New comer

[Hollyparker2]

I just joined this group. I was diagnosed with systemic lupus a few months ago. I also have an underactive thyroid, raynauds and ITP. I'm on 50mg of prednistolone and my face has really swollen. Does anyone know how long it takes to go down once I come off them? Thanks

[debbiemoll]

Dear Holly

In my own experience, the face going down is related to how long I was on high doses of steroid and also the amount it goes down relates to the amount of steroid I was on.

So last year I was on 40 mg for 4 months - then it has been almost a year to wean down to 10 mg because of pain etc - my face has come down a lot but still now has a bit of a puff to it... I am going to try and spend the next 4 months coming off them- i am now doing no dairy and no gluten/wheat which has helped me lower my pain level.

I have lupus, APS and Sjorgens.

Good luck Holly,

Debbiemoll

[lupie46]

After a long spell on prednisolone, it took about twelve months. Don't despair, it will be ok. Prednisolone is life saving and stops permanent organ damage. ☺

[Tiras]

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Hi Hollyparker2;

Welcome to our family! You will get nothing but good advice from this group. Sometimes we make and read post that will makes us cry. Then there are times we will make and read post, you will have tears in your eyes from laughing!

I am on Prednisone, and have been for over 4 years. Now I am on 5mg a day. However, even on low dosage, I can't answer your question because I still will swell at times, especially hands and feet?

I know this did not help much, but, this is just to let you know you are not alone and have support!

Wishing you and your family the best!

👣👣👣👣👣Tiras👣👣👣👣👣