Predislone and side effects.

[Bobbury]

I've been on Pred as long as I can remember and now down to 10 mg and have been on 10mg for the last 4 months. I have suddenly developed straw hair . I don't have much but when I've washed my my hair I look like Ken Dodd, any suggestions? Also the efects of minor knocks on the skin are getting really bad. I use Nivea intense every day, not sure if that's the answer any suggestions please. Just one more, i've deveolped fuzzy hands. I've had all the tests blood & poo. Waiting to se the GB now. Is it related to Pred?

[Twopies]

I had to look up Ken Dodd, yikes! My hair, well, ok, sure, me and Ken. I can’t use most products, so I wash my hair in cleure shampoo, then use a small bit of cleure conditioner just on the ends; I don’t rub it into my scalp. My hair is dry, as my skin. At 4 1/2 mg my skin is thinner than ever, thank you, pred. I use Cetaphil. Just looked at my hands, they don’t appear fuzzy (yet!) although they’re bruised all over. Others will be along with lots of ideas for you, best wishes!

[Bobbury in reply to Twopies]

I know Ken Dodd shows my age but couldn't think of a suitable example! Anyways thanks for the suggestions

[PMRpro Ambassador in reply to Bobbury]

I used Crystal Tipps to describe mine

[Sophiestree in reply to PMRpro]

I can see her on that swing now!

[Sharitone in reply to Bobbury]

I say Worzel Gummidge for mine, but then that is also out of the ark.

[PMRpro Ambassador in reply to Sharitone]

But you can google all of them!!

[Sharitone in reply to PMRpro]

Maybe I'll change my profile picture!

Scarecrow

[PMRpro Ambassador in reply to Sharitone]

Love it!!!

[Bobbury in reply to Sharitone]

Yep that's me!!

[SnazzyD]

I called it my mad scientist phase which was just one of varying hair periods. I did find an anti frizz hair oil thinly applied when wet helped. Fuzzy hands, I don’t know if you mean hair there; I didn’t get that but had some decent sideburns. It does all get better, skin and all but it’ll probably need to you be well under 10mg. One day, one day….

[Bobbury in reply to SnazzyD]

The fuzzy hands are like having sandpaper on your fingers tips. It's constant, it doesn't go away. Some days are worse than others in the sense that the sandpaper effect is a more corse feeling. No pain though. Just makes you worry what's going on really!

[SnazzyD in reply to Bobbury]

It might be neuropathy. You could try searching the word in the box at the above and select “my communities” so you get replies this forum, assuming you aren’t a member of others.

[piglette]

I had my hair cut really short and people said it looked really funky. I had tried every hair stuff known to man. I would have thought being male it would be easier for you than for us females!

[Bobbury in reply to piglette]

Oh I wish it was!

[piglette in reply to Bobbury]

My brother goes for a number one cut, he has his own hair cutters.

[PMRpro Ambassador]

You need to identify the right moisturising shampoo. An antifrizz product will help a lot. And yes - I am only too aware of the pitfalls there!!!!

I grew mine out during lockdowns on Italy - more weight helps and the result gains me compliments all over the place. Locally in Germanic ItalyI am regularly compared to the Christkind of Nuremburg Christmas market! Not as regular curls and shining white rather than gold but I'll take it!!

christkindlesmarkt.de/en/ch...

[Grammy80 in reply to PMRpro]

I can just picture it~!!!! 'tis a lovely white!💞

[Grammy80]

Through my pred journey my hair has been dry, silky, very curly, thin, thick, wavy.....A living thing a-top my head with a mind of its own! I have as much control over my hair as I do my cat....I'm not the boss in either case.💞

[Pr0jection]

I'm on 7.5mg, have been for four years. At the beginning, when I was on 15mg, then 10mg, my hair felt rather thin but I've never had thick hair. I started a course of Biotin and after about 6 months my hairdresser remarked that I had new hair growing through. Quite a lot comes out when I wash it but my OH has a similar problem and he's not on pred. I'll continue with the Biotin though as it doesn't seem to cause any side effects and it may be helping. I also keep my hair fairly short and always use a conditioner and thickening mousse. Seems to work OK. Also, at 81, thinning hair may well be a natural process as I age.

[Sophiestree in reply to Pr0jection]

Make sure you stop the biotin a week before any bloods taken as they will skew your results. They do seem to help with hair and nails though.

[Pr0jection in reply to Sophiestree]

Many thanks for the reply. Do you know in what way they skew the results? I have been taking them for three years and have blood tests every two months which my rheumy always says are excellent. I would hate to think that it's not the case. Thank you.....

[Sophiestree in reply to Pr0jection]

I do have my underactive thyroid head on for this comment, but from what I understand it can affect Troponin (test to help diagnose heart attacks), Thyroid hormone tests (TSH , T4 an T3) , parathyroid hormone (PTH), cortisol, follicle -stimulating hormone (FSH) and luteinizing hormone (LH), Vitamin D levels, iron and others that I forget now. I think the main thing is to tell them you are taking biotin so that they can take that into account. It's a big no no for people with MS too. But having said all that, if you stop taking it a few days before you have your scheduled blood tests then it should be fine, and you can continue straight afterwards.

[Pr0jection in reply to Sophiestree]

Thanks for the info. I had half my thyroid gland removed in the 1960's due to a goitre.

[Sophiestree in reply to Pr0jection]

Oooh so maybe you definitely need to let them know.... they're pretty hot on biotin in the HealthUnlocked Thyroid group

[Ruthie64]

My hair has gone completely curly because of the steroids and I've learnt to embrace it. However it was very damaged due to colouring it regularly. I discovered a product called K18 (you can get it on Amazon). You wash your hair, do not condition but apply K18 for 4-5 mins, then apply your normal mousse or whatever and dry. Do this for 6 washes. Trust me it WORKS! My hair was transformed after the second wash! You're supposed to only use it for 6 washes then every 3 or 4 washes thereafter but I use it regularly now. It's expensive but worth every penny to me. I'm now growing out my colour and embracing my grey!! Oh and I do take collagen every day which helps too.

[PMRpro Ambassador in reply to Ruthie64]

How does it work on the grey? My hair hasn't had colour near it for 30 years - but is dry and frizzy underneath - the top hair is smoother and wavy. I hate heavy products though.

[Ruthie64 in reply to PMRpro]

Too early to tell with the grey tbh as I've only 2inches regrowth atm. But what's there isn't frizzy...The rest of my hair looks amazing now, my curls are great! It really was damaged and my curls weren't curling properly, just going frizzy. K18 is not heavy at all. I don't like heavy products either as my hair is fine.

[Bobbury in reply to Ruthie64]

Thanks Ruthie, I'll givee it a go!

[Ruthie64 in reply to Bobbury]

Just to add, no need to rinse it out in case that's not clear and a little goes a long way so it lasts for ages. Good luck!

[Whippetygirl]

I too used to look like Wurzle Gummage so I use plenty of hair conditioner rinse off and then dry with a hair dryer; then a tiny amount of coconut oil rub into my hands then over my hair and uses hair dryer again to smooth through hair, the difference is amazing . You only need the tiniest amount of coconut oil.

[Bobbury]

Sounds good!

[tangocharlie]

Same happened to me. Only thing that has helped is investing in some good hair straighteners, I went for Cloud9 as they have an auto-off feature. I look so much better. Depends how long your hair is. As for the hands, sorry don' know, but the same happened to me when I was on Leflunomide and it was put down to peripheral neuropathy. You might need to be tested for carpel tunnel etc

[Bobbury]

Thanks for that!