Stopping steroids

[Advidkc]

Good morning everyone 🙂✌🏻

I am trying to stop steroids because i ve occasion ( my wedding) so I need to stop it , all my hair gone, stretch marks , fat build upin my face, acne, puffiness in my eyes, reduced weight 💔,

So i am going to stop it, anyways i ve reduced to 2.5 mg by my self since 2 week , if i am going to stop it , when my adrenal will work once again ? And i can eat enough calories that i can gain weight in my body not in my face 💔,

After stopping steroids do i need any test that i can know my adrenal i working or what should i do ??!

[123-go]

Hi. I'm so sorry that you are experiencing all these symptoms. The good news is that they will disappear eventually (not so sure about stretch marks although they may fade in time). The not so good news is that stopping Pred abruptly will make you very ill. You need Prednisolone to manage the inflammation in your body. If there is no correct management the inflammation will build up and you may well find yourself back to square one. You really do have to follow a slow and steady tapering plan to allow your adrenal glands to recover and produce their own cortisol. In the Topics section at the right of your screen you will find excellent advice on how to do this safely. I can understand that you want an improvement in your symptoms for your special day but the bottom line is that you will be setting yourself up for huge problems if you don't taper correctly and you will find yourself returning to higher doses of steroids if you ignore the advice. This is not scare mongering-it's the plain truth.

[SnazzyD]

What is your timescale? For me the Pred effects reduced with dose but didn’t all go until at least 6 months after I got to zero and this was spending about a year at 1mg or less. Unfortunately if you just stop Pred or reduce it very fast you’ll likely miss the wedding due to adrenal crisis or you’ll feel foul. It is very inadvisable to do this because you have no idea how quickly your adrenal glands will recover. You may well need extra adrenal support on the day because it may be long and emotional, just the sort of conditions that spark adrenal insufficiency, even if it is happy.

What you can do is go on to a very low carb diet right now. This is what makes the biggest difference. Soon after starting on 60mg I did this by cutting out pasta, potato, rice, maize, flours etc, as have many others and I didn’t put on weight. The Face happened regardless because what fat you do have will go there, round the back and tummy when on Pred, but if you are over weight, it’ll be ten times worse there. However, you appear to say you want to gain weight. If you have the Pred effect of spindly arms and legs, again that will take some time to change, so clever clothing choices may be your best bet if that’s an issue for you. Of course there’s makeup that can reduce the eye bags and shadows that some people get and the use of green concealer under foundation will help any broken veins and rosiness in the cheeks disappear.

[Maisie1958]

Hello Advidkc, I’m not sure if you have PMR/GCA as well as Nephroic Syndrome but you might get more advice on the National Kidney Foundation site for example? I’d be very wary of decreasing prednisolone without good medical advice or changing your diet too much. Have you had info from a dietitian? It’s very depressing when taking steroids alters our appearance although other people never seem to notice it as much as we think. I understand your wish to look the best you possibly can for your wedding but I’m sure your Fiancé and family would rather have you well enough to enjoy the day than battling adrenal insufficiency or your illness. As SnazzyD says there are ways to disguise what we perceive as flaws in our appearance. Wishing you the very best.

[SheffieldJane]

I really feel for you! It just makes you want to run and hide especially when an event with cameras looms. Of course you don’t look as awful as you think you do, but there’s no use telling us that. You are going to have to fake it until you make it. I wonder if your hairdresser can do something clever with a hairpiece? I have found Kevin Murphy volumising products to be very good for appearing to have more hair. Choose something flattering to wear and maybe get contouring advice at the cosmetics counter in a store, or on-line.As Snazzy has said, it takes time for our bodies to recover from long term steroid use. Even if you stopped today you wouldn’t notice an appreciable difference for months maybe. Please don’t ruin your health for nothing. You are already on an enviably low dose and you must give your adrenals a chance to recover. Stopping cold Turkey is really dangerous. Talk to your doctor about the desperation you are feeling. There maybe something they can prescribe for the skin troubles.

I have just re-read your post. It’s your wedding! Oh sweetheart ! I am sure your partner loves you for just who you are and thinks that you are beautiful. I would push the boat out with hair outfit and makeup advice. Congratulations! I hope you have the best day of your life! 💐

[Bcol]

Can only agree with everything already said.

[SusyTe]

I am sorry you are feeling so low. I really do think you need to talk to your doctor about this as stopping steroids abruptly can make you very ill, as others have said. From what I read about Nephrotic Syndrome (which I believe is what you have) one of the symptoms is puffiness around the eyes due to fluid retention, so that may not be caused by the Pred so much as your illness.One thing about hair loss - I went to Lucinda Ellery’s clinic when mine was bad and had a hairpiece fitted - it was wonderful and made me feel more like me again. Something to consider. It is pricey but for me it was worth it. My hair grew back as I got lower on the Pred.

Sending you a big virtual hug 🫂 x