Ankylosing spondilitis how to cope ,

[Matt80]

humira does not seem to help , what do you think ?

[Tillytop]

Hello Matt80.

How long have you been on Humira? I ask because I know it can take a while to kick in if it's going to. Presumably because you've got to Humira, you have been through the other disease modifying meds already? If Humira isn't the drug for you, I don't know if the other biologics (Infliximab, Enbrel, Rituximab etc) are also used for AS. If so, it sounds as if you need to be talking to the rheumatologist about an alternative plan of action for you.

Really hope things improve for you.

Tillyx

[Beth58]

I have A.S and despite various medications over the last 20 yr I continue to deteriorate to the point of having very poor quality of life. However, I do have many friends who are on various Biologics and they swear by them, in fact many call them their life saver.

Good luck

Beth x

[earthwitch]

Definitely ask your rheumatologist about trying a different anti-tnf. Also consider joining one of the specific ankylosing spondylitis forums to be able to ask questions and get support from far more people with this diagnosis. The two biggest forums are both international ones based in the US - kickAS and the spondylitis association of america (google ankylosing spondylitis forum and both of those should come up). Its nice having a UK based board like this, but for accurate information on AS and for far more people who share the same problems, the international AS boards are really good value.

Also have you joined the UK association? Its the National Ankylosing Spondylitis Society (NASS). I think they have a newsletter, but they definitely have a phone advice line that can be really helpful.

Beth - is there a reason you aren't on anti-tnfs? If you are still deteriorating it might be worth pushing your rheumatologist to try them - I've heard folk with even quite advanced disease get significant benefit. I know they seem far more reluctant in the UK to put folk on them early than in other countries, which is a real pity because as you say, they are a miracle drug for a lot of people, and in AS, where DMARDs don't actually work as disease modifying drugs (like they do for RA), anti-tnfs (biologics) and NSAIDs are really the only effective anti-inflammatory treatments for AS.

[_andy_]

ive heard / read , that one of the anti tnf ,, works very well to start ,, but can suddenly stop working .. this is due to the drug working well with its fight to hellp the immune system ,, but themn after time your immune system blocks out the treatment ,, stopping it from working .. now i think this is humira ... but i could be wrong .. like earthwitch says ,, other anti tnf are avaliable ,, and i also believe a new one is about to be introduced to the AS table next year if not already .. so to my knowledge i know of another 3 or 4 to try .. the NASS site does have a helpline , for anyone with questions .. this would be a good place to start , before you visit your rheumy again ..

[uniboy20]

Hello Matt80.

I;m on the Humira ant- tnf. i've been taking it for the past two years and i must say it's the best medication i have ever taken. Yes i still have my ups and downs with flar ups, but its well worth the weight in gold (if that makes sense). It did take twelve months for the injections to kick in and for my body to respond well to it, but my consultant did say after a couple of years there is a chance that this medicane will not longer take effect and that we will have to think about other types of medicane.

Hope that helps.

[earthwitch]

Andy, you are right in some ways. One of them (the one that is based on mouse proteins rather than human proteins) is much more likely to trigger an allergic reaction to it. I think it might be remicade though? The other thing is that in AS, while anti-tnfs are about the best option out, they still don't know enough about AS to be able to develop drugs that totally target the way the disease works. Which means that response to any of the anti-tnfs is variable, and also the length of time they will keep working is variable. The thing is to try each one for a long enough time to be sure that you aren't getting a response, keep on taking ones that work until they stop working, and then move on to the next one to try. Some folk will end up trying all three of the commonly used ones, and there are definitely more being developed all the time.

[Matt80]

How many of you with A .S get Gout

i have it so bad on and off