Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Another newly diagnosed person

Hello to everyone out there. I am new to this, so please bear with me. I am still learning the ropes. I am a 26 year old female who was just diagnosed with AS in November of 2005. I have had a lot of problems since the age of 18, but I never did anything about it. It all started after I had been the the hospital for 10 days with pneumonia. Then the next thing you know, but left knee is swollen to the size of a grapefruit and full of fluid. The Dr said that I would have to have it drained, and I decided that I was not going to have that done and just pretty much ingnored the problem that I has having with my feet and other joints. Just this past October, I was at work and my knee completely gave out on me and I fell to the floor. I ended up going to an Orthapedic surgeon here in my hometown thinking that my problem was somehow related to injury. After an MRI showed nothing, I has arthroscopic surgery for them to tell me that nothing was wrong with my knee other than it was arthritis. After a 6 week check-up my Dr told me that I possible had AS and he was referring me to a rheumy. I went to see him at the end of November, and he took x-rays, blood work and asked a lot of questsion, he told me that I had AS. He put me on a medicine called Methotrexate and folic acid, but it does not seem to be helping. My knee is swollen like a grapefruit and the pain that I have is almost unbearable at times. I have this is my foot, my knee, hips and I also had to have an echiocardiogram done on my heart to see if I have a condition called valvulitis which is part of AS. I go back and see my rheumy on the 27th of this month, but I was hoping all of you out there might have some informtion for me. I have researched different things, but I don't get a lot of time for that since I work full time and am also a full time mom to three beautiful children ages 8, 2, and 1. Anyway....any information from anybody would be great. I look forward to hearing from you, and please feel free to e-mail me at any time.

Hello Gera, welcome to the site. I am sure you will find all the answers to your questions in here and you will find that there is a great bunch of people in here that will understand what you are going through.
I am also taking Methtrexate and folic acid as well as several other medications and I am sure your rheumy will be getting you to try others as not all meds work the same for everyone. Also keep in mind that medications like Methotrexate take a while to work (could be as long as 6 to 8 weeks). You may also want to check out the NSD (No Starch Diet) as others have had good luck reducing the symptoms with this or similar diets.
Dan

WELCOME, Gera:

I don't like MTX (methotrexate), since I have used it several times with little relief although minimal 'known' complications.

Your initial presentation was more like Reiter's, although your situation may have evolved by this time into AS.

Depending upon the person, a combination of diet and drugs can be much more effective, and the newer biologic DMARDs are superior, when they can be used in most cases, to the older, ham-fisted immune system poisons. I hope that you will check out the NSD Forum, and especially for your knee, I believe that the castor oil packs can help in your current situation.

Sorry You had to find us, but...glad to meet You,
John

Hi Gera,

I was diagnosed in November 2005 also. I took Voltaren for about 2 months (didn't really help) and then began Remicade (biologic drug) infusions in January 2006. I've had three so far with very nice results. I seem to peak a couple of weeks after an infusion and then deplete a week or so before the next. My rheumy is increasing the dose from 5 mg/kg to 8 mg/kg at my next infusion date (3/31/06), so that might help sustain the effect.

It was important to me to get on this drug quickly because not only can it make one more comfortable, but it can impede the progression.

Best of luck to you and see you around the site.

Gera,

Welcome to KickAS. I have never been on Methotrexate, so don't have any advice there. Just wanted to welcome you to the KickAS family and hope that you find some answers you need here. There are many areas here to look through. And several members who are either on, or have been on methotrexate that I'm sure will be of much better help than I could be.

Take care,
Pam

HI Gera,

Welcome to Kickas, hopefully you find the answers you are looking for here. I have no experience with methotrexate, so no help here.

There are many medications and alternatives to explore here... more you put into your personal reserach, the more you will benefit.

Tim

Welcome!
Check out our various sections of the site for relief, you can start doing things to relieve the pain and inflamation yourself, and then ask your doc about biologics like Enbrel...

Hope it helps, you have found a great site here for help and info!!

Peace
Linc

Hi and welcome,

I am 27 years old and had this thing for last 10. So we have something in common.
Have no kids but love to have some, hope you can fill me on your pregnancy, how you survived it?!
I am taking sulfasalazines and voltaren retard daily (this is not really smart, but it helps)

I am sure people here will fill you on the knee problems, I don’t have any of that kind, so no help from me

sanela

gera, welcome to KA!

I hope you will find some answers here that will help you make the decisions you need to make regarding your ongoing treatment. AS is frightening, we all know that. But the people here have, collectively, several centuries of experience dealing with it. You are not alone anymore.

Hugs,

Hi Gera,
Welcome to the forum. I am also newly diagnosed, just in January, the day after my 50th birthday. I'm waiting for a colonoscopy (kind of like the crazy guy on the TV commercial encouraging people to get a colonoscopy. He's inpatiently waiting for his turn and thanks everyone profusely when it's over). This disease does crazy things to you. I never thought that would be me! If everything goes OK with it, then I will start remicade. Although I was recently diagnosed, I have had problems for many years, and therefore have tried quite a few different meds, but not the methotrexate. Did you get the results back from your echocardiogram? I hope everything was normal.
Take care and good luck,
Wanda