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

Hi everyone,

As you requested we have created a section in the forum for another age group that deals with spondylitis.

In the meantime we will keep an eye on the bandwidth just in case this new section has too much traffic.

james

THANK you so very much...alright 20-somethings, join in - this one is for you!!!

thank you james, thank you saa, you are dreamboats!!!! and loveys!!!

s.

Thank you for this! I really do appreciate it!

Thank you so much for starting this forum! You are amazing!

this is great! now i have a place where i can just flood with my 20 something problems and issues.

Yay! Thanks James. I love this message board and I love the SAA. Thanks for listening to and acting on our requests.

Yeah! Thank you

Mike, we have a few thirty-somethings that are cool enough to hang with us here too. My husband turns 30 next week, so obviously I can't discriminate too much. :P

im feeling a little lost. im 22yrws old and a couple months ago at wrk my ankly swelled after a coupke days resting it the pain and swelling got worse went to hospital and after they checked it wasnt a blood clot i was sent home a coupke days later my knee started to swell to yet again went to hospital and was sent home after 5weeks of agonising pain and no answers i was getting to breaking point my other leg was starting to swell the pain and stiffness has spead to my hips lower back hands and neck after 7weeks and barely able to walk i hit breaking point i was a mess somthing was crippling me and the hospital wouldnt help me i went to my gp crying and he ran a coupke blood text and x-rays i went bak a week later to be told i was ANA possitive this didnt measn much to me but my gp refered me to a rhematologist and i was immediately put onto predisolone after my secong visit with my rhemotologist the results where all in i have spondylitis now 4 months down the track and having to come off predisolone i am having no choice but to accet my illness no more predisolone and the pain i starting i have 3yr old so cant be crippled and althogh my partner works financially i cant not wrk atm we want another baby but that means no methotrexate and my rhemotogist wants me on it what are the other options are there many other 22yr olds with the same problems no one understand what i have the pain i live with everyday or the difficult decisions i need to make i feel so alone with this who knew it would be so hard to walk or get out of bed everyday

I am new to the whole as game and just started enbrel. It took over 5 years to diagnose me because the drs in idaho refuse to test young females for as. My father and brother both have as and along with that my entire family is swimming in autoimmune diseases. I'm trying to get tested for sjogrens as well. Most drs I have seen have confused my legit pain for hypochondria or a way to get drugs. I saw a specialist who refused to give me anything based on the fact that I have tattoos and piercings. My parents believed something was wrong with me and my father write an email to his rheumy because my dr would not give me a referral. This rheumy was kind enough to see me and he believes me. It has been a hard few years feeling like maybe the pain really isn't there and now I have a name for it and treatment. The only thing still bothering me is my fatigue. Anyone have advice on how to deal with my fatigue?

Angie in Boise
AS- indomethacin, enbrel, klonopin

Welcome, Angie! Glad you've finally found a doctor who will listen and treat you. It shouldn't have to be so hard.

Now that my Humira has kicked in, it deals with my fatigue for me, thankfully. Before it knocked out my fatigue though (as Enbrel hopefully will for you), I made sure to get a full 8 hours of sleep every night, took naps as needed and as able, and gave myself a good long while in the mornings to wake up before going anywhere. It's also good to pace yourself with any sort of strenuous activity, whether that's house-cleaning or physically active work. Take breaks, ask for help as needed, and break things down into smaller tasks.

Yesterday I saw my med manager and she suggested nuvigil/provigil to help with my chronic fatigue. I'm not so sure what I should do. Got any experience with those? I'm so lost and so tired I have created a little cave in my room and I have a hard time lea ving my bed. I also work 55 hours a week. I do go to bed at 8pm to wake up st 6am. So I am getting sleep but then I go home from work just to take a 3 hour nap then wake up for dinner, walk the dogs and back to bed.

just found this site, thanks. My 23 yr. old mildly autistic son was diag. almost 1 1/2 yrs, ago. It took almost that long to get that diag. Thank God he has little pain. Most all of his spine is already fused. We are trying chiro. again, also adding swimming (of sorts). Yesterday lab work showed anemia and low vit. D. He takes Baclofin, and advil as needed for pain. He also has chol.,H., B/P, diabetes. Anyone else have these comp.? Hope he will post himself soon. Thanks for the site. KevC's Mom

chiro may not be the best for someone with fused vertebrae - can someone else comment about this please?
Are you there Spenser? you know about fusion.......

I'm no expert but I'm sure I've read that chiro can be dangerous for fused spines as the new bone is quite brittle.

no chiros for fused. please see your rheumatologist new for appropriate treatment. also, low vit d needs to be addressed. many here take prescription strength.

come on over to the main forum for general information.

welcome all, prayers and peace, sequoia

Can A Person Havin Spondylitis ankylosing for over 40 years be cured..??

