Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Now what?

I seem to be running out of treatment options. Does anyone have any suggestions?

I started treatment with Enbrel a few years back. It worked wonders on my pain. Sadly, it had no effect on the AS itself, which spread rapidly hidden under the pain relief of the Enbrel. Only because my specialist used me as a test subject for his students was it discovered that the AS now is present in the eyes, intestines and all major joints and possibly all minor joints too. Everywhere they checked the inflammation was now present. On my file it says AS poly arthritis global.
I was then put on Humira, which did have some effect on the AS but did nothing to help with the pain.
I have now been put back on Enbrel and topped with Methotrexate. The effect is marked on pain but seemingly had no effect on the AS.

Even with the improved pain relief from being back on Enbrel, I stil use 30mg Norspan, 2 x 20/10 Targin, 2 x 200 Celebrex daily and 5-10 or 20 mg Endone for spikes.

I am still doing my exercises and stretches.

What else is there out there that people had success with when it comes to a really aggressive AS? The annual x-ray ha showed what the specialist describes as "Explosive development" despite being on these normally good drugs.
I've tried the No Starch Diet which had no effect what so ever other than a welcome weightless.

Can the AS be uncontrollable?

Cheers

Hi Kilroy,
The NSd can be tricky for some of us folks, maybe you could feel better by reducing your sugar and or dairy.
I am sure you feel upset trying medications that don't work, I have been down that road too. You get so excited hoping it will ease the pain and it just brings it down a little bit and it's hard to stay hopeful. Try not to get too discouraged.
I hope you feel better soon, take care.

Kilroy, maybe you can find some answers in this book. It appears at first glance to only be about gout, but the author shows how uric acid issues are much more widespread than just gout. I used his ideas to deal with a lot of my different pain issues.

http://archive.org/details/uricacidasafact05haiggoog

Hi kilroy,

I'm glad to read that you have found some success in reducing your pain on Enbrel but imagine that it must be discouraging to know that the progression hasn't slowed at all on your xrays. 'Explosive development' must have been sobering to hear from the specialist. Your AS sounds very aggressive.

It does sound like you have been trying all the main medication options and combinations. I wonder if it would be worth trying Remicade for a year to see if that biologic might offer more control, simply because we all seem to react a bit differently to each. I've been on Remicade 7+ yrs and feel certain that it has at least slowed the progression,... I don't sense that it has stopped completely but it's hard to tell and mine is likely not nearly as severe as yours, I would guess.

AS is known to be a progressive condition and there is no known cure, but some folks seem face more rapid progression and severity and for others it is milder/slower. The biologics class of meds do seem to offer the most hope for disease modification, in my opinion. Really hope you can find a way to get this under better control through some combination.

All my best,
mig

Thanks to both of you.

I'll find the book and talk to the specialist about Remicade.
I hope it can at least be slowed down, because as mig says, that sort of messages are not exactly what I won't to hear in the future.

Thanks