Side effects of Prednisone

[budgies4]

I started taking Prednisone in March 24 for Polymyalgia . Immediately pain free but have put on a bit of weight (not a problem) have been reducing Prednisone every 4 weeks (following Drs advice ) in last few weeks i have been losing pigmentation on back of hands and around neck. And now have started growing facial hair !!!! Has anyone else had these symptoms ?

[PMRpro Ambassador]

Hi and welcome!

I had a lovely black beard when I had about 8 months on methylprednisolone! I had fine facial fluff with higher doses of prednisolone and prednisone but nothing like the methypred. It did go when I was switched to prednisone as I needed a lower dose. I think I had some variable pigmentation so there were small areas that were paler and I stopped turning brown in the sun as I normally did.

If the weight gain does bother you, we recommend cutting carbs, especially processed carbs and added sugar. It has the double benefit of reducing the risk of developing steroid induced diabetes. And cutting processed foods also reduces your salt intake which is also beneficial when on pred in terms of fluid retention.

[budgies4 in reply to PMRpro]

Thank you for the reply. You were very brave with your Black beard 😂 I am being sensible with food but difficult when I’m offered chocolate !!! Interesting about the diabetes. My Dad was diagnosed when he was in his late 70s so I shall definitely take your advice on that . Thank you

[PMRpro Ambassador in reply to budgies4]

I have an epilator - made short work of the beard after the first few ouchy treatments and it doesn't leave any 5 o'clock shadow. Quite a few people have used them and these days they make ones for facial use.

[budgies4 in reply to PMRpro]

Thank you

[LindyMc in reply to budgies4]

If you want chocolate and I do regularly, to avoid a sugar spike, 2 squares or 1/5 of a of 100gramish bar of 70% + and eat with 2 Brazil nuts or similar weight of any whole nuts! I now prefer 85% with my nuts.

[budgies4 in reply to LindyMc]

I'll try that . Thank you

[Pr0jection in reply to budgies4]

If you can, stick to dark chocolate. I have the 85% dark chocolate from Lidl. I have a couple of squares each evening. It's also very rich in magnesium.

[budgies4 in reply to Pr0jection]

🤗👌 thank you

[SnazzyD]

Hello what dose are you on now?

The facial hair is a common side effect and will go as the dose reduces. I would advise not to be tempted to shave as you can end up battling with an ever threatening five o’clock shadow. I just grew my hair longer to side the sides. It isn’t uncommon for head hair loss to occur as a reaction to systemic illness and this can be delayed by months.

Vitiligo isn’t a common reaction to Pred but can be autoimmune.

mayoclinic.org/diseases-con...

It might also be fungal related due to being immunosupressed on higher doses of Pred.

healthline.com/health/tinea...

[budgies4 in reply to SnazzyD]

Thank you very much for your reply.

I just reduced to 9mg . I have short hair so will be very hard not to shave 🙈 but I will try x

[Countrykitten in reply to budgies4]

Take PMRpro's advice and get an epilator..I'm fair, so no black beard but a blonde one is not much better!! I love my epilator and pulling the hairs out by the roots does seem to weaken them. Good !uck.

[PMRpro Ambassador in reply to Countrykitten]

I have been white since my early 40s - but the facial hair was black, I looked as if my face was dirty!!! That first time with the epilator the change was SO dramatic!

[Swizzly in reply to budgies4]

I am surprised that you are already at 9 mg. I started with 20 mg in April 24 and am now at 15 mg Pred.

How does your taper plan looks like?

[budgies4 in reply to Swizzly]

I was started on 15mg for 4 weeks then 12 half mg for 4 weeks then 10mg and told to reduce by 1mg every 4 weeks ?

[DorsetLady PMRGCAuk volunteer in reply to budgies4]

That is in line with guidelines -except that below 10mg it does say -reduce by 1mg every 4 to 8 weeks depending on disease activity and patients wishes…

Some manage 1mg every 4 weeks, many don’t - so see how you go. And if in doubt, then stay at current dose a bit longer..

What it says in paper doesn’t take account of life and what it throws at us sometimes 😳

If you haven’t seen this, maybe have a look at it -

healthunlocked.com/pmrgcauk...

