Help and advise please

[Ianrussell69]

Hello everyone I’m not posting for me today it’s my daughters birthday (19)tomorrow and she had her long overdue rumi app yesterday and she got a diagnosis so any info on ascending spondylitis (a s)would be great what a birthday present today she’s in a lot of pain in her back and arms so I now think autoimmune diseases run in my family thanks

[Ianrussell69]

Sorry it’s Ankylosing spondylitis my bad I blame the pain Meds for the typo sorry for any confusion

[Hidden in reply to Ianrussell69]

If you've not joined nass then take a look at their website particularly the ASOne part which is aimed at young people diagnosed with AS. They also have their annual meet up next month which you may still be able to get tickets to, it's in Surrey I think this year.

[Fredabooboo in reply to Ianrussell69]

Good morning ..I'm sorry to hear of your daughters diagnosis..I myself don't have this condition but suffer with spinal degeneration desease..mine won't fuse together as your daughters might..I think though I would advise the more movement she can do the better..ask for non steroid anti inflammatory medication..also corticosteroid injections.these do work but you can not get them constantly because the NHS won't fund them..crazy.im due some in 6 weeks..can have them as not had them for a year !!! Warm baths if she can get in one ..swimming and walking in the water..if she's sitting warm pads on back..I can' walk on land haha but water yes absolutely..it hurts so much..but I'm 54..bless her heart so young for this poop.ive joined a health club for the flat swimming pool..van you give her a hug and say happy birthday from me ..and if you need someone to chat to I'm here 😊Lou x

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[Ianrussell69 in reply to Fredabooboo]

Thank you

[Ianrussell69 in reply to Fredabooboo]

Hi I was wondering what pain Meds you are on and if they work as at the moment my daughter is on celecoxib codeine paracetamol and none of these has little to no effect the dr at rumi has told us to get over dr to prescribe arcoxia as the hospital dose not prescribe it due to the cost🤯hope this sorts the pain as it’s getting her down now and stopping her work thanks again for your reply

[Fredabooboo in reply to Ianrussell69]

Hi..I'm on 12 hr release morphene and methotrexate injections once a week..I'm going for corticosteroid injections into my back in six weeks time..I've had them before and they really do work..only trouble is that you can't get them as a constant because it's to expensive..madness ..I'm also on pregabalin which is for pain ..I think she needs some kind of anti inflammatory medication..but honestly keep her moving even when she doesn't want to..I hope this helps and give her my love x

[Ianrussell69 in reply to Fredabooboo]

Thanks they have prescribed the most powerful anflammatory they can she will start it on Wednesday if that dose not work sufficiently then she will be put on bio Meds which are like methatrexate but apparently stronger don’t know how I feel about that as I’m on hydroxy and methatrexate injections and have had problems with it just started back on methatrexate after 8mth break due to one nasty infection thanks again

[Hidden in reply to Ianrussell69]

I'm about to start anti tnf treatment but my t spot came back positive so got 3 months of antibiotics first. I hadn't even failed different anti inflammatory or dmards my rheumy told me I needed the anti tnf else I'll be fused in 5 yes 10 max. I'm crapping myself if I'm honest. Facebook has a UK AS page, lots of young people on it and lots of people taking these drugs. Most say it's been life changing but need to start early before the fusion starts for most benefit.