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

Kotte,

I have felt all of the things the others have described. Until I went on Enbrel (about a year ago), I had FLARES. My flares consisted of back pains that halted my movement and walking. I also experienced flu-like sysmptoms that further exacerbated my situation.

I have been on Celebrex (2X 200mg daily), elavil (25mg) at night and Enbrel twice a week and I have never felt better. I no longer wake up in the middle of the night and have to spend 10 mins turning or getting out of bed. My daughter no longer has to help me out of bed in the mornings. I can pick up my 7 yr old boy and kiss him. This "cocktail" has worked for me. Good luck to you!!

Holly

Holly...have you noticed any weight gain with Celebrex? Or possibly fatigue? I just stopped taking Vioxx (25mg) because I suspected that is why I could not lose this little weight gain I had, and sure enough, I lost 4 pounds in 4 days. I also did not get the woozy sleepies around 1pm every day (I always took it at around 9am)....It's been 6 days, tho, and BOY am I ALOT stiffer. And my knee is swollen, my iritis is flaring slightly, and overall, I feel like crap. Obviously, I need something. But I'm also on Celexa and last spring when I started on these two meds, I gained 8 pounds in a week..... so not fair, to have to choose between gaining weight, extra fatigue (besides what we already have to deal with) or feeling better. I also have kids, an 8, 5, and 4 yr old. So that's why I'm looking into Celebrex.

Hi all!

Thanks for the inputs!

I'm getting convinced that AS is a creature which can take many different disguises.

One could wish that the information available on AS, on the net and otherwise, could be more thorough. As an example, the number of people with AS i Sweden is approximately 40000, and the number of people with Rheumatoid arthritis is approx. between 45000-80000, but the information about AS isn't even comparable to that available about RA.

Thanks again

/Mattias

Kotte, your post got me wondering about the numbers in Canada. Here, about 300,000 people have RA (1 in 100), while 150,000 to 300,000 people (about 1 in 100) have AS. That's according to the Arthritis Society website. It kind of makes me wonder. AS is considered rare, and yet there are, potentially anyway, the same number of people with AS as RA. So, why is it that the medical community knows so much less about AS than it does RA?

In answer to your original question, I'm always in a certain amount of pain, even since starting vioxx, tylenol arthritis and celexa. For me, a flare is when the pain gets worse. We're on the lookout now for a secondary reason for my pain, as the vioxx is defintely dealing with the inflammation.

Hugs,

Kat

"Bechterews sjukdom är en kronisk inflammatorisk sjukdom.
Inflammationen drabbar framför allt vävnader som muskelfästen
och leder, till exempel i ryggraden. Sjukdomen börjar ofta med en
smygande värk i nedre delen av ryggen eller i skinkorna, särskilt på
morgonen. Efter något år med sjukdomen blir värken mer
ihållande och i sena stadier av sjukdomen kan de inflammerade
vävnaderna ombildas till ben. Det kan leda till stelhet och långvarig
smärta. Det går inte att bota sjukdomen, men smärtan och
stelheten kan både lindras och förhindras med hjälp av mediciner
och fysisk träning, särskilt i ett tidigt skede av sjukdomen. Därför är
det viktigt att man får diagnosen så tidigt som möjligt."

OK, dopey me, I click on the link and, OF COURSE, it's in Swedish. Why would I think otherwise, really?

So, I picked up something about inflammatory disease/syndrome, joint or muscle lining (muskelfasten?), stiffness in the morning (sarskilt pa morgonen?)?

Sorry, I'm not making light, just laughing at myself a little.

Hugs,



Kat

constant flares are the way i would descibe my AS also.
some days are just better than the last. i gave up hoping for a good day and just take them as they come. each day will have it own pain or no pain. i find that the way i sleep affects the
coming day. if i wake in pain especially in the neck region the day is going to be a painful
and pain med day.
if i wake with no pain in the neck i will be in pain no later than three o'clock in the afternoon.
no ifs and or buts about it the pain is here to stay.
remicade has given me the most relief so far. my hands are actually shrinking to where i can
see creases in them and the knuckles are smaller than they where.
still have real problems walking as my hips are so sore that i just want to stand all the sime but i can hardley hold my weight for more than 5 minutes.
my rummy says that i actually look human although i feel somewhat less than that.
has the remicade affected you in a good way?
i seem to have no side effects from remicade at all. although i can tell after about four weeks
it seems to wear off somewhat. affects from remicade seem to be real as my knuckles do not
swell up after the remicade wears off.
at least it's nice to have someplace to come to like kickas where there are people that do know the problems we all suffer from. got some real nice responces to some of my questions here. also i see that there are a considerable number of people from canada here, and that makes me wonder if climate plays an important part in this affliction. i know that when barometric pressure changes either up or down my flares are worse. i consider any pain or swelling of any part of my body a flare.
sorry to ramble on so.
good luck to you my friend,
john heffernan

Hi John

Ramble on, thats the whole idea with this site .

As Nina pointed out earlier in this thread, Remicade worked wonders for me. No side-effects and ALL pain (more or less) went out the window and never came back, yet (touch wood). But it seems to be a common story with these new biological drugs, that their effect fades out after a while.

I feel my movement in spine and neck slowly coming back, and I can begin to make my exercises again in a more effective way. I don't think the tiny movements i tried in the exercises before my remicade treatment made much good. I couldn't lie down either on back or belly and the pain prohibited any efforts to fully work the joints.

The remaining big problem for me now is my TMJ (jaw joint). Both sides seem to be completely ruined, which has led to severe restriction in my jaw movement.

When still on the subject of Remicade. I just read that the Remicade didn't work if the patient was HLA-B27 negative (5% of AS are HLA-B27 neg).

And speaking of climate, we had a splendid spring day today. It's days like this that (almost) make it worth while to live in the black pit that is Sweden in the winter (Stockholm is almost at the same latitude as Anchorage, Alaska).

regards

/Mattias

The figures I found regarding Sweden was that 0.45% of Sweden's population has AS and between 0.5-1.0% has RA.

Hope you find out how to get rid of your pain.

/Mattias