[budgies4 in reply to DorsetLady]

The Dr did say if I have any problems to go back to original dose . I do find the first few days of reducing I get bit of neck and shoulder pain . I have another review in August . I’m really glad I’ve joined this group. So much information 🤗

[PMRpro Ambassador in reply to budgies4]

Most people really don't need to go back to the original dose - a flare of symptoms usually means you have overshot the dose you need at the time. That's why you need a month at each new dose to be sure - if you have problem you just go straight back to the PREVIOUS dose, rather than the original dose. What you are experiencing though is just the body adjusting to the change in dose from what it was expecting. As long as the niggles improve over up to a week, it is fine. If it gets worse day by day - bo back quickly and that will avoid a real problem.

[budgies4 in reply to PMRpro]

I meant the Previous dose ! 🤗

[PMRpro Ambassador in reply to budgies4]

👍

[Swizzly in reply to budgies4]

Ok you started with 15 mg because of that.

I'll be happy when I've reached 10 mg 😊

Good luck 🍀

[budgies4 in reply to Swizzly]

Thank you and same to you xx

[Sharitone]

It should disappear again as you reduce your dose. I think mine went round about 15mg.In the meantime, I recommend a good pair of tweezers!

[budgies4 in reply to Sharitone]

Thank you 🙏

[Louisa1840]

I use an epilator as PMRPro suggests. I don't find it painful and it works well. PLEASE don't be tempted to shave!!!

[budgies4 in reply to Louisa1840]

Thank you. i will not be shaving

[Gioielli5]

I also started on Prednisone in March following a diagnosis of PMR. Started on 20mg and now on 9mg. Each time the dose is reduced I get pains in my shoulders for a couple of days usually accompanied by bad fatigue. I also have PBC (for past 16 years) which also causes fatigue and in most cases bad itching. I have never had ‘the itch’ which I put down to my vegetarian diet. I have been taking Ursodeoxycholic acid for all this time and when started it lost most of my body hair. Also have been dieting and exercising to combat putting on weight. Most days feel fine. I turn 70 on Wednesday so trying hard to keep on top of health issues. Hopefully as time continues will taper the steroid medication. The chances of having both autoimmune diseases are very rare. Theses sites are great for sharing experiences. Hope all goes well for you.

[budgies4 in reply to Gioielli5]

You've had a lot to contend with !! I'd never heard of PMR till i was diagnosed . Thought i was just getting old and would have to accept it . Hope all goes well with you too

[DorsetLady PMRGCAuk volunteer in reply to Gioielli5]

The chances of having both autoimmune diseases are very rare

Maybe for the two you have, but many on here have others as well as PMR

[Mumdadlove]

I had hair loss on my head but grew hair on my face and neck, face high up on my cheeks, chin well all over really lol, I use a facial hair removal cream, I’ve also grown hair on my arms and fingers I’m fair so it’s not too bad just annoying

I lost weight in the beginning but went on holiday and put on a stone in two weeks, since then gained another stone and now really hard to loose, so hit it while you can before it creeps on, good luck xx

[budgies4 in reply to Mumdadlove]

Wow . Poor you . I feel a bit of a fraud with all the replies i am getting with only a bit facial hair to worry about xx

[DorsetLady PMRGCAuk volunteer in reply to budgies4]

Never a fraud.. and as you can see it’s a problem for lots of people…

[Gioielli5 in reply to DorsetLady]

Absolutely. I calculated that having both is about 1 in 2000,000 but both are manageable at the moment. Many, many autoimmune diseases out there. Most affect women over 50.!

[DorsetLady PMRGCAuk volunteer in reply to Gioielli5]

Most affect women over 50.!

Aren’t we the lucky ones.. 😊.. but at least some slope off.., others aren’t so fortunate.

