Predisolone side effects

[Sammyb246]

Hi guys

Was recommended this chat to talk about pred.

Diagnosed with lupus ( sle) currently been on 30mg predisolone as well as as a load of other meds since mid March. Really struggling with side effect. ( what I believe ti be side effects)

Anxiety ( badly)

Feeling spaced out/ as if things aren't real/ dream state

Bruising/ easily damages skin

Headaches

Tingling skin/ dry skin

Insomnia

Etc

Really struggling with the mental side. Does anyone one have advise about how they deal with it. Hoping not to have ti take more meds.

Spoke to rhumatoid helpline. They just said i need to be on it. And to push till my clinic appointment ( 4thmay) where they most likely start reducing.

Thank you for any thoughts and advise xxx

[DorsetLady PMRGCAuk volunteer]

Hi,

Many of the side effects you list are very common with Pred - unfortunately - especially on higher doses.

Many on this forum have PMR [Polymyalgia Rheumatica] so won't be on as high a dose as 30mg, but some have GCA [Giant Cell Arteritis] so will be, and higher.

Most side reduce as you a. reduce the Pred, and b. as your body acclimatises to the medication.

But on the mental side you really need to speak to your GP - there are therapies out there that can help - as well as medication - although I can understand you do not want to add in more - unless absolutely necessary.

Will just say that most on this forum are older than you [due to the nature of our illnesses] , so please post on the Lupus forum as well.

[PMRpro Ambassador]

Hi and welcome over here. Yes, they all sound like pred effects - and they WILL improve as you start to reduce the dose.

For the mental side it is worth talking to your GP because they may be able to help there. I don't know that talking therapies will help here but they might simply because they may help you to accept the bad bits of pred on the journey to getting better, but there are also medications that will help. Is the lupus diagnosis new? If so, counselling may help you come to terms with your life being turned upside down by such a dramatic change in your life. It ranks alongside bereavement there.

Does paracetamol help the headaches? It is an unusual side effect but unpleasant. Get some good emollient cream - many on the forum swear by Doublebase or Diprobase products and if you are lucky your GP may prescribe them but they aren't too expensive. And moisturise, moisturise, moisturise. Don't use soap or anything else that foams - it just makes things even more dry.

What bothers you most? Are you having any problems with weight gain? If so, cutting carbs drastically usually helps - especially processed carbs, added sugar and some fruits, berries are good, bananas and grapes not a good idea as they have loads of sugar in them.

If you ask us about specific things, someone will have been there with pred and may be able to help!

[SnazzyD]

Sorry that you’re having to go through this. Yes, it can feel rather rough. I started on 60mg for GCA and can say the side effects are dose related and should diminish. The mental stuff, I just kept telling myself it wasn’t me and stayed away from anything on tv or books that had any ups and downs in them. Couldn’t even cope with silly Rom coms that go a bit pear shaped in the middle but every viewer knows it’ll be ok in the end. Too stressful! Warn people that your fuse might be a bit short or you might gabble on and be weepy. I felt particularly bad about a couple of hours after taking the Pred while it was highest in my blood stream. It made be groggy and drunk and faded off over a few hours. I think that main thing is not overthink that you feel taken over. You have been but not forever. I existed on cat naps and stopped stressing about getting 8 hours a night. Normal life is difficult but hopefully it’ll get easier as the dose drops and you get more used to it. Low carb, low salt diet will help the raging hunger, bloating and fluid retention.

[micpenn222]

You are defiantly not alone with the mental side effects of Pred. I too experienced some pretty severe depression and anxiety along with the insomnia, and the feeling of depersonalization that you are experiencing. Along with the feelings of depersonalization I would feel very weird like I was on some sort of drug trip; at those times I would freak out the most! I remember asking this question once on a forum, and a person replied that they felt " wired and weird " at the same time, which I thought was a very apt description for what I was feeling, and still feel somewhat. There were, and still are other side effects also, but none of them came even close to bothering me the way the mental side effects did and still does. My doctor prescribed anti depressants and one I take at night ( mirtazapine ) is both an anti depressant and a sedative with which helps me sleep. If it's any consolation there are many in the same boat as us, and the side effects do alleviate somewhat on the lower doses.

At my current 6.5 mgs of pred that I take I am still not out of the woods yet, and still am experiencing some of the mental effects, but I can say they are reduced. My big problem now is the fatigue and loss of strength that comes with the lower doses until the adrenals gain their full function.

[Sammyb246]

Thank you so much for your replies. It makes me feel a bit better that it's not just me. It's just so scary and makes me feel as if something is seriously wrong. Have gp Monday and will chat to him