Hello everybody,

How are you feeling today?

I am 31-year-old male diagnosed with AS a few weeks ago.

Last year I started having severe pain in my sternum then a swelling the size of an egg appeared on my chest. No other symptoms.

I was sure it was cancer and went straight to the oncology hospital but after a CT scan I was told it was Tietze syndrome and ankylosing spondylitis.

Immediately I went back home and tried suicide by suffocation and passed out several times but kept regaining consciousness no matter how hard I tried.

Eventually I gave up. My brain just refuses to die at this point.

I developed monster pain right in the middle of the spine every day every night every morning every evening, unrelenting inflammation.

I started taking up to six tablets of Ibuprofen (over 2600mg) and no relief.

My CT scan showed sacroiliitis and intervertebral disk degeneration.

I was prescribed Humira and I am scared because I read about serious side effects like tuberculosis and cancer.

My AS is not as severe now but I know it's only temporary and there is no cure I've lost all hope and I want to die.

No one believes in my diagnosis everyone says "you look great, so handsome and fit!"

My GP sent me to a psychatrist and they diagnosed me with hypochondriasis. Months later I made them apologize after I showed them the CT scan results.

My family including my own mother still refuse to accept the diagnosis and said I was having back pain because of the weather.

What can I expect from Humira and where to inject? They only have pre-filled syringe here.

I am scared, I used to do a lot of sports now I am tired all the time and can hardly go to the shop.

Doesn't matter whether your family accept the diagnosis as long as you do. Accept it, treat the disease with as much contempt as you can muster then get on with your life. AS is for life but not instead of life! Things get better. Make AS a smaaaaaaal part of your life. Yes it hurts but you will cope.

No more dying please and I think I am better looking thewn you.....ahaaaa so there....lol


Best Christmas wishes to you

Hi- so sorry you are having a rough time with your AS. We can help you get through this rough time because we all understand what you are dealing with. The first thing you need to do is dump any doctor that is not helping you. Have had a few of those docs myself and learned throughout the years not to waste my time or money.

I have been on and off biologics for 10 years. I look at it this way, if I get cancer or TB, it was worth it . I want quality of life. I always inject in my stomach because it hurts less there and I don't get any skin reactions injecting in my stomach. Used to get horrible bumpy itchy rashes on my legs. I am petite and don't have much fat on my legs. Doc tells me to inject into fat.

In terms of family, mine is the same way except for my sister because she got AS a few years after I got it. Sometimes I try to explain to family or friends the meds I am on and how the disease affects my daily life and they look confused and say "but you don't look sick" or "why don't you work full-time". I think some people don't know how to be sympathetic . If your Mom could go with you to see your Rheumy, your doc can educate her and she would have a better understanding. She could be in denial as her way of coping too. Just come here often because we all understand.

In terms of what to expect with Humira, some of us get relief after the first shot, some of us it takes 3 months to work and sometimes a biologic is not tolerated or it doesn't work. I think it is worth a try if you feel your other meds are not doing the job.

Please keep us posted and let us know how you are doing.

Shari

I hope you will learn to endure life with it. Im in methotrexate for 7 years now and i have been okay for the most of it. Been doing the LSD lately. No significant effect yet but im willing to wait. Just hold on! We can do this together.

WELCOME, dmx07:

Regret You have AS, but very happy You have found us; there is no better place to eliminate Your AS!

Humira is a very good drug when it is tolerated, and I hope You have great results. However, although it does not address the cause of this disease, it can give You the relief to work on this aspect.

Now I would slap You around a little over trying to check out ("You realize that suicide's a criminal offense. In less enlightened times they'd have hung you for it"--George Spiggott; aka The Devil). I was a little younger than Yourself now when I considered this and wish everyone with AS would just try starving themselves (but still drink water)--discover early how food is our worst enemy by getting into remission this way--the natural way.

The truth is, what we think about going on to a 'better place' or 'being out of pain' may not be reality and all I want to say about this is to suppose that we get AS for an important reason in this life: Why would we think we would be free of this obligation in the next life or even pain-free in some kind of oblivion? What dreams may come?!