[Gioielli5 in reply to DorsetLady]

So true x

[Dinahmite]

Hello. I have put on over a stone since starting on Pred in November. I became ravenous! I've never put on weight before and have never been ravenous either. It has calmed down a bit now. I will be tapering to 8 on Sunday from 8.5. I weigh myself every few weeks, have drastically reduced carbs and sugar. I think it has been about quantity and when at a higher dose the Pred made me feel speedy, sleep deprived, and jittery, eating seemed to ground me. Good luck with your PMR journey. It's quite a ride!

[budgies4 in reply to Dinahmite]

it's amazing how hungry you feel when you first start, but not so bad now i'm on a lower dosage . I also felt very jittery and lightheaded in the mornings when i first started on Prednisone but that also seems to have gone now . Good luck to you as well xx

[Gioielli5 in reply to Dinahmite]

Yes same symptoms for me; particularly just after tapering to lower dose.

[Polygolfer]

Steroids are well known for their side effects, both visible and (even worse) the invisible and long term damage they can cause. That is why doctors always try to get people off them just as soon as possible!! Regrettably it’s a very individualised process so every one reacts differently and because of the risk of damage doctors try to accelerate reductions and more times than not it ends up being too quick and the result is a yo-yoing up and down which is even worse! I hope it all works out well for you, keeping active, stretching, reducing alcohol and other inflammatory foods worked well for me but we are all different and our PMR’s are all different as well!

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

we are all different and our PMR’s are all different as well

As so is our reaction to the steroids side effects, despite starting on 80mg and above 60mg for 2.5mg months at the begin of my GCA, I didn’t get many of the side side effects that people so often suffer, short or long term.

[Polygolfer in reply to DorsetLady]

Exactly what I said…. But, despite some people (perhaps like you and me) who may not have noticed any adverse side effects, what we don’t know is if there have been adverse side effects that we cannot see or feel at the moment! The slow tapering insights from the forum is most useful as it can help by preventing some people from going up and down with the steroids and then eventually getting stuck.

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

Well I would say almost 8 years after finishing Pred, I’m relatively okay. I’ve had 3 joints replaced -OA I hastened to add and undoubtedly there before GCA and familial. No sign of crumbling bones-all good.

Also have BP well controlled -another (familial) and present pre Pred days.

There may be something nasty lurking thanks to Pred -but there may be anyway, so no point worrying. Life’s too short..

[cmToddy]

Hi there. I had the peachy fuzz but just had derma blading. It’s a lovely treatment and my face felt soft afterwards. It all slows down as you decrease the dosage so at least it’s something that can be easily dealt with.

[Didgeydo]

Hi,Also had the same when on prednisolone put on a lot of weight,was on them for sometime,also had trouble sleeping.Thankfully am now free of them.Ask your GP for an alternative. Take care.

[DorsetLady PMRGCAuk volunteer in reply to Didgeydo]

An alternative for PMR? There isn’t one as such -Pred is the go to drug.

[pats000paints]

Hi,

I had a lovely white hair cape on my shoulders, ginger and black hairs on my face. Pigment? Well I don't have any really because my skin is pale.

Just shaved the lot off. It all disappeared as the dose dropped.

[offprenisone]

i have been on Prednisone for 12 yrs...same side effects as yours...trying to get off but its so hard. down to 2.5 mgs and too many side effects to comment on..now drs are (guessing) that they think its my fibermylia not my polymylia that is giving me my pain..this med is great for short time but a killer for long term.

[budgies4 in reply to offprenisone]

I’m sorry to hear what you’re going through .12 years is a long time 🙈xx

[Doublef]

my pred dose is up and down messed up by bad experience with methotrexate started at 60 now down to 12.5 but has taken nearly a year. Lost body hair not facial, I go back to my last dose if need be.

[PMRpro Ambassador in reply to Doublef]

60mg to 12.5 in a year is about par for the course - on the good side of usual I'd say.

[random901]

Hi. I had very dark hair so my sideburns from pred are noticeable. I use tweezers around my mouth and chin, but will invest in an epilator as many of you say it's not painful.

[PMRpro Ambassador in reply to random901]

I found mine caused more a prickly sensation than pain - but mine is a pretty original body one! They say the new ones for the face are more delicate (trying to think of the right words here!). Better done after a shower when my skin was still soft. But you need it less and less as time goes on, the growth does weaken.