Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Welcome to the 20-Something Club

hi i am new to this form.....dunno actually where to post it too
i m in relationship w a guy who has been suffering from AS since past 8 yrs....i love him so much n i cant see him in pain....i get to know he's in pain only when it gets severe coz he doesnot want me to b suffered .... lately his inflammation has flared up and is shifting from low back to sacro-iliac to ankle to jaw and affecting his flow of studies....his gait has become peculiar n he limps subtly so that noone wud know abt his problem...he complains to hav oesophageal spasms as it is he cant take long breaths during the spasms...but i strongly feel its bkz of the inflammation at costovertebral joints restricting his ribcage movement....he has frequent episodes of uevitis and self medicates by himself...during intial 3-4 yrs of d disease course,,,he had knee n elbow swellings subsequently followed by uveitis n glaucoma...then got tested n turned positive for HLA b27 +ve,, was diagnosed juvenile rheumatoid arthritis with enthesopathy....2-3 yrs back it got turned to AS affecting sacroiliac joints n few months back the inflammation has started so much that he's in pain 24 hrs...this makes me feel so helpless n hopeless as im aware of the fact that it has got no cure....even though i know wats goin on in his body actually , m unable to do anything for him n not able to relieve him of his pain.....i feel at times i am going into depression because these days i prefer being alone or with him only ...and get agitated at everyone ,, also have only negative thoughts about his health issues and what i will do without him! if theres anything that can be done to come off this feeling and feel good pls help me ! m feel so low these days !

Hi everyone,

New to the forums my name is Ivan. 22 years old diagnosed + HLA b27 2 years ago. I have had problems for a while though. I am quite stubborn, and badly dont want this to slow me down. Any others In the LA area?

Hi Dstern, I responded to your post in the "When I Grow Up" thread. You'll find you get better response if you start a new thread rather than reposting the same message to multiple unrelated threads. A title like "Son Tested HLA B27+" will draw out other parents/children who have been through the same thing, who might not otherwise check back in on an old thread. This question would probably get many good responses in the general forum, as I don't think it's anything particular to us youngins exactly. As someone around his age, I can maybe give insight on what he would like, but there are many parents who could help in the main forum too.

Hi everyone.

I was reading through everyones posts, seeing how most are so grateful to have finally found a forum where they can talk about and share their experiences with AS.

I got tears in my eyes.

I'm not alone.

I'm 23, and after 14 doctors and almost 3 years, I was finally diagnosed on Tuesday.
The relief at having a diagnosis was unbelievable. My mom, bless her, wasn't as happy. She feared the worst. She's my rock when it comes to support! However, after reading the pamphlets the rheumatologist gave me, shes determined to find a way to beat this! My dad, who has gone with me to every specialist I've gone to, has decided to also find alternative ways of treating this horrid monster called AS. I've realised how lucky I am to have such a strong support base.

Being a woman and fairly young, reading up on what AS can do is really very scary. I was prescribed Methotrexate. I decided to do some research on it and could feel the blood draining from my face as I read on. I wasn't happy at all. I called my GP and he told me that this is one of the most successfull ways of treatment. Called the rheumatologist and discussed my concerns, especially about fertility. I'm not in a relationship, but I don't want to take medication to heal one thing and have problems later on, if I ever want to have children! After talking it through, I've realised this is the best option for me- for now at least. (If anyone else has any info on MTX- I will be ever so grateful!)

Again, I just want to say how grateful I am that I've got a place to share my concerns, knowing that other people will be as understanding as I hope to be to them!

I hope that I can become part of this community and offer my support to those of you who need it!

Lease

Hi Lease. Sorry you have this, but glad you found us.

I didn't look into it in a big way because I was past the age of thinking about children - I don't recall seeing that MTX affected long term fertility, but other younger women may have looked into this more. The key thing is to not get pregnant within three months of taking MTX, which should be ok so long as you plan in advance. No room for unplanned pregnancy.

MTX really helped my hands and to a lesser extent my feet (peripheral AS), but didn't do anything for my spine etc (axial AS). I think it would be worth a try if you have significant peripheral symptoms, but I don't think there's any evidence to support its use on its own if your spine is the only area affected. Anti inflammatories (nsaids) are the first line treatment for axial disease. One of two people on the forum found MTX helped their axial symptoms but they are the exception.

Anyhow, good luck on this journey. It can sometimes take a while to get the right treatment plan as different things work for different people, but most people are able to manage their AS well so they can get on with their lives. Don't get too alarmed by the posts in this forum - the people that post to the forum are not representative - they tend to be the people with more severe symptoms or still working out what works for them.

oops just realised I'm overage for this particular forum. Hope you guys don't mind an oldie popping in to visit...

Shirley - you are only 25, second time around

Hi Lease! Welcome! This forum has carried me through the 2 years since my own diagnosis. Though I also have an extremely supportive husband and family, this forum offers valuable empathy, understanding, and experience. There's rarely a medical situation that I encounter with this disease that multiple people here haven't also experienced before. Despite only meeting a few people from the boards in real life (most of whom have attended local support group meetings), I feel I've made many friends here. I'm so glad you've found your way here too, and hope you get just as much out of it as I have.

It really depends on what symptoms you have as to whether or not it's true that methotrexate is one of the "most successful" forms of treatment. For axial disease (spine & sacroiliac joints), it frankly isn't. If like me, you have significant peripheral involvement, it can play a great role. I've never been on methotrexate specifically because the side effect profile isn't great alongside my gastrointestinal problems, but another Disease Modifying Anti-Rheumatic Drug (DMARD) called Plaquenil has helped me a lot with my peripheral symptoms. I've also tried Sulfasalazine (another DMARD) in the past. Unforunately DMARDS are not truly "disease modifying" for those of us with the spondyloarthropothies as they are for those with Rheumatoid Arthritis. They can still play an important role in treatment, but since they rarely work for axial inflammation, they aren't typically used alone. That's not to say it's wrong to start with methotrexate alone. Usually it's a good idea to add one thing at a time, so you can actually see what's working!

Thanks for the warm welcome and all the advice!

I started methotrexate last night, thinking I'd be able to sleep through some of the side effects that seem to come with it. OOPS!

I've been told that it affects people differently- some people have nausea for a bit, others a whole day and lucky ones have no side effects at all. Unfortunately for me, it's still lingering!

One good thing to come out of this is I ran into a colleague who upon talking to, also has AS! She was so lovely about it too- she was really understanding and has offered so much support!

It seems to me that the people who suffer with this horrid thing can sympathise and support each other like no one else. It's nice to know!