You have a much better life ahead of You and the best opportunity now to make AS a minor inconvenience instead of a career of pain and disfigurement. Study the cause and best treatments here and get back on Your life path.

I wish You much renewed HEALTH,
John

Wow, I didn't expect so many replies so quickly thanks guys.

I am willing to give Humira a try, I fully realize it's an expensive drug and that a lot of effort was put into its development and subsequent trials.

Young doctors can be pretty cruel and cold at times but I don't take it personally.

To be honest some doctors look more miserable and ill than their AS patients.

BTW I got some new test results today, I am positive for the HLA-B27 gene.

I have been living with asthma for 30 years now and have severe pollen allegy.

Last summer I developed allergic keratoconjunctivitis that damaged corneas in both eyes I started seeing double, seeing halos around lights my eyes dried up so bad I had to put four types of artifical tears every 10 minutes one ontop of the other.

I became completely housebound and all I was doing was keeping my eyes moist to prevent corneal melt.

Doctors said they haven't seen eyes so dry.

I put steroid drops and my intraocular pressure went silently to 30 mmHg so I was diagnosed with glaucoma.

I also have posterior subcapsular cataracts and lattice degeneration.

My father died from a rare type of Non-Hodgkin lymphoma called Precursor T-cell Lymphoblastic Lymphoma, very aggressive type of cancer.

Both my parents had allergies as kids and my sister is currently on sublingual immunotherapy to help her with severe pollen allergy.

Life has lost all meaning psychologically I died months ago.

Dmx07,
I'm sorry to hear that you’re suffering at the moment.
I too suffer from A.S, have done for over 25 years. I have also been taking Anti TNF meds for around 10 of them. Now onto my 3rd one (Simponi), have also tried Humira. Had good results from that for around 3 years.
I too suffer from an eye condition for around 5 years now, seen numerous specialists. Suffer from dry eyes, have all my tear ducts plugged. Need to apply artificial tears around every 15 minutes or so.
I also suffer from severe photophobia within my right eye, have to wear cat 4 dark wrap around glasses, both indoors & out, all of the time. Have done so for around 5 years now, after an initial iritis flare. I also have a cataract within my right eye, which I soon swill be having replaced with a new lense. Waited 5 years for the operation, have had lot of ups & downs with Ophthalmologists.
Once you have gained some pain control, things will seem better in the long term. You now have a diagnosis for your A.S. Which is real. No matter, what anyone else thinks.
I now work part time, due to my health. Had a career change around 6 years ago. Really love my job now, keeps me going. No matter how I feel. I always manage to get there.
Take care, keep fighting.
Best wishes.

sorry you've had such a rough time of it.

i've been on humira since june 2013 and its been a godsend.

they will test you for tb beforehand and so long as you don't already have latent tb, you don't really need to worry about that.

as for cancer, again, unless it runs in your family, i think the chances of getting it is rare.

i still have a very robust immune system, even on humira, maybe too robust!

my rheumy thinks that if you are taking care of yourself, doing all the good things to boost your immune system, then the biologics shouldn't lower it too much. we're gonna check the white blood cells and make sure they are OK, but really, my immune system has been fine on humira.

yeh, pain is a scary lonely place, but this place makes it a little less scary, and a lot less lonely.

i still flare on humira, in a flare right now, but the humira makes the flares much more tolerable. every little bit helps.

good to meet you

Same here, we are going to do this for the rest of our miserable lives. At least I grew a new cornea and I am no longer seeing double.

Constant inflamation is high risk for cancer of the immune and cardiovascular disease so Humira not only helps with AS but some doctors say it protects your heart and reduces cancer risk.

Unfortunately I had a PET scan, CT scan and dozens of X-rays, they bombarded my body with radiation, dgamma rays are the worst they damage your DNA beyond repair.

Retina, brain, heart - all suffer damage.

I begged the doctors not to irradiate me but they said it was the only way I could get Humira.

Hello DMX,

Glad you found Kickas, good place for support and sounds as if you need some.

I was very depressed and had thoughts about suicide many years ago now, I had to get myself checked in to hospital otherwise I was worried what I may do to myself.

