Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hey I'm New!

Hey y'all

I'm a total newbie here and I find myself with quite a few questions. Is there a "hey you're new, read this first" section on the forum? Like a FAQ or anything? I'd hate to bore all of y'all with my probably silly questions. Thoughts? Advice? Recs?

TIA!
Shannon

Please bore away, you will get fascinating answers and insights in respoinse, and humour tolerance and a smile here and there
...........

I see Allan got to you first !!

Welcome, tell us your story, amazing support and advice to follow!

Sherri

Hi Welcome to KA, I'm so sorry that you needed to look for us. If you follow the "Home" button, you will find a lot of information that might help you. Take your time and read through all the different folders, post when you feel like it. Tell us about your AS journey.

Hello, I'm new here too! Was up most of the night with the worst flare I ever had and stumbled on this site. The pred is starting to work and hope to get back on the Remicade soon, it did work well for me. There is more to learn here than in the Dr's office good luck Bill

hello shannon and bill

welcome!

Welcome, Shannon and Bill!!!

<wave-wave-wave> <--- since we don't have that cool waving smilie that Michelle had...hinthint to mods.

Hi Shannon and Bill.

I have only found this site recently and am glad that I have. great place to let your frustrations out and ask lots of questions.

Welcome
Cheers Carol

Thanks for the welcome guys!

Well my story is short. I had a baby in May. (a beautiful little girl!) About 3 weeks after giving birth I noticed that my feet were really hurting. All the time, but especially at night or when I'd been sitting for awhile and then got up. They hurt even more than they did when I was pregnant. I thought at first it was a post partum thing, but my OB checked out my electrolytes and all was fine. Then I thought I must be sitting funny while I nurse and that's pulling some kind of muscle or something. It was strange though, because I've always been able to sit crisscross applesauce without any issues at all. So after another month or two of my feet hurting, and now my hands were hurting I went to my regular doc. He checked me for all sorts of stuff and said, I don't know. The pain was still in my feets, hands and now my hips. Then I went to a bone & joint guy who did yet MORE tests and xrays and yadda yadda I have AS. I just got diagnosed 2 weeks ago, so I'm still processing. Here are some of my questions. The doctor didn't tell me squat, just gave me a brochure that basically scared the beejeezus out of me.

1. Will the cold/rain/humidity make me feel worse?

2. Do you hurt all the time, and then additionally have days that "flare" much worse, or do you have some days that hurt and some days that don't? (i bet that is a different for every person question)

3. Does anyone here take Simponi injections? Do they sting? My DH takes humira for Chron's and they hurt like a B according to him. I give him the injections so ..ya. ow.

4. What the heck is methotextrate (sp?) Some of the TFN brochures read something like "when taken with methotextrate" Does that mean the M is in the injection or is that something else I have to take in addition to the injection?

5. I asked my doc for exercise recommendations and he refused to say anything. I mean really, he said, I don't give exercise recommendations, find something you like to do and doesn't hurt you and do it. Sooooo helpful. So does anyone have anything SPECIFIC that you do? I like to walk, but it hurts my feet a good deal, even with foot inserts. I can swim in the summer, but it's Sept now so....thoughts?

6. My doc didn't say one word about diet, other than to tell me to not take calcium pills, but eat my calcium from regular food. But I see on here tons of stuff on low carb. Is there any research that backs that up or is it just well we tried it and it worked for me so you should try it too. (which is fine, I just wondered)

That's probably enough for now, right? I really appreciate everyone being so nice and even if you can only answer one of my questions it's more than I got from my doctor. Thanks guys.
Shannon

Hi Shannon,

I don't have AS - I have rheumatoid arthritis, although there are many similarities, both being an autoimmune inflammatory arthritis.

I can answer your question about methotrexate as that is the drug I take to control my RA. The drug has been around for a long time and is probably still the most commonly prescribed drug for inflammatory arthritis. It can be taken in pill form or by injection. I originally took it by mouth but began to develop quite severe nausea for a couple of days after taking it so switched to injecting it once a week which has significantly reduced the nausea problem.

Although methotrexate (mtx) is often taken on its own, it is commonly prescribed to take at the same time as one of the TNF drugs, like simponi and humira, because it appears to reduce the chances that the TNF will stop being effective or make the TNF more effective.

All the drugs used to treat inflammatory arthritis carry a degree of risk. Each individual has to balance the challenges of the arthritis against the risks of the treatment. In my case, I would be disabled by now if I wasn't taking mtx. You will no doubt learn all about the different treatments, their risks, their benefits and their effectiveness.

You will find different members on KA often hold quite strong views about the various available treatments. Some members hate mtx and will tell you not to take it, others fear the risks of TNFs; some will swear by a particular treatment because it has worked so well for them. I believe all these views, both positive and negative, are valid because they reflect the experiences and beliefs of the many individuals who contribute to KA. My recommendation is that you do the maximum research you can, both on KA and on other sites, talk to your doctors and make the best decisions you can for yourself. Stay hopeful, treatment is improving all the time as new research develops fresh understanding about autoimmune illnesses.

The best of luck to you.