Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Test Results

My rheumatologist called yesterday with my latest tests results. My Vitamin D level is low, my CRP level & sed rate are high, and my X-rays show some new arthritis in my thumbs and left knee. She has ordered a chest X-ray and is planning to start me on Enbrel. Can anyone share any experiences they may have had on this drug. I am still playing the diagnosis game, but am pleased to hear that my lupus and RA tests came back negative. That means one step closer to a definite diagnosis.

I'm happy for you! Not because you have this disease, but it sounds like things are getting sorted out for you.

My vitamin D was low at 12 in recent tests...I don't remember the units. The doc put me on 50000units/week.

I don't know anything for Enbrel other than it wasn't an option for me because, I'm told, it doesn't provide a benefit for Ulcerative Colitis (my other devil).

I hope you get to feeling better soon, because you have kids to teach!

My doctor has prescribed 50000 units/week for me as well. I'm really hoping it helps with some of the muscle aches and pains I've been having lately. Not sure if it will, but I'm hoping it will give me an energy boost too. I've heard some really bad things about Ulcerative Colitis and I'm so sorry you have to battle that demon! I know it has to be hard to deal with that on top of all of this!! I'm sure it's no easy feat!!! I see that you're new to the site as well. I'm so glad to find a place where I can finally find some answers and talk to others who understand where I'm coming from. It's hard for my friends to understand because they're all mid 20s and 30s and in perfect health, I've learned to accept it and roll with the punches Anyway, I hope you enjoy your weekend-it's rainy and nasty in south GA right now so I'm just catching up on some much needed laundry duty. Talk to you soon!

Well, I won't tell you how nice the weather is here in California...ooops I just did. I passed through Georgia a couple of times on flights when my son was in bootcamp in South Carolina. I loved the southern hospitality. I miss breakfast at the Waffle House and the grits. I never had grits before those trips. The waitress explained to me that northerners eat grits with sweet syrup, etc. Southerners eat grits with butter and pepper. So, when she asked me how I wanted my grits I said, "with butter and pepper!"...she smiled.

That is too funny! My husband is frying fish and cooking grits as I type this. I assure you that I will be putting plenty of butter and pepper in mine!! It's hard to beat

i miss the hushpuppies! we lived in virginia for 5 years. had barbeque (pulled pork) with hushpuppies just about every friday night that i lived down there. 2 barbeque places between work and home to choose from. i did bring some hushpuppy mix up here when we moved, i should make some. up here, a few barbeque places but no hushpuppies, they just don't know.

have to admit, my favorite way to eat grits is with sourgum, sweet, but not too sweet. best grits i ever had were in a diner in oxford mississippi.

as for the low vitamin D. thought mine was low due to my inflammatory arthritis since so many people here seem to have low D. but a doctor i saw last week said its not uncommon for women's levels to drop as their hormone levels drop, so for me it could be due to the perimenopause. however, he also said at least this is one of those things that is easy to fix, its a cheap, easy to take, supplement with no real side effects. he believes everyone should take the supplement if their levels are even a little low. thinks it may just be important for all kinds of things we're only now starting to understand. he sold me on the idea. i've been taking the megadose prescription for quite some time now. i too was hoping it would make me feel better. it hasn't. but still i bet its protecting my bones and doing other behind the scenes things. think everything i try to tweak, keep hoping that will be the smoking gun, unfortunately learning not that simple.

Hi there, that does sound positive... which is completely weird to say when someone has elevated CRP and ESR, and is probably in pain.

Anway...

I just started Enbrel after 4.5 years on Remicade. I think the biggest thing for me has been the amount of energy I have on these meds. Pain levels going down is almost secondary to my mind, to the increased energy. Others have very different experiences, but mine have been almost completely positive. A few infections, but easily dealt with.

Keep asking questions and do your research. While you're on a biologic med, make sure you wash your hands in hot water with soap, or use a purell wash, prior to touching your eyes, ears, nose and mouth, and before eating. That will be your best defense against infection. Be aware that the biologic will impact the inflammation process. While that's great for AS, it's not so great in other medical areas. Last year, my sweetie had severe diverticulitis. Because the Enbrel was keeping it from getting inflamed, we didn't realize that his weight gain had nothing to do with the usual suspects and everything to do with diverticulitis until 5 months had gone by and he had a perforated colon. So, stay aware of things and don't let your doctors try to placate you if you have concerns that you might be ill but not presenting normally.

Not trying to scare you. This is really the only serious issue my sweetie has had. Just trying to be realistic about these wonder-drugs.

Hugs,

Kat,

I was wondering if it might be a good idea to take and record body temperature regularly as the biologics mask other signs like imflammation.

Something I stay away from is open food/snack dishes in the office.

John