Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I've reached that stage - Anti TNF - Questions ..

Quick Skinny : Diagnosed at 21, managed it pretty well for about 20 years, primarily low-starch diet when it hit hard plus loads of exercise.

Mid-40s, pain got bad so was flipped onto Salfasalazine + Naproxine. All great for pain management.

Now 50: Saw my Rheumy today for the first time in 5 years - mainly because I can't tip my neck right or left (ear-to-shoulder) - pretty much ZERO movement, or turn my neck (chin left, chin right) - probably about 20 degrees either way.

He said Anti-TNF may be the way to go. Now 3 month of blood tests, x-rays etc etc and then for me to say Yes or No !!! So just starting my journey of research !

I saw the sticky "Anti-TNF" post on this forum, however that looked pretty old (2003), so just wondered if folks knew of more recent research or had experiences.

I have to say the thought of injecting myself is probably the first thing I need to get my head around - a big mental block - even though it might only be weekly. I hate my regular blood tests - I must just be a big Southern English Jessie (that won't translate for the majority - but might identify anyone in Hampshire that might want a beer and share their experience) !!!! :-)

Cheers, Finchie

My eldest went to Winchester uni.

I have been on biologics (Enbrel) for a while. Marvellous.

Go for it

Hi Finchie. My journey into biologics has been an uneven one.
1. Humira - Was on it for 5 months and felt no discernible benefits so I stopped.
2. Enbrel - In the 2nd month I had the largest nausea attack and massive headaches I had to quit. I also started getting big red rashes.
3. Remicade - After the 3rd infusion I started gaining weight, 1 pound every 2 days for no apparent reason. I had not changed my eating habits and was 204 lbs when starting. Nobody gave a true medical reason for the weight gain. In short order I was 223 lbs and I was starting to get heart flutters. So many heart flutters I was in Emergency about 10 times in one month. I stopped Remicade immediately after that 3rd infusion. It took months but now the flutters are almost a distant memory, last one was September 24.

Some people get great results right away with biologics and that is fantastic. We're all wired differently and that's a medical law

If you go through the AS Pharmacy, you'll probably find more current information. For those of us who respond well, the biologic meds have been a life-saver ... literally.

Observe strict protocols around hand washing to avoid infection, get your blood testing done regularly and hope you respond to it well.

Until they come up with approved meds acting on IL-23, these are the gold-standard treatment. We don't all respond the same way because we're all different, but they are tolerated by most patients very well.

Warm hugs,

Thanks Kat, Timo and ineptwill.

I enjoy the start of a journey, great guidance and advice. Who knows where it ends up.

Just watching the England vs France football match - so have things in perspective after the Paris tragedies !! There is always someone worse off...

Cheers, Finchie

Recording that game, watching Denmark - Sweden

I've been one of the fortunate ones. Started working within hours of getting my first Humira shot. That was back in June 2013. Its only gotten better over time for me. I flare less now and less severely. I take Humira every ~10 days, no side effects. For me it has been a game changer. I was very close to disability before I went on the Humira, because it took so long to get diagnosed and treated, but once I got on the Humira, things really turned around for me.

Hi Finchie,

I live in South Wiltshire.
Do you attend hydrotherapy? I go to a group which has helped immensely with both pain, mobility and meeting others in a similar position. There are alot of us there with AS, I didn't realise so many people were affected by it in such a small geographical area until I joined.
I started anti tnf and it didn't hit me immediately but having now come off it for other reasons I see that it did definitely improve things. One thing I notice a great deal is the fatigue. I didn't think it would help that but it really did as I'm feeling somewhat like a zombie now I'm no longer taking it.
I think it is worth you trying to be honest. Mine has also been going strong since I was 21 and my neck has recently joined the AS party. Oh what a joy.

Read everything and make an informed decision on potential risk versus quality of life. You don't have to think of it as a lifetime commitment should you try it. You can see if you respond then determine whether to continue. Best wishes

I've taken 5 different ones.

1) Remicade--had 6 infusions, the last was 8mg/kg. Nothing.
2) Enbrel--started with 1 50mg shot/week. Worked for a day or two, then back to horrible. After 3 months of this, changed to 2 25mg shots per week. This was the best for me. Got things working well. At about 9 months, it all seemed to stop working.
3) Simponi--only one dosing level. This never really lasted more than 2 weeks. Gave it up at 9 months.
4) Humira--worked great almost immediately. By 2nd month, it was great. Almost missed a dose or two because it didn't wear off by 2 weeks. But by 4th month, rheumy was unhappy with my low WBC and it was stopped at 6 months because of the very low neutrophils and WBC. Without the Humira, the counts returned to normal within a month.
5) Cimzia--currently have taken it for almost 2 yrs. It works pretty well, but not as well as Humira did. My dosing is 2 shots once a month. I tried one shot every 2 weeks, but it wasn't enough to stop all the symptoms/pain. I've had a couple of flares, but nothing terrible. First happened about 9 months into it. Above, you'll see that things tended to get bad around 9 months. This time, I waited out the flare and it got better again. Had to use steroids, but that helped.

Everyone is different and no amount of people telling you that X is the best thing since sliced bread and will get you into a spondy remission will make it so. My rheumy liked to start with Remicade because it had the most flexibility of dosing. That's true, but not everyone can take Remicade and get good results. See what the rheumy says and see what works for you. Good luck!