Prednisone

[Melaxx]

Is 20mg of prednisone an high dose? I’ve been on steroids for few months on and off , I fear I need a higher dose bc no improvement on the weakness of my muscles especially the leg muscles . I started to feel bloated, gain weight, eat more ( I can’t help it) . I hate this drugs , I’ll refuse to take it , if the specialist tells me I need to up the dose I’ll refuse, I don’t care I rather die , I’m as well premenopausal so the situation is even worst . My ck ( bloods) seems not to go down , I’m sure they’ll push me to up the dose or doing intravenous course of steroids. After so mane years of worrying about this terrible disease finally caught me and I feel to let it win. I know my life will be as a disable eventually and I’m not prepared to it . I’m on my own and I don’t want to be a burden on the system.

Thank you 😊

[PMRpro]

20mg is a top end of moderate dose really and a common starting dose for muscle inflammation but usually you need to use it steadily, yoyoing the dose, stopping and starting, just doesn't work. Using pred well may well be the diffence between being disabled or not so it can be a life saver and isn't half as bad as it is made out to be.

Pred isn't that bad when it is used carefully and most of its adverse effects can be managed when you know how. The weight gain is what most people find worst - and you can help reduce that risk by cutting carbs drastically - all processed carbs (bread, cake sweets etc) and especially sugar. That also helps reduce the inflamamtion and often that makes the pred work better too. It also cuts the hunger and cravings because it reduces the swings of blood sugar that causes them.

I do know what I'm talking about - it is the only option for the a/i disorder I have and I've been on pred for well over 10 years. I have lost the weight I gained and the moon face and the fat around my middle - all by cutting carbs. It isn't easy at first but after a few weeks it becomes easier.

But do ask for help - being stubborn with your doctors and refusing what they are offering won't help them to help you.

[My_get_better]

I’ve been on Prednisone for 21 years from the day my dr told me that I have Lupus. What is that? I’ve never heard of this I asked. He said every body human being has a bomb hides inside your body but we never know when or how it will expose. I was 19 at that time. Not to young and not too old but do something like a teenager supposed to do at least. So my dr has been playing around with my steroids, sometimes blood work looks ok he taping it down to maximum every 2-3mg for 6 months. I was in the H while my Lupus was flared up and very serious, I used to be on max of 40mg so you can imagine I was literally pushing my I.V. hanger to the bathroom and ever since I didn’t want to leave the toilet, bc when every time I wanna pulled my pants up I felt like I had to go again🤬and I’m still on 10mg. For what I have going through with Lupus. Prednisone is one of the most nastiest drug, it could kill you but it can kill us too, we can not live without it. All depends on your dr how well he can manage your doses.

Don’t worry too much, once the steroids goes down, you will go back to your regular weight don’t worry too much.

Hope you feel better 😇 I live in Canada, crazy cold 🥶 today and all the joints in my body started fighting and come down with the stupid cold 🤖. Take care!

[Dibage]

Hi Melaxx it's so sad what the side effects of this drug do to our body.With me my Physician topped it up to 80mg but eventually taper it to 10mg daily.At the moment I stopped taking as prescribed only taking as I please.I gained a lot of weight from size 34 to 40

[Paul_Howard Partner LUPUS UK]

Hi Melaxx ,

I'm sorry to hear that you have been struggling with the steroids. 20mg wouldn't be considered a low dose and therefore wouldn't be continued over the long-term. Higher doses are sometimes used over the short-term when they are struggling to get a flare under control.

Are you due to see your consultant soon? It is worthwhile discussing the side effects you have been struggling with. I don't know whether receiving intravenous steroids may come with fewer side effects? It is important to bear in mind that it can be dangerous to stop steroids suddenly, so if you were to decide to reduce them, please ensure you do so under your doctor's careful supervision.

Are you currently taking any other medications for your lupus?

A diagnosis of lupus does not necessarily mean that you will eventually be disabled. Treatment has improved significantly over the decades and most people are able to manage relatively well now once they have found a medication regimen that suits them.

You are not a burden. I'd encourage you to reach out and talk to someone about your low mood please. Have you discussed this with your GP or perhaps your specialist nurse (if you have one)? They may be able to offer some additional support.

If you'd like to chat to someone else with lupus on the phone for support we have a network of trained volunteer contacts. If you'd like to speak to someone in this way, please just let me know and I can give you some more information.