result it doesn’t mean the messages will come from the brain correctly every time, that can take a while. If nothing else it gets you under the eye of an endocrinologist.

[Abbey17 in reply to SnazzyD]

Thanks so much

[powerwalk in reply to SnazzyD]

If your adrenals are not working does that mean you will never feel any better? Even taking the pred that is meant to deal with it. Is this it??? Obviously just wondering for myself. Sorry Snazzy if thats too broad a question.

[SnazzyD in reply to powerwalk]

If your adrenals aren’t working and you are taking less artificial steroid than the amount you need in the day, yes you feel rubbish. Above 10mg your body switches off the natural steroid producing process because it is getting more than enough from the Pred. When your dose drops somewhere below 10mg your adrenal glands really need to work to make up the difference. Cortisol is essential to live and if you don’t have enough and depending on the level of deficit, you can feel a bit tired, right through to it being life threatening due to an adrenal crisis. The idea of reducing really slowly is to challenge the natural cortisol production to work but without getting a crisis. If you stay happily on 10mg feeling great, the adrenal glands never get challenged and will stay asleep, you then run the risk of long term Pred problems, though it seems on here it depends on the person. The Pred isn’t being taken to deal with your adrenal function, it is there to stop the inflammation of PMR. It can come as quite a disappointment to get to a low dose expecting to feel great because your Pred side-effects are going fast and the PMR feels better. Suddenly you can feel tired, emotional, achey and empty with dry skin and hair. It varies between people. I felt absolutely rotten from 7mg to about 5mg when it I started getting good days as long as I didn’t do too much or have too much stress. This all took months and was a necessary part of recovery. By the time I got to 3mg I felt so much better. I took a year to go from 1mg to zero. Going at the right speed for you is very important.

So no, this probably isn’t “it”, but the start of another path to recovery that perhaps wasn’t ‘advertised’. I do wonder if it this phase that some doctors call “addiction” to Pred, somewhat unfairly.

[powerwalk in reply to SnazzyD]

Ive been told mine are unlikely to come back after synachten test. Feel rotten. On 5mg. Thank you. Addicted ... wouldnt mind if i felt even half human.

[Kendrew]

Agree with Snazzy. Also feel that steroids played havoc with my skin, hair and nails ...almost from the get go. However I've tried to avoid taking lots of supplements since a friend, who's a dietician and nutritionist, told me that wherever possible, it's much better to get good nutrition directly from food sources. I do however take Vit.D3 and Calcium on prescription as I have osteoporosis. My diet is full of vegetables, some fruits, low (but not'no') carbs, some dairy, plenty of protein, seeds, nuts, etc..... and all making sure I have a rainbow of colours.

Each person will have their own individual requirements and may feel there is an odd supplement that will benefit them, particularly if malabsorption is a problem, but generally, I would suggest a healthy diet is the best way.

You sometimes have to be careful that a supplement doesn't affect the absorption of steroids or any other medication you may be on also.

[Abbey17 in reply to Kendrew]

Thanks - I didn’t even think about supplements affecting steroid absorption! That’s really helpful

[PMRpro Ambassador]

The only supplement I take is vit D - I consider most of the rest are just putting money in the manufacturers bank accounts/profits! Especially vit C which should be covered in a good colourful diet and any excess is pee'd straight down the drain, literally!

Poor hair can also be due to the underlying autoimmune illness. And be careful - too much of some supplements is worse than not enough. It will go back to normal eventually.

And what a really good set of posts from Snazzy - everyone should have a read...

[piglette]

I tried everything you can imagine on my shoulder length, dry haystack. In the end I had it cut very short and it just stuck out and looked really funky. As PMRPro says don’t boost up the coffers of the supplement suppliers. They reckon around 96% of supplements just make money for the supplier. If your doctor recommends them that is different.