Steroid withdrawal

Hi Sycamore5…. I was on buckets full of steroids over my years of treatment but was fortunate not to have any ‘left over’ issues….. but years of post treatment aches and pains is another story.

Kets see if anyone else is looking in that can help.

1. Hi sycamore5, I'm having my last dose of my 2nd cycle of ABVD today. I've been gradually reducing my steroids (down from 100mg at the start, to 5mg every other day) so that by next week I'll be steroid free (as per the advice from my oncologist). Haven't experienced any aches and pains yet, but some of my original symptoms have started to come back (feeling shivery, hypersensitive skin, nausea and generally felling unwell). Silly to say this, but actually looking forward to getting my next dose, as this seems to be helping, and I feel much better afterwards. Probably just need a 'top up" to fight this disease! Hope you find some answers from your consultant, and that you'll be pain free soon. Best wishes to you

So sorry you're having to experience this.

Steroids were a nightmare for me! I also felt like I was having withdrawal side effects. They really affected me mentally, and it took me at least a few months to feel like I could even think properly.

They didn't lower the dose gradually for me so it hit me really hard when I first came off them and I had to contact them saying I was feeling awful, so they did thankfully prescribe me some to lower the dose in a more controlled manner. This did help but still felt pretty bad when they all stopped. It did get better though over time and I hated them a lot so was glad to be off then in the end.

I'm sorry I don't have much advice but just wanted to share my experience to say that you're not alone in feeling that way.

Hopefully you can get some answers soon.

Hi thank you for getting in touch and hope you are well.  I have recently spoken to a doctor who believes the steroids may well have been masking something else hence the pain when I stopped.  At least I am now having further tests so will wait and see.

Oh no, that's a shame. Hopefully you get some test results soon!