Saurav, you might experience remission, but there is no currently known cure for AS.

having one of them days where nothing in my head works and my body is having the same kinda day

grip in hand isnt there which is scarey
everything changes from day to day & i dunno what real any more

Sorry Chloe. I know Emmie (another 23-year-old like me) has been having some problems with grip too, though she hasn't been in the forums much lately. It is pretty scary, especially at our age. I hope that you get a diagnosis soon. At least for me, having a diagnosis made everything feel much more "real", where before I'd been prone to just thinking things were "in my head." That's never a good feeling to have, when something "in your head" hurts so darn much! I was diagnosed at age 21 and my symptoms began around age 17, so from reading your other thread in the main forum, it sounds like we're on a fairly similarly crappy timeline!

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!

Hey! I see this place doesn't get too much traffic, but figure it's nice to have some people to talk to. I am 24 years old (omg am I getting old!) Been playing around with the DX for 3 years now, I don't have the gene but bw, and a bizillion radiographs plus physical exam and family hx point to some kind of spondylitis. More atypical with the symptoms starting as hip pain progressing to more of the c-spine than L. also affecting shoulders, hands, jaw, etc...Unfortunately past the point of NSAIDS and sulfasalazine. Can't stomach tramadol or any other opiate-related drugs. And of course steroids can't be used long term. So, Humira is the drug of choice lol.

Unfortunately now you guys are going to have to deal with all my replies... sorry!

We're happy to deal with your replies! Make sure to pop in on the general forum too if you haven't already.

Is Humira effective for you? It was my first anti-TNF. I had an amazing 6 months of effectiveness from it. Just wish it lasted longer! Recently started Simponi and it seems to be beginning to kick in.

I'm sorry you can't handle opioids. I'm allergic to most that I've tried which is... inconvenient, to say the least. I was on Fioricet, a barbiturate, for quite a while with good luck. You might look into that route. It's usually prescribed for tension headaches, but worked well for my PsA pain. Just be aware that barbiturates make most hormonal birth control ineffective.

I'm so glad you found your way here! I'm always sorry to learn that someone else is suffering from one of these diseases, but glad to have another youngin' around the place.

Looking for some advice!
I've been on methotrexate for 6 weeks today, and I'm a bit concerned. Due to the fact that it's a form of "chemical therapy" some of the side effects are hair loss etc. I haven't noticed anything yet, but I'm absolutely terrified of the thought of having no hair! I'm taking folic acid every day as well as a "hair, skin & nails" supplement to try and avoid this horrid effect. Has anyone else experienced hair loss or am I being my normal, paranoid, self!?

While I have heard of some folks experiencing some hair loss with methotrexate at arthritis dosages, it's never been hair loss to the degree that it occurs when used for cancer treatment. Essentially they lose hair faster than they normally do, but don't go bald or anything. Even so, I don't know a great many people who have had hair loss as a result of this arthritis treatment. It sounds like you're doing what you can to avoid it! I don't know your gender, but I personally think that I (and other women) look gorgeous bald. A short buzz cut is one of my favorite looks that I've rocked.

Thanks, Mary!
I've always had thick, thick hair and the thought of having none was horrifying! I think it's just the perception of "chemo" that got me freaking out a bit! (I'm of the female gender, just by the way!) I think I'm going to keep on doing what I've been doing and hope for the best!

teehee ;0) i miss my buzz cut!

you and i would get along real well. just had to say it LOL

I miss mine too! Of course, I'm never buzzing it mid-winter ever again. I like having insulation for my head.

Thanks! I'm so glad to have found this forum! I'm not quite in my twenties yet, still 19, but I've been diagnosed with a.s. and suffer from severe and chronic pain. I was put on enbrel a few years ago but it's stopped working and combined with my fibromylsia the pain is debilitating and keeps me from having a life. I don't have any friends any more and i can rarely leave the house. When i do go some place i'm left feeling sicker and weaker than before and have to come home and crash for a another few weeks to gain my strength back. I have several other disorders that keep me fatigued and in pain, and none of them are curable-but can be treated.

Welcome Annie. I'm glad you've found this forum, but sorry you "qualify" to be here. I'm up with painsomnia right now so I'm not totally coherent, but wanted to go ahead and say hi. You should start a new thread on the main forum and introduce yourself there too. You've come across a great group of people; a group who have been one of my main sources of support since my diagnosis at 21 (disease onset age 17).

hello all
i have been diagnosed as AS 4 ys ago..
i am 29, and yeah this pain goes and gets back, on MTX,
i am not goin to give up,not now,not ever..that which doesnt kill you makes you stronger!

welcome anuj123. you will find many more folks to talk with on the general discussion forum. sometimes the 20-something club is not often visited.

come on over to the big forum and let us know your story.

glad you will never give up. a person after my own heart!!!!

peace out...

sequoia

I just found this and I'm so excited to talk to other people who understand what it's like to hear, "You MUST have had an injury because you're just too young to have hip/back/wherever pain like that!" on a regular basis. I'm also looking forward to learning more about the TNF-blockers as well as other natural therapies (in the other forums of course). Stay positive, my young friends!

tia, come on over to the main forum and tell us about your journey.

