Steroid withdrawal

Hi Belle,

I am sorry that you are going through this.

I didn’t have steroids other than the first few days so I don’t have any experience to offer but hopefully there will be others on the forum who can.

 I hope these symptoms improve soon and wonder if your team can advise.

Sending hugs x

Thank you for your reply and kind words, I will speak to my nurse but unfortunately with it being a bank holiday will have to wait until tomorrow. Hopefully things will look better soon.

Hi Belle ,

Likewise I don’t have any personal experience of this & can’t recall this cropping up on the forum at all but that’s not to say that there’s not someone out there that hasn’t had the same issue.

Have you gradually weaned down your dosage? as I believe like many other medications it’s not advisable to stop steroids abruptly. If you’ve weaned the dosage down prior to stopping altogether then maybe it’d be best to take some medical advice, hopefully your team will be able to offer a solution, sometimes the side effects from some medications can be as bad as the thing they’ve been prescribed for can’t they? 

I hope you get some relief soon. 

Nicola 

Hello Belle

I am sorry I can't offer any shared experience, I wasn't affected by coming off dexamethasone.  I hope by now you have been able to get some help clearing up your skin, you have my sympathy.  Out of the blue (I am three years out of treatment) I have developed rosacea with spotty skin and little pustules around my nose and mouth and I am not happy about how I look in my magnifying mirror!

It would be interesting to know if this is a side effect of treatment that has manifested itself early in you and later in me - I would like to know what your team say.

Spots on top of everything else...!

Irene xx

Thank you for writing this for me, I have left a message with my nurse for her to call me back, as it has been bank holiday, hoping she will be able to help me with my issues. I really appreciate your kind words. Hopefully I will be able to update what the nurse advised .

Thank you

I am waiting for a call from my nurse , I have left a message asking her to call me as it has been bank holiday. Hopefully I will be able to update you on what they advised soon. Thank you for responding and I do appreciate your kind words. 
Thank you

Hi Belle,

Just to say that I hope you get some help and advice today from your team. 
It sounds like you have had a really difficult time so everything crossed for you finding a way forward and relieving your symptoms. X