I am in much better times now, found some things that work for me... first I had some medications and now I use mostly No Starch Diet for my AS.

Hopefully you can find some things that work for you as well between medications, alternatives and diet. There is a lot you can learn that may help you.

Keep your head up and take one day at a time. That is how I did it when I was in a dark spot.

Tim

Hello Tim,

Thanks for the welcome, yes I need help that's the main reason I decided to join this community, I am humbled by all the support you guys have given me.

What do you mean by alternatives?

I used to take large quantities of Omega 3 and it helped but after several months it started to affect my heart rate.

Omega 3 can lower your heart rate especially if you take hefty doses every day.

That's what I did until my heart rate dropped below 50, then down to 40 during the day and remained low even after exercise.

Below 40 it starts to get very scary and whole body starts to suffer so I had to stop.

Hey DMX,

I was in the exact same boat, pretty much. Strong family history of cancer. Specifically lymphoma.

I was in a ton of pain, couldn't play sports, couldn't eat, sleep, sit, stand...In my case, a back-pain free life with a potential risk of future cancer was a better option than what I had.

Hopped on enbrel and had my life back within a week. I got iritis a few times over the 3 years I was on enbrel. In order to control both conditions, I was told to change to Humira a few months ago. So far, so good. I'm able to play hockey two times a week. Therefor, I can do most everything physically but I choose to avoid joint jarring, stop and start sports like basketball, squash, tennis etc.

All of my blood tests(once every two months) have come back in the ideal range since starting.


DragonSlayer has it right, though. If you decide to use Humira, it makes sense to use it as a temporary crutch if possible. Get your inflammation down, get some sleep, stay on this site to figure out what works for you and how to manage and eventually smash this condition.

I'm always trying to push back my injection intervals to see how progress is coming along.

Generic biologic medicine is getting way less expensive(80% cheaper) and new similar medicines in the works looks really promising!

Nice work on getting an apology from your Doctor!

In certain situations, I find it easier on myself and others to just say I have a "bad back" or a "slipped disc."

Even after self injecting enbrel for 3 years, I still found this video helpful before my first shot of humira.
https://www.youtube.com/watch?v=QgcYmoyVIYg

Just let me know if there's anything I can do for you. Good luck DMX and stay in touch.

Hi man,

It feels so good to finally be able to communicate with people who understand what I am talking about although we are total strangers we are facing same issues in life, same fears even....fear of the unknown and how this disease will evolve.

I am not sure I will be able to cope with any more pain if it decides to get severe in the future.

It's worse than cancer pain and it's constant.

I want to start Humira so that I can at least take one more normal breath before croak and lyind down in the grave to melt.

As well as back pain I have chest pain so I am double crushed I feel like the chicken in KFC burger.

Hello Dmx,

Yes, talking about fish oil, flax oil, ginger, garlic, probiotics etc...

There is a lot to learn about for alternatives that people use to treat their AS as well, some of which may help you.

For alternatives I take probiotics (mostly eat "real" sauerkraut now) and I also fast 1 day a week typically.

I took one year to do a lot of reading on nutrition, alternatives and more... it has helped me quite a bit.

Best to you

Tim

That's amazing, one year wow. You could complete a PhD on AS.

Of all the alternative you mentioned which one do you think helps the most?

I am desperate to try something that will ease my suffering. THX

im sorry that you are having so much trouble. i too have struggled with the will to go on. but i just think of my daughter and i know i have to do it. i also sympathize with difficulty getting people to understand and believe your sick and how bad it really is. i read somewhere that people with our condition have a higher rate of depression and i sometimes wonder if that might have something to do with it. You just have to find your thing. the thing to look forward to. the thing that keeps you going!

as for humira I've been on it for about 3 months. my AS is complicated with severe knee swelling and i will say that humira was the only med that lowered the swelling, and allowed me to walk without a cane most of the time. for the first month and a half i got the shakes for about 12-24 hours after i injected. since then no more shakes and the most common reaction i have is a little redness and swelling around the injection site. the only other noticeable side effect is i do bleed a little more when cut, and takes a bit longer to heal. it is definitely worth a try! good luck!

