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#457863 - 12/08/11 10:58 PM new member need your help
boomshaka Offline
New_Member

Registered: 12/08/11
Posts: 4
hello everyone,

i am diagnosed with active AS. there's a bit of fusion on the lumbar region. i've been suffering from joint pain for almost 10 yrs now. bt, my GP never bothered to find its root cause until last month. now i am seeing a rhumy. he put me through Mobil for a while, which seems to be working smile but last week he advised me about TNF inhibitors.

i am bit worried about this treatment.. could you guys please help me? what are the good and bads of TNF inhibitors? do i need to take it life long? does it stop working at some point? what if stops working? can i get rid of the fatigue?
btw, i am 28 yrs old male from Australia.

any advice appreciated.

thanks

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#457876 - 12/09/11 07:37 AM Re: new member need your help [Re: boomshaka]
Dotyisle Offline


Registered: 03/07/02
Posts: 9494
Loc: Rosario, Argentina
Hey there and welcome to Kickas

Not much help with personal use of TNFs. But from reading posts here, many have found relief from the several different TNFs... if one does not work, sometimes another does.

After a while sometimes may get reaction or becomes less effective and Kickers here have switched to other TNF.

There are some other options as well if that does not work... when meds caught up with my liver, I switched to No Starch Diet. I was on azulfadine before that, and it worked very well with my AS.

Kickas is a great place to learn and receive support... hope you like it.

Take care and take one day at a time.

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#457879 - 12/09/11 08:11 AM Re: new member need your help [Re: boomshaka]
gbash Offline
Master_AS_Kicker

Registered: 10/09/08
Posts: 892
Loc: Oklahoma
Hello and welcome to KickAS,

I suffered for 15 years with extreme AS pain before being diagnosed. I then went on Enbrel, which worked so well that it seemed that I didn't even have AS. I even went skydiving after a few years on it. It was great for four years, and then I got a lot of nerve damage from it, so I had to quit taking it. The AS came back with a vengeance and was worse than ever. I'm now doing NSD with some pretty good results. I've thought about it a lot, and if I could go back in time, knowing that I could get nerve damage, I would take Enbrel again. Those four years of being totally pain free and fully active were worth it.

--Greg
_________________________
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.

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#457906 - 12/09/11 12:21 PM Re: new member need your help [Re: boomshaka]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
The NSD does help some of the posters here, most of us don't see all that much difference. There are several TNF's to choose from. Some Rheumies have their favorites. You will have to jump through all the hoops that your health care providers set up, but I'm sure that your doctor can take care of that. When I started taking Humira, I went from being a painful cripple to being able to do whatever I wanted to do, pain free. It only helped for about a year, but now it's time to pick another.

Have a good talk with your Dr. I am hoping that you will find just the right treatment plan to give you back your life.
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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#457937 - 12/10/11 09:15 AM Re: new member need your help [Re: boomshaka]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6114
Loc: Reno or SFLU Philippines
WELCOME, boonshaka:


Quote:
could you guys please help me? what are the good and bads of TNF inhibitors? do i need to take it life long? does it stop working at some point? what if stops working? can i get rid of the fatigue?


Yes, but mostly You must help Yourself.

The TNF-a inhibitors are wonderful, very clever drugs that can, as a minimum, help in pain management. They do not address the cause of AS, but side effects are rare but sometimes quite serious. And there is also the potential to develop antibodies to these agents--typically "40 exposures" is a rule with allergists. Perhaps if used in conjunction with MTX or other terrible immune suppressant drug, the useful life can be prolonged. One of our members has used Enbrel for over 10 years and has suffered none of the potential side effects and enjoyed solid remission, combining some level of dietary starch restriction. Ebringer advised that doing so would allow the drug to be much more effective and he was right about this also.

These biologics have their place only because they might be less harmful than the drug and type of drugs You are already taking--NSAIDs. Great but short-lived news that Mobic seems to be 'working,' but the side effects can really sneak up on You and these drugs greatly accelerated my disease process.

In over 90% of patients, Ebringer's LSD (London AS Diet) worked to a scientifically provable level at the nine month benchmark. Too many individuals are non-disciplined about the diet and their efforts even under ideal conditions are subjective, since they have no absolutely certain way to measure their own disease activity. Ebringer did and has provided us with useful results especially in his papers on "Etiopathogenesis...." and "The Use of a Low-Starch Diet..." both published here on KickAS.

You are young enough to avoid more fusion, but there is no easy way: No drugs, no well-meaning physicians, no prayers, herbs, or exercises that will do the work for You. It requires discipline and hard work to take control of Your health.

The fatigue will almost totally relent, once You have eliminated the inflammation.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#457940 - 12/10/11 11:05 AM Re: new member need your help [Re: boomshaka]
boomshaka Offline
New_Member

Registered: 12/08/11
Posts: 4
hi friends,
thank you so much for the answers.

i have a family history of poly-cystic kidney disease.. but i haven't experienced any kidney problems so far. btw, seeing my rhumy this tuesday.

thanks again to you all.

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#457948 - 12/10/11 02:01 PM Re: new member need your help [Re: boomshaka]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 161
Welcome...please heed Dragon Slayers advise
_________________________
Where your mind goes your life follows

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#457949 - 12/10/11 02:03 PM Re: new member need your help [Re: boomshaka]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 161
Welcome...please heed Dragon Slayers advise...you could stave off the meds as well as the debilitating pain and fusing.
_________________________
Where your mind goes your life follows

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#457955 - 12/10/11 09:58 PM Re: new member need your help [Re: boomshaka]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1185
Welcome to kickas.org boomshaka. This support group has been soooo helpful for me. I never heard of a no starch diet until I came across it here. In fact, in the last 3 months my inflammation marker (ESR) has come down from 57 to 34 just from the NSD. I read the post above by Dragonslayer that it may take 9 months on the NSD to get my numbers down to normal and feel better again. I wouldn't know what to with myself if that happened.

As the others mentioned above there are lots of medications available to treat your AS. It would be nice if the diet worked for you, but it's nice to know there might be medications that can help your symptoms.

All the best to you, Take care!
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise

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#458143 - 12/14/11 02:08 AM Re: new member need your help [Re: ValsMum]
boomshaka Offline
New_Member

Registered: 12/08/11
Posts: 4
Hi Valsmum.. sure i'll try and follow NSD as much as possible if not 100%. thanks for the tip

i took my 1st shot of Humira yesterday. was bit worried about injection site reaction.. there's none so far. seems to feel a lot better today.

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