Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Vitamin D

Options for some, studies going on all over the world, new AS meds continue to have research trials:

Clinicaltrials.gov

Also, do you have any process to appeal this decision? SED rate has not been used here as an exclusion to biologic meds because it's inconsistent in AS.

I started LDN in sept 2009. It was great for the enthesitis. I stopped tearing tendons and ligaments and my tendinitises got a lot better.

But still I flared. It did nothing for the gastritis or bowel issues. Still had neck and SI flares. Still had eye and mouth and skin flares. Did nothing for the fatigue during flares.

But yes, it did help the enthesitis.

But I was still really dysfunctional when my my neck and/or SI flared, really dysfunctional.

so, needed more. that's where first methylpred, then humira came in.

humira makes my flares milder and I get through them / over them faster.

It took me many years (12) before I could find a rheumatologist who could or would dx and treat me, thus why I did all the other things first, like you.

but it wasn't enough, so i kept looking for a rheumy who knew how to really help me...and for me, that was having someone who knew how to get me the biologics.

but yes, it was a long road for me as well.

to get to the biologics, I had to have tried at least 3? nsaids. by then I had tried almost every class (all but one i think) of nsaids and cox 2 inhibitors. some didn't work. the ones that worked caused side effects of edema and/or gastritis.

i know different insurances have different requirements, that was my insurance's requirement.

Too, I had to have a reason not to try SSZ first; by then I had started developing NAFLD (from diabetes and high LDLs) and so my liver enzymes were elevated, which precluded me from trying SSZ.

and I had tried most everything else.

and the methylpred worked like a charm.

and i had been dx'ed not just with enthesitis / joint inflammation, but by then with GI inflammation (by the gastroenterologist) and psoriasis (by the dermatologist).

In other words, you build a case. its not one thing, but the building evidence that gets one where they need to go in many cases.

others are more fortunate not to have to walk such a long road. but many many (here), it is a long journey.

thus, we understand, and are here to help you keep on keeping on, continuing to try to get the help you need.

please find a doctor who can work around that reason. my sed rate and CRP were never above borderline. old doctors said that meant i didn't have an inflammatory arthritis; my current rheumy says hogwash to that.

its very very common for people with spondyloarthropathies not to have either marker in our blood. the entheses are a nonvascular structure and thus the inflammatory markers often don't end up in our blood.

too, we flare and then are a bit better between flares; try getting blood work done when at your worst, that might make s difference. at my worst, i couldn't walk from the bed to the bathroom without assistance, so no way could i get in for blood work; i always wondered in hindsight if my sed rate and CRP would have been higher at those times.

but really, its common for them to never be high. there really is no correlation for many between those markers and our symptoms.

that is NOT a good enough reason to be denied.

find a doctor who is smart enough to know that. and one that is motivated enough to veto the insurance companies on that one. depending on who is blocking you on that non-reason.

i read recently that someone was blocked from biologics because they are HLAB27 negative.

"they" will come up with all kinds of useless excuses.

I had a rheumy that told me that all those meds were "too dangerous". well, uncontrolled inflammation is dangerous too. not to say anything about lack of quality of life.

don't let them off the hook that easily.

Thank you Sue interesting post as always.

Problem is thousands of people here are applying for Humira treatment not just those with AS and it's causing a huge burden on the national budget.

Over 150,000 have psoriasis, thousands with RA and more and more young people with Chron's disease all waiting for Humira.

Hello, dmx07:



I HAD asthma directly related to AS.

I got rid of my AS and the asthma at the same time (took about six months for the costochondritis to relent and I then "challenged" my asthma and no longer had it).

Yeah, I might know why and how there is a connection.

As Tim mentioned, it was Krishna who eliminated his AS by increasing his vitD and drinking milk. I think he walks almost daily in direct sun without shirt (he has the physique for that!), and also supplements with oral vitD.

Whether You have AS for the rest of Your life might be totally up to You.

I've had AS most of my life and it was due to my own ignorance--ignorance can be cured, but willfulness shall be our doom.

I paid my doctors more than I was making--the difference is that I did my job and although I paid them to know more than me about AS, they failed miserably. My stockbrokers were no better but that is only money. I suppose the clergy has the same failing, but I never fell too deep into their clutches.

Finally had time to learn enough about AS to overcome it, but only after I could no longer work. Such is life.

My Latin Professor used to say that "If You cannot be a shining example, at least be a dire warning!" I am the dire warning about what AS can do to us--if we allow it!

HEALTH,
John

Important thing is you are well now Dragon I think that's absolutely amazing given the poor prognosis associated with AS.

Vitamin D helps yes. I take a daily supplement.

BTW Dragon can you tell us your story please and describe in more detail how you got rid of your AS?

Hi,

I believe John's story is posted somewhere here.

Please look at this article: Medscape article on ASAS Diagnostic Criteria

It has been found that ESR (sedimentation rate) does not always elevate in patients with AS/SpA. In fact, elevated ESR does not even appear on the diagnostic criteria anymore and as far as I know, the EULAR criteria do not either (I may have misunderstood that, however).

Please see if you can be referred to a rheumatologist that is familiar with the ASAS and EULAR criteria when it comes to Ankylosing Spondylitis.

If the new blood test doesn't show elevated ESR, that means nothing. Mine never went very high and I will have been on biologics for ten years come August because my rheumy understood these things.

Warm hugs,

Of course, dmx07:

I have added my story to our NSD Success Stories; it can be found properly described as My Long, BORING, AS Story

Regret I have not updated this and probably should add updates and make changes for brevity's sake. The story is, however, very very simple: The right antibiotics plus diet put me in remission and properly following diet kept me in remission so long I no longer require antibiotics or even very strict diet. I am fully confident of my methods (some of which are disclosed in my "Important AS Resources" active signature link), which only support Professor Ebringer's work. As the years pass, there is only more support for diet and the germ connection.

HEALTH,
John