Dear DMX,
Sorry to hear about your AS and even more sorry to hear about your suicide attempt. I will pray and offer up something for you(catholic way of praying)

Dragonslayer is right, you can get better with diet.My labs and symptoms have improved Drastically over the past two years due to change in diet. It improved my sternum pain and si joint pain. It even improved my swollen knees, that were swollen for over to year. It made a frozen joint unfrozen after two years of not being able to straighten it.Starchy food really causes me and other people pain, it is the root cause of your pain, no joke. Just eat salad with chicken for the next two weeks and you will notice your pain going down, it will encourage you to keeep with the diet.
I tried Humira too, but I had tuberculosis as a child so I stopped taking it and I felt worse on it anyway. I was glad I felt worse, it was easy to drop it that way.

Make a list of five recipes that do not have starchy foods and keep that stuff on hand , throw out breads, pastas, cakes and cookies. If you need sweets try a soda or hard candy or dark chocolate, it does not hurt me as bad as that starchy stuff.

Our body will heal itself if we feed it good fruits and vegetables.Just like if you scrape your arm, you do nothing but stay out of the way and let your arm heal. If we stop poisoning ourselves with processed junk food, we can get better, we can heal from the inside out.
My sed rate(inflammation marker) went from 65 to 19 in two years after I changed my diet, it improved my anemia too, I am not anemic anymore.

Take care, I hope you try the NSD.

Thanks for your replies and support SeritaV and ValsMum.

I went without food for a week and drank only water and was rid of AS symptoms for a while so diet does work I have no idea how and why.

However I felt so weak and exhausted I literally had to drag myself out of bed in the morning. I resumed normal diet and the pain returned within hours.

I was a sports junkee when AS altered my life in my late teens and early 20's. It took time to redefine what my priorities were and what gave me joy

It took time to find the things that cut back the pain. That was almosy 40 years ago. Pain was so baf so many days it was literally hard to thimk at times. It hurt so bad thay the thought of walking across a 12 by 12 room filled me with terror

Now I run my own business. I havr aersome children and a great wife. These things seemed impossible all those years ago. Back then most days tomorrow seemed impossible

Give yourself time. Hppe may seem foolish on days where your paon is unbearable and you feel alone,but know you ateMOT alone. Thousands of us battle like you and inch by inch we win this battle. Good folks come hsre anf care.

And folks who aren't so tough to the human eye conquer this thing with amazing dignity. Yoi can do it too

So does the pain subside with time or you get used to it?

I am happy for you man hope you live a long life and your kids don't get AS.

I feel alone with my pain sometimes yes but I come here and read your comments and they give me hope that one day doctors will find a gene therapy and kick AS in the past.

I do not have PHD... just did all the reading on my own.

I do have a degree from University, but it is in accounting and that does not help with battling AS

Fasting and probiotics are the 2 items that help me the most, I have continued both with moving to Argentina. I do not supplement with fish/flax oil any longer as too expensive.

For probiotics I typically eat sauerkraut now, less expensive than supplements.

I fast either with apples or only water every Thursday. On occasion will do for 2-3 days.

If you have success with fasting, try looking at elimination diet with bringing foods back to see if that helps. If you had no pain with water fast, tells me the AS is tied to the intestines in your case like mine is most likely.

Best to you, hang in there.

Tim

Thanks Tim, yes no food only water makes a big difference but I can only do it for up to a week. I haven't tried probiotics. How are you doing now?

I too am 31 years old. I was diagnosed with AS in the fall of 2010 I have been on Humira ever since. I had back and hip pain on and off since I was a young teenager that slowly got worse as I got older.

It took several years for doctors to diagnose me. I was very depressed at the time because I could hardly move at times. I couldn't lay, sit, or stand for more that a few minuets at a time without lots of pain. I also had the horrible sternum pain with a large bump(I was horrified of sneezing).

I was worried at first about being on a drug long-term but it honestly gave me my active life back.

The one thing I remember most is a few days after my first injection I was able to play basketball with my brothers and uncles on thanksgiving. It had been several years since I was able to play like that.