welcome. sequoia

I've had the same situation as you. Only in both my heels and ankles, it got so bad in my senior year of high school that I was forced into a wheel chair for just over a month. Not a doctor I went to had a clue what was going on until I seen a rhemotologist. He diagnosed me with AS in less than an hour. He started me on artho-tec 50mg twice a day along with a stomach pill. Since then my stomach is destroyed from the anti inflamitories. So now I'm on no medication to cope with my AS and it's in my back, hips, knees, ankles and shoulders now. If anyone on here could give me their advice to a kind of painkiller I should go with it'd be greatly appreciated

My 24 yo son was just diagnosed with AS. His symptoms started very suddenly, and seemed to migrate to various joints. Autoimmune diseases tend to run in our family & he tested positive for the gene. While they checked him for everything, & did xrays, it was finally decided by his rheum that this is what it is. His xrays were essentially neg (which was good as she says it shows no damage yet). He has been on 20mg daily of prednisone to help with the symptoms while waiting on the test results, which helped tremendously. So now he will start on a titration of sulfasalazine while weaning the pred. He will start PT a little later & he is probably going to be changing careers, as he currently is a machinist, lifting heavy parts & standing on concrete most of the night. What a life-changing experience!! He went from being apparently totally healthy to this!! It breaks my heart!! I'm glad I found this site, as I've already been researching. Fortunately, his daily pain is quite tolerable & I pray it will only get better. Any advice or help that anyone can offer us will be greatly appreciated! Our goal is to prevent any further damage & keep the pain at bay!

Hi Lmorto02! Sorry to hear about what your son is going through, but it's actually really good if he's gotten a dx so soon. Getting treatment early will definitely be a positive for him in the long term of this dx. There's not much traffic on this page lately, you may get more responses if you post on general discussion page. Welcome!

Hiii guys!
I havent been here in a while- been feeling fabulous- except for the pain in my feet mostly, but I can deal with that.

Unfortunately I had the worst flare OF MY LIFE last night. Attacked my spine and my ribcage. Could hardly breathe. Ended up in casualty and on a drip for pain.
First time that's ever happened to me. Normally I'm so strong and can deal with the pain, but last night ended with me in absolute tears. Thank heavens I still stay at home and my mom was with me the whole time.
Think I've taken a serious confidence knock. Thought I could deal with this infuriating disease and move on with my life. Now I'm too scared to go out and do anything in case I have another attack. Feeling super fragile today!

I'm sorry Lease. I hope that things get back to their former fabulousness and you're able to get on with life-as-usual. I hope that you're able to regain that confidence. While it's true that we can overdo it and cause flares, it's arguably more damaging to not do anything at all - it's so important to be active with these diseases.

Hi, my rheumy recently gave me a vague diagnosis of mild form of AS since my blood test for HLA-B27 was negative but revealed I have mild Crohn's disease as well. I still have lots of pain and increasingly losing flexibility in my low back and feel more stiffness/cracking in my neck.

My symptoms began five years ago, when I was 20 with low back pain out of nowhere. It wasn't bad at first but then got progressively worse, by 2010 it was really bad and continued to get worse. The pain was worse in the morning and hurt the worst when I sat or stood still for a while. Then in 2012 my neck began to hurt as well. MRI of lumbar showed arthritis and disc degeneration. MRI of my neck revealed bone spurs. I also have pain in the middle of my back and sharp pain in my chest sometimes. I also have pain in my perineum, genitals, hips, knees, heels, and sacrum. I feel my low back is getting stiffer and has lost its lumbar curve. Rheumy told me to keep taking NSAIDS and wait again till March to see him again. I want a definitive diagnosis and feel like he won't give me one due to the HLA-B27 negative test result. I've went through five years of hell and don't want to wait any longer for an answer. Can anyone please give me your thoughts. I've went to so many doctors and feel like I have nobody else to turn to. Thanks.

"A mild form of Ankylosing Spondylitis" is actually a pretty specific diagnosis. If he feels you meet the diagnostic criteria well enough to call it any sort of AS, that's pretty darn specific, as it's a pretty demanding set of criteria to meet. That being said, continuing to take NSAIDs and waiting 5 or 6 months to see him again isn't terribly helpful, unless NSAIDs are controlling your disease effectively.

Hi I'm Ron, recently diagnosed with beginning AS. Though I don't feel back pain now, my left knee is inflamed, and feel minor pain on both feet (esp. tendons) when walking / going up and down stairs.

My rheumatologist asked me to learn more about AS and these three specific biologics: Enbrel, Infliximab (Remicade / Remsima) and Simponi. I'm still reading up on the three, and I would like to ask for help in deciding which one should I pick. I'm partial to Infliximab because of the lesser number of treatments/shots in a year.

Any tips / suggestions / recommended reading are appreciated. Thanks!

Hi Ron. You will probably get more results if you post your question in a new thread rather than tacking it onto this long "welcome" thread. You may also get more responses if you post in the General Discussion section, since the Young Adults forum has been kind of quiet lately.

Keep in mind that infliximab is an infusion by IV instead of a shot, so even though you take it less often, the infusions take several hours each time.

I don't know how insurance works in the Philippines, but you should check with your insurance to find out the coverage for each medication.

Everyone is different, so there's no way to know how you will respond to the 3 choices you have been offered.