Date: 13.01.2011
From: Jayne
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Subject: Ankylosing spondylitis - Anti TNF treatments
Hi, i'm new to this site, but wondered if anyone could give me some advice - i'm 28 and was diagnosed with ank spond at 17 - been on methotrexate since 1998 and infliximab since 2002 - having a few issues with infliximab in the last couple of years - (although it has been totally life changing for me!), and blood results are getting progressively worse... so they are thinking of changing me to another anti TNF treatment - just need to know if anyone else has gone from infliximab to either humira or enbrel and what was your experience... any information or advice would be much appreciated! thanks! Jayne
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Date: 14.01.2011
From: Lily
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Yes Jayne, I have been on both infliximab and enbrel.I didn't respond to infliximab but found Enbrel life changing.I was on it for two years before I began to suffer from side effects unfortunately. Everyone is different and you may have no problems at all its certainly worth a try.Lets face it anything is worth a try if you are in pain!I have been lucky enough to be put on a new drug now that blocks interluken-6 and having no problems. So dont worry Jayne there are plenty drugs out there and there are many more in the pipe line Im sure you will be fine on another anti-tnf treatment.Good luck!
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Date: 15.01.2011
From: sandra lowe
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
hi jayne, i have been on enbrel for over 4yrs now and like lily it has made my life so much better, i have had ra for 33yrs and was on all kinds of meds and was put on humira first but 6 weeks later had a bad flare up so went on enbrel, but my friend is on humira for about 3yrs and is great on it.take care xxx
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Date: 15.01.2011
From: Jayne
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Thanks to you both for responding - i am just concerned about how others have reacted to it and also - having been on infliximab for so long - with it still working ok - i'm just a bit wary... need to find out what the transitional period between one drug an another will be like really - as cannot face being incapacitated again xx
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Date: 16.01.2011
From: leigh ingram
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
hi i am leigh and i am 13 years old and i have arthritus i have had it for nearly 2-3 years i am a very successful judo player i just want you young people like me that have arthritus to not let it stop you what ever you do please take this in to account and tell me whether you or your son or daughter has arthritis
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Date: 18.01.2011
From: Lisa
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
I came across this site while looking up some things concerning my husband who has Ankylosing spondylitis. We also joined the facebook site "Ankylosing spondylitis" and is a huge help with lots of support...
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Date: 15.02.2011
From: George Ashford
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Hi Lily, I work for a market research company that specialises in the medical device field. We are looking for RA sufferers that either currently or have previously injected Enbrel and either live in the London area or are willing and able to travel to London to take part in an interview. The interview will relate to a new device to help RA sufferers administer their drugs. We will pay £200 to cover expenses and the interview would last approx 90 minutes. Would you be interested? Please do get in touch if you would like to know more - george.ashford@creativemedicalresearch.com Best regards,
George
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Date: 01.07.2011
From: Polly
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Hi,
My husband was diagnosed with Ank. Spond. 2 years ago and has been taking various Anti Inflamatory drugs for this time, which, unfortunatly don't offer him much relief. Following a recent review with his Rhumatology Consultant, it has been recommended he starts taking an Anti TNF drug. She has asked us to do some 'research' to find out about other patients experiences in taking these drugs, so he can choose which is best for him.
He has been given the choice of either: Enbrel, Adalimumab or Golimumab (a recently licensed drug as far as I am aware).
I understand everyones experience is different, but any comments would be a great help, as we are very 'new' to all of this. Thankyou
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Date: 14.10.2011
From: Gary
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Hi im new to this site and have also been diagnosed with AS as well as FM,RA,and Lupus,i was turned down for anti tnf about five years ago although i hit all the criterias. since then i have changed my consultant,and for the last five years ive been maintained on mtx 25mg and leflun 20mg /lodine600mg ,and 15mg pred backed up with Co co 30/500 and oramorph but was slowly getting worse over time and ended up in hosp again,now the consultant told me to go for anti tnf again.and over the last four months ive hit all the criteria again and have been off all my meds apart from the pain killers, and have to have Iv steriods 1gram every2-3 weeks but they only work for 3-4 days ahd only give me slight releif. ive now had seven Ivs and am still waiting for the ok,but im so worried i wont be aloud them again,has anyone else been through this kind treatment, they said that anti tnf would make me very ill or worse last time, icant walk ,in constant pain, and have recently had a very bad chest infection,and im very low at the moment, any advice would be helpfull, or has anyone had a simaler expereance, im slowly beging to lose hope. Thanx Gary
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Date: 15.10.2011
From: Linda
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
I wonder if any of you have heard of the low starch diet. It was devised by Professor Alan Ebringer as a treatment for AS. The theory is that starch feeds the bug that causes AS. There is a website Kickas.com. It has loads of information on it. The diet is not a cure but it may help with the symptoms.
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Date: 15.10.2011
From: Linda
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Subject: Re: Ankylosing spondylitis - Anti TNF treatments
Sorry, it is Kickas.org.
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