I’m sorry to hear that. As someone who’s been on prednisolone since 2008 without pause, I truly hope IVIg is available for you (it wasn’t suitable for me). I have a whole bunch of rare incurable illnesses, if you need a stranger to talk to feel free to message me. It can be a lonely journey, I’m happy to help if I can.
I was 21 when I was diagnosed, symptoms started at 18. I was told I’d never be able to work, that I’d never have children, and I’d be lucky to see 30. I went to an irl support group and had to sit through a 55 year old woman sobbing because she needed to take early retirement and she really liked her job. At the time it felt so utterly minuscule compared to the loss I was grieving it just made me angry. I was angry a lot when I was younger. I’m 37 now so I beat the odds and I’ve learnt to live with the unfairness of it - and to accept that people like that 55 year old woman are perfectly entitled to grieve for their loss. Suffering is subjective, and if that’s the worst thing that ever happened to that woman, it’s terrible for her.
RE the pain… MEDICAL CANNABIS. I’m in the UK and it’s only recently been made legal for medical purposes. You can’t get it on the NHS though, I have to pay privately and without a job that’s really hard. But it’s worth the sacrifice - my life has improved dramatically in the year I’ve been taking it. I was on a huge dose of gabapentin (sister drug to lyrica) 600mg at 8am, 12pm, 4pm and 900mg at 8pm. Plus NSAIDs, immune modulating drugs, benzodiazepines, amitriptyline, and 3 different opioids. I’ve reduced those drugs by about a third since I started medical cannabis and my pain is better than I can ever remember.
Hope the lumbar puncture goes well - it’s not as bad as it sounds, promise! The bit of back pain you can get afterward is just like period cramps - a hot water bottle will help 🙂