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Ankylosing Spondylitis and Adalimumab immunosuppressant therapy

(21 Posts)
1nsanityscatching Wed 26-Apr-17 20:01:56

My daughter 23 has recently been diagnosed with Ankylosing Spondylitis. In the space of four months she has gone from living a full and active life to being in constant and severe pain, dosed up on morphine, diclofenac, tramadol, amitriptiline, paracetamol and oramorph. She works between one and two hours a day and spends the rest of the time in bed or on the sofa.
She's lost a stone which is a significant amount when she only weighed seven stone to start with because she is in pain or suffering side effects.
She was always independent and now she relies on me cleaning her house, cooking her food and running her about as driving is painful.
She has had xrays and blood tests and will be starting Adalimumab in the next three or four weeks if everything is clear.Wondering whether anyone has experience of either AS or immunosuppressant therapy?

Grumpbum Wed 26-Apr-17 21:08:30

Yes I take humira for an axial spondylitis I'm like a new woman - 100% but massively better than I was

Grumpbum Wed 26-Apr-17 21:08:45

Not 100%

1nsanityscatching Wed 26-Apr-17 21:23:51

Oh that gives me hope, it has been devastating to see dd being ravaged by this.It struck out of nowhere although for the last year she has had repeated attacks of uveitis. She went to the eye clinic for an appointment and mentioned she had a painful hip within a week she was totally debilitated.
Initially rheumatology planned that they would manage the pain and look to start immunosuppressants in July if they couldn't get good control but nothing is helping the pain and an MRI showed significant and rapid changes so Adalimumab will start as soon as bloods and xrays have been checked.
It feels like her whole life has had a steamroller run through it. Thankfully she works in Local Government and they are being incredibly supportive in so far as she can turn up when she is able and leave when she needs to and she has had good support from occ. health but in three moths she will lose half of her salary which is a worry as she lives alone (although we can help out) and has bills to pay.
Hopefully the Adalimumab willhave a significant effect by then though.

rosie39forever Wed 26-Apr-17 21:37:20

Hi, dh started taking humira for psioratic arthritis 3 years ago and has been in complete remission ever since it's been a total miracle drug for him hope it has similar results for your daughter😀

1nsanityscatching Wed 26-Apr-17 21:39:43

Oh this thread is giving me hope flowers

ITMama1 Wed 26-Apr-17 21:44:53

3.5 years remission on Adalimunab (humira) for Crohn's Disease. It truly is a wonder drug as I was allergic or unresponsive to all other treatments. I hope it has the positive results you are looking for for your daughter.

1nsanityscatching Wed 26-Apr-17 21:59:26

That is brilliant flowers

fluffandsnuff Wed 26-Apr-17 22:02:41

Can't answer the question but had two close relatives with AS and just wanted to say how sorry I am that she has this as I wouldn't wish it on my worst enemy xx

Madhairday Wed 26-Apr-17 22:03:40

My 16 year old dd is also starting humira in the next few weeks if her bloods/x rays are OK. Hers is for psoriasis (she's 90% covered in often bleeding plaques so pretty debilitating) really hope it works for them both. So sorry to hear your dd is in so much pain. I've heard nothing but good about the drug so really hoping. flowers

1nsanityscatching Thu 27-Apr-17 11:54:07

fluff it has devastated me watching dd's life crumble and seeing her in extreme pain daily.
madhair fingers crossed for both our daughters that they see great results with the humira. It's so tough seeing them suffer when they should be enjoying the freedoms of youth.

plutohasfeelingstoo Thu 27-Apr-17 12:10:44

Op I have psoriatic arthritis and got it around the same age as your dd. Mine took a while to be diagnosed but like your daughter I was completely debilitated. Started humira six months ago and I have my life back completely, I felt the effects the day after I took the first injection. It's changed my life and I hope it works for your dd just as well. It also cured my needle phobia flowers

plutohasfeelingstoo Thu 27-Apr-17 12:17:32

I hope it works for your dd too madhair. It's been a life changer for me flowers

1nsanityscatching Thu 27-Apr-17 12:53:03

Pluto more hope flowers Dd was always scared of needles but she's had so many blood tests now she isn't bothered anymore. She says it helps that she's in so much pain she doesn't notice the needle going in now anyway.

rosie39forever Thu 27-Apr-17 15:11:00

Humira comes in an injectable pen, hold it on your skin, press the button, hold for a few seconds and done you don't even see the needle, my dh only injects once a fortnight!

Madhairday Thu 27-Apr-17 15:27:55

Thank you pluto flowers so delighted it has changed your life for the better.
Insanity maybe we can compare notes over the next few weeks as they start?

1nsanityscatching Thu 27-Apr-17 15:54:10

Madhair yes definitely, we will compare notes. Feeling almost excited now reading all these positive experiences. Dd was told the nurse will administer the first two and show her how to do further ones herself.
Dd managed two hours in work today so a good day for her really. She's resting now in the hopes of staving off paying for it tomorrow.

Madhairday Thu 27-Apr-17 16:10:59

Yes that's what they told us re the nurse doing the first two. I'm also feeling hopeful. Here's to it working for our girls! wine

plutohasfeelingstoo Thu 27-Apr-17 17:56:10

I got incredibly nervous doing my injections and I found they do sting quite a bit . Not everyone has said this, maybe I'm just a big baby. I found holding ice on my leg for about 30min before doing it pretty much numbs the pain completely. I also have a glass of wine on injection night, might work for your dd 1insanity, but definitely the ice as well Madhair ! It works wonders. And like I said they might not find it painful at all, might just be me!

gobbin Sun 30-Apr-17 23:44:28

They removed the stinging citrate from the Humira pens last Oct. I can't feel them at all now, brilliant! Wonder drug.

Waterlemon Thu 13-Jul-17 22:17:16

My DB has AS - I didn't know that girls could suffer too! I thought the gene was passed on by females, but only boys suffered with the condition!

His condition was diagnosed quite late, so a lot of damage was already done. However, I know if caught early enough, treatment will slow down the process of the condition. The key is doing your research, and making sure that your daughter is under a good specialist. Some of my db health issues could have been prevented/avoided had he recieved the appropriate treatment from the Drs that he saw at the time.

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