Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group annual update, too long and un funny

well kids.

i do remember a day about twenty years ago when my then rehumy said kind o casually
'a lot of folks are worse off than you are, you're lucky you have such a mild case so well controlled by the Nsaid...no one's ever gonna write you up in some case study'
that's former rheumy...and i remember saying that i didn't feel blessed by six attacks of iritis in one year nor did i want to know what severe meant if this life was the 'lite' version
he upped my tylenol#3 from fifty for the year to sixty and let me have one refill...the good old days...about nine/ten years later he volunteered that maybe we might update xrays; but he wouldn't read me the xray report, 'well, lets just say it does show some damage in the SI' and he withjout comment gave a hundred tylenol#4 with four refills-
'take 'em as you need 'em.'

that's when i decided it was time for a fourth opinion and travelled 90 miles from home
so the new doctor wouldn't know the old the one...that xray report read 'totally obliterated SI, completely fused. the new rheumy said (not for attribution or testimony)
that it probably was a text book case of out of control, heightened disease activity left untreated.

just for ha's...since 1974 i taken: tolectin(tolemetin), daypro, naproxyn, sum'tin else,
indomethecin, prednisone, zyrtec (?), another sum'tin else, vioxx, mobic, celebratex,
bextra, sulfasalazine and methotrexate...what a long strange trip it's been...trust me
no one every starts out saying 'golly gee, i'm gonna take Nsaids for the next 31 years'
oh, and prevacid, protonix and sum'tin else again to undo the Nsaid damage to my tummy, klonopin, xanax, flexerile, skelexin, neurontin and bigger whup pain pills.

i will admit (sometimes brag) about more than casual experimentation and self 'medication' (hmmmm)...i have invested in peruvian agriculture and things that
fry your brain. I did truly like mescaline- that was the bestest of the zoomers...
{i've also looked a doctor in the eye and said, 'hey look, the last time i took acid was
1972; i just have an illegal state of mind these days'} it's true too.

but i'll tell ya i've never been so stoned immaculate as when taking three zigzaggers
and methotrexate at the same times.(that'd be xanax, klonopin and flexerile, all of which
are chemically related and have a symbiotic effect when taken simultaneously).

this getting like alice's restaurant...what i wanted to sing about is well...this week marks
four years on enbrel...i had i will admit given up hope, please just shoot me.

i do think i fully appreciate the inherent risks associated, i know i don't have a lot of the
risk factors that trouble others; and if it happens that i get hit by the big lymphoma Bus;
well i understand statistical probabilty- the odds are still one in one and a half million...
and well, some bus is get ya some days no matter what ya do.

i do know that the four years so far on enbrel has been an experience far beyond any
dream i could have hoped for...enbrel doesn't fix things that are busted; and, quite frankly, i'm distrubed that the scoliosis in the lumbar has become more painful, i'm
not happy that the damage to my foot (in a fall) hasn't ever healed up and i wish my
vision weren't getting worse.

but the Enbrel experience has been a miracle...i can walk for the most part in a straight line- no crab walk and no flamethrower in the butt. It's been more than two years since
i've even had a little cold or sniffle. Not saying i don't have issues, aren't impaired and
damaged...But i'm probably in the best shape now as ever in the past twenty years.
that veritable moveable feast of complaints and inflammation is, well, i don't know about
controlled but i've got a chair and a whip and the spondy monster mostly sits on a stand...roars a little but sits

stopped taking Nsaids in 2005, cut neurontin from 900mg/day to 200, still take the
klonopin to sleep and i do have pain meds- my doctor says i should take more of them,
'that's why i give 'em to you'.

the one thing we all know is there is no 'one size fits all'; there is nothing that is guaranteed to work for everybody...but, kids, if you're desperate and brave this stuff is worth trying.

my otherwise humorless next rheumy insisted for a number of reasons that he be the
one to teach me to do the enbrel shot personally ( i was terrified of needles and he didn't think i could pull the trigger myself)...i remember like yesterday- i stuck the needle in and bam it popped back out; he stood there loudly saying 'stick it back in, NOW! Your leg is clean and wiped, the needle is sterile, stick it in !!! do it.'
I did, oh gosh golly you can't be faint of heart at that point, and i pushed in the syringe.
no pain, no nothing, done...i put my pants on, the rheumy shook my hand, grasped
both shoulders and said , 'shazam!!! you're biomodified; you can stop taking methotrexate now' what joyful news that was.

as ramblin' jack once noted, "spent about two weeks in new orleans, never did see the light of day, never have been back" guess that's how it should be...can't go back.

note- two years later i asked him about stopping the mtx on that day, 'wasn't that a risk to my eyes?' he nodded and said yes, but 'i knew you'd feel better almost immediately getting off the mtx and you needed a boost; if the enbrel hadn't worked for you i'd have dealt with that as another issue.'

with all the newbies here, i don't think anyone of 'em gets a comprehensive view of the reality of the meds situation...so that's my five cents...wob.
keep shootin'
aB

Aloha Ben,

Thanks for writing this. I appreciate your point of view. I come from kind people, myself. Growing up, we did not go to church (I still have never been to church, per se), but my father would quote Dylan or Kerouc, along with Buddhist and Native American philosophy. He still does.

