ankylosing spondylitis anyone?

lucia1

Hi,today i've been diagnosed with this ankylosing spondylitis which sound so alien to me :roll: and the consultant offered me Humira.I would like to talk to other ppl to find out more abt side effects.

I have a 8months baby and i'm breastfeeding i so sad bcz i'll have to stop now..i dont know how im going to cope with this

please reply with pros and cons people

lindalegs

Hello Lucia,

I'm so sorry you've had this diagnosis and at such a special time of your life

I'm on Enbrel (Etanercept) which is the same family as Humira as they're both anti-TNF. Enbrel has been a wonder drug for me as I feel so much better more so than I have for years.

You will be monitored for side effects with regular blood tests ............so far I haven't noticed any.

You will feel better than you do now once your treatment takes effect, I promise.

Others will come along to help and support tomorrow as it's late now.

Luv,

tillytop

Hello Lucia and welcome to the forum.

I am so sorry about your AS diagnosis. I know it's a lot to take in when you are first diagnosed, but you have come to the right place for advice and support - this lot have been absolutely brilliant in supporting me whilst I have been struggling so much to cope. Between us we have all sorts of "flavours" of arthritis and have experience of probably pretty much all the meds going so you are in good company.

In terms of Humira - as Legs says it is one of the "anti-tnf" drugs and it is self-injected, usually every 2 weeks. I was on Humira for rheumatoid arthritis for about 2 years and it certainly helped me - and before that I was on one of the other anti-tnfs, Infliximab, which for me was an absolute miracle and gave me 5 virtually RA free years. Unfortunately both disagreed with me in due course and I had to stop them but I wouldn't have missed the opportunity to take them for anything. I know that new meds are scary but I take the view that it's got to be worth a try because, if you don't, you could be missing out on an opportunity to feel so much better than you do now. And if they don't work for you, or don't agree with you you can then discuss other options with your consultant. I know there are others here on Humira so hopefully you will get some more answers soon. If you do go for it, really good luck and please do let us know how you get on.

The other thing to say is that, if you look at the "Publications and Resources" section of this site you may find that there are information booklets about AS and Humira. The Arthritis Research UK website also has some good leaflets to download.

As for coping - I know it's hard to believe it now but you will learn strategies for coping, and we will be here to support you - please do keep talking to us. If you feel it would help to talk to someone in person, you can always ring the AC Helpline for a chat - number at the top of the page.

Thinking of you.

Tillyxxx

stickywicket

I'm sorry about the diagnosis, lucia1, and that you'll have to give up breast-feeding your little one.

Mine's RA though there are quite a few on here with your brand of arthritis and even more on Humira. (Not me.)

This might help a little http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Ankylosingspondylitis

succotash

Hi, I dont know much about your condition or your treatment but do know how you are feeling about your baby and breasfeeding.

I really wanted to reassure you that you are fantastic for feeding your baby for so long. I am really impressed. he/she has had 8 months of your lovely milk and undevidied attention and that will have filled him/her with lots of nourishment and antibodies and will have enriched your attachment to him/her.
You can still feed your baby closely with a bottle and get eye to eye contact whilst doing so. Its all a great bonding experience that lots of babies just dont get, even bottle fed ones.

Please dont beat yourself up too much over it, you have done a great job already and I am sure you will continue to do so.

lucia1

Thank you all for your reply...
My baby will have an operation to her hips for (Dysplasia)at the end of this month so i dont think i'll start the Humira soon The Gp gave me a stronger meds Co-drydamol and i hope this will help for a while....I ask her for anti-depressive and no way she would've give it to me...maybe is best this way but i still dont know how to cope with all of this on my own.

I'm still in shock ,i'm only 33 years old and i have my mother's disease.

stickywicket

You are not on your own, lucia1. You have us now.

I understand where you're coming from re your little one's op and the humira but have you talked it over with someone eg GP? The sooner you can get on some decent meds the bettter for you (both of you) but I do realise that you don't want to be suffering any potential side-effects just yet. This is a tough one. keep talking to us.

Folara

Heya lucia1. I can't help with humira as I have no experience but I just wanted to say hello and please don't despair. Everything will work out for the best in the end.

It does seem to me that Arthur is an inherited relative that we don't want to be acquainted with. My grandmother and my mother have both suffered and they introduced me to Uncle Arthur when I was in my early 30's.

Good luck for your little ones operation. My friends daughter had the same op about 4 months ago and it went really well so I hope that's some reassurance.

Fols x