I have been on Humira for 4 years now and cant imagine life without it. I still don't like the idea of being on medication all the time though.

I am able to go three to four weeks now without an injection when I modify my diet and follow the low starch diet, which is basically a paleo style diet.

I also stay as active as I can, which always makes me feel better. Including resistance training, jogging, and flexibility training.

At times I forget that I even have AS. I feel like Humira has done an awesome job with me.

The one thing that always gets me through any states of depression or flares is that:
I have AS, AS doesn't have me.

I think I read that on this site somewhere when I first was diagnosed and it has always stuck with me.

Life with AS will get better. Just pay attention to your body and diet.

I am very grateful for Humira and that it works well with me. I hope it does the same for you. It is worth trying if your insurance will cover it.

I hope all goes well with you and you get your spirits up.

And remember: You have AS, AS doesn't have you!

Hi Kevin,

Thanks for your reply.

Humira is my only hope for now sounds really amazing what it has done for you playing basketball and being active, wow.

I am happy if I take a walk for 2 hours and come home relatively pain free.

I had a hard time bending at the supermarket today to lift the basket I feel like I am 90 yo.

BTW where do you inject your Humira?

Hi there. I always like to say there is one medical "law" and that is everyone is wired differently and can react differently to drugs, procedures and anything else that comes our way. When you hear the word "cure" for AS run away as fast as possible
I was on Humira for 5 months and didn't notice any difference so I stopped. Others had great results almost immediately so that is fantastic.
I have just recently tried Enbrel and after 3 weeks I had too many side effects I quit and cannot go back to it.
I might try Remicade next and see what happens, not sure. I was told each biologic is produced a little differently so the results can be different.
Some people here have tried 5 biologics.

Hello and happy new year!

From day one I was perfectly aware that there is no cure for AS so that's why I tried suicide but as I said I couldn't do it

My only hope is that I croak peacefully (somehow) in 2015 aged just 32.

I am already a medical cadaver, I wake up tired and stiff no desire to live at all I can't perform any movement when I am in pain.

AS causes a life of pain, doctors know it patients are often in denial and hope for a cure.

AS may not kill you right away but causes poor quality of life and some like myself prefer to die rather drag around like zombies.

Oh please. I hate to hear that.

There is no cure for AS but that is only one of many diseases that there isn't a cure for. I am very very tired of this extreme pain and not being able to walk through the grocery store or even from one room to the next but oh, give me another sunrise, another bird singing, a hug from my grandchildren, the baby wanting to go to the "cookie corner" in the kitchen and my husband telling me how much he loves me. I will wake up in pain and stiff and fatigued forever for one more minute of a smile or a call from a friend or a hymn at church.

There is a lot of good in this world. I hope you find just a tiny bit of it when you open your eyes tomorrow.

Many blessings.

Hello Possi, sweet reply thanks

How long since you were diagnosed amazing that you find so many things to live for despite knowing AS is incurable.

Does the inflamation subside somewhat with time?

I secretly hope there will be new advances in medicine in the next ten years and better treatment, I get tummy ache from NSAIDs and other side effects.

My rheumatologist wanted to encourage me that it will get better with time...you are right that I need to find something to live for even if it is false hope the doctors are giving me.

Hello! These meds have dramatically improved the quality of life for many KA members. There are additional even more promising meds in both research and recently approved. Likewise, there are AS patients who fear the potential side effects of these meds therefore choose not to take them which is understandably a difficult decision. I think one needs to make a conscious decision that yes, you may be choosing QUALITY of life over QUANTITY of life and if you choose QUALITY--go at life with a gusto! Appreciate everything, and do as much as you can! This New Year make a list of all the things you want to do, places you want to see, and goals you want to reach. Refresh that list continually as you adjust to limitations AS may influence.

There's still plenty to do and see on earth even with limitations. Focus on getting your pain and inflammation under control by whatever combination of solutions others have used here (meds, diet, exercise, pain management, meditation, spirituality, etc.). Best wishes to you and make 2015 the year you tame the Ankylosaurus!

hola

I really hope you are finding those things to live for.