I'm glad that you finally found a good rheumatologist who actually helped you and that you were able to get off the MTX.

Life is hard, sometimes, no? Lately, I think that is the only unassailable truth, aside from death and taxes. But there's also good stuff there, too! Just gotta keep your eyes open to find it.

Take care,
~Moll

Ben,

Aloha! I enjoyed your post. I am dreamin of the day I can perhaps be on enbrel, etc. The pain is almost too much... not to mention the stiffness! Yikes! I'm at the point where I can't imagine a "normal" life.

It's great to a good story for some hope!

Aly

Aw Ben, it's been a long, long road, but I'm glad at least the Enbrel is keeping the flamethrowers out of the butt these days.

Live long and prosper.

Karen

Aloha Ben,

Haven't talked to you in a long time. How're things?
I'm sitting here on the Virginia peninsula tonight waiting for the nuisance of a storm Hannah. The rain bands started in earlier...I love watching storms-I hope this doesn't pass thru during the night.

We've been on some of the same meds it seems. Except instead of Enbrel, mine is Remicade. I hope the people that have not tried any of those will give them a try. It's not like you can't get off of them if you're not happy. I guess most people here will use a lot of the same things sooner or later. It's much better to get on the good ones before the damage sets in, I hope the new kids realize that. Luckily my first rheumy has been very good to work with. It took a while to find a decent primary care though. I think that was my problem. So if anyone out there is not happy with their primary care(especially if you are in a hmo or similar) get a new one. It can make a world of difference.

I hope you are doing well these days. It looks like you might be getting a little of the Hannah storm yourself. Does your garden need rain?

Take care and hugs , Wanda

Dude....been awhile since we saw an Airplane land in Times Square at BBKings! Glad to read your post, your history will help others, no doubt....
I too am still on Enbrel, for four years now, all good so far..

Peace, you of course ROCK my friend...will pm you....
Linc

Well, sounds like you have been in my medicine cabinet. I am so glad that the Enbrel has helped you so much. I have never found one that helps me. They have just made me sicker.

I am glad you wrote this. It is good for us all to see what each other deal with and it is all different.

I just knew the Remicade was going to be my salvation and it about did me in. Same way with the Humira. And the MTX. Now the dr. says "No more big guns" He said he got me in a downward spiral that he didn't think he could stop. (I didn't either) I am down to 7 mg. Prednisone, MSContin and Lortabs for breakthrough. I take Xanax for my Dystonia and for sleep.

Good to hear from you. We are getting ready for the big knee replacement here. (not me but my sweetie) I will be glad when this is over.

Pu Liki
Possi

G'Day Ben,

Many thanks for your very informative, (not un-)amusing, and absolutely true to (MY - almost, give or take!) life as well, post.

I'm sure many "newbies" will be amazed at the cocktail of meds so many of us here are/have been on.
I'm so glad Enbrel is your "miracle drug". It's not mine, unfortunately, nor is Humira, I fear, but I haven't given up hope - yet! (Wish my rheumy had told me to come off mtx as well....)

Best wishes, and here's to Enbrel helping you for many more years!

Sue

molly, aloha

i often comment in other places on other sites that for folks of my age there's a
continental divide between the people who began finding their voices in the civil rights
movement and those who just went the peace-nik/hippie route...we earlier-awakened
souls just have a harder edge; i think it's the unarmed combat factor( or rather WE
weren't armed).

gentle folk with iron fortitude and ice in the veins...afterall we've already seen everything.

i love dropping dylan and kantner and jagger and crosby allusions and word play into
my snippets...and hendrix, woody, neil young, david byrne et al.

thanks for your reply.

oh...and i had huge laugh the other day...i read over the junior high summer reading list
and discovered that On The Road by Kerouac was listed as non-fiction...i was gonna
write to the english department but then i realized that every word truly was the god's-honest truth...just some of the names were changed...met dean moriarty one night
many many years ago...'quick beats in an icey heart'

aly, aloha

in the midst of so much negativity at times i did want a positive message...
(that's why i put this on the main board this year instead of the biologicals forum)

there's a thing about meds...and it's the hardest lesson to learn...sometimes
less is more...and doctors just don't comprehend all the reality of the stuff the
prescribe- too many say take 3 a day for a med that works taking just one.

i checked your profile and i do hope you have luck with diagnosis and some
compassionate care along your road.

thanks