I have been doing this most of my life. Started with what they thought was rheumatic fevers during the summers of my childhood with weird rashes, fevers, aches and pains. Finally was diagnosed with RA as a child. That was followed by Fibro in my 20's and by the time I was 30, they added MS. In a few years, they dropped the MS and I had a definite diagnosis through UCLA Med Center of Systemic Lupus and Ankylosing Spondylitis. The Lupus has affected all most every part of my body at one time or another and several parts at once at times. Between the RA and AS, they just fight to see which can hand out the most misery.

I have had steroids most of my life and almost every Biologic.
I cannot take any of them any more so we are just going for quality of life.

I had heart surgery 4 years ago that didn't heal because of so many steroids. I had spine surgery a year or two ago that didn't heal for the same reason. I have lots of plates, wires and screws in my body.

I need a really big surgery with plates and rods, etc. on both the front and back of my spine plus another surgery for a double scoliosis where my spine is collapsing. The surgeons say that it would take all day and then it would never help my pain so we aren't going there. Besides it probably wouldn't heal.

I love all things outdoors. I am struggling to garden any more. I have seen this coming so I have been planting perennials, rose bushes, flowering shrubs and things that reseed. I hire a teen across the street to pull weeds. Helps me and gives him a quarter in his pocket.

I love being in church and when I can't I get comfortable for live streaming.

I enjoy our children and grandchildren so much and now we have a great grandson to dote on. Thus, the "cookie corner" I have a puzzle on the dining table and oil paints on the kitchen bar. There are books all over the house along with phones, I-pads, computers and any other way I can stay in touch with people.

I use a "highly decorated" walking cane. My grand daughters re-decorated for me over the holidays. I have a walker that is doing me a lot of good right now and I also have a wheel chair. Just use what you have to when you have to.

Standing to cook is my hardest thing. Hubby and I worked together today and made a huge pan of enchiladas. I can scoot around sitting on the walker pretty fast.

Oh, as to how long I have been doing this. I am 71 1/2 I need everyone cheering me on that I can get.

My inflammation has NOT gotten better through the years but you may well be in the generation that sees a cure. I hope so. Even if you don't, there is so much good in this life.
You were so good for me tonight when I read you post. You can help so many people.

Please don't give up! Come back soon. Let me know how you are.

Blessings.

Despite the difficult times and hard decisions you had to make I think looking at the big picture your body is utterly amazing being able to fight off the faulty genes and not get cancer from the constant inflamation.

So there are definately good genes in you

I've been living with asthma for 30 years now.

It was so severe when I was a kid that I was in hospital year-round. Doctors called my parents to the hospital one day and told them "there is no hope for this boy he can't live much longer with this condition". I heard them say this, I was in the corridor.

Relatives and classmates started coming in to say goodbye, everyone was basically getting ready for my funeral.

Slowly, I got better and by age 18 I was enjoying sports no different from other boys, even had more stamina than some of the other guys I used to compete with.

Life was good!

I had excellent grades in university and my parents were happy and proud.

But happiness is so transient.

After beating asthma I now get AS about ten years later and I am back in hospital.



Sad story at least I had ten "normal" years disease free.

So, what are you cooking today do you cook for the entire family?

My grandmother is 86, she has severe spinal damage her back is bent in a horrific position but not from AS.

She developed kyphosis after a fall in which she suffered broken ribs and concussion.

Years after she still complains of occassional back pain.

Before my AS I was often asking myself how is this possible, poor woman how can her back deform so much and give her so much pain.

Now I know.

Yet, like you she is still happy and doesn't want to go to grave. She is social, does her own shopping and goes out with friends when the weather is good. :))

How was the enchilada meal, we don't have this here is it tasty :))

Hi I am a 20 year old female student with AS. I was diagnosed 1 and a half years ago now. I am not on a biologic yet. I take sulfasalazene and methotrexate.

I can tell you three things will make a world of difference for you diet, exercise and attitude.

YEP THIS SUCKS. I hurt every single day. Started pain when I was 13.
The meds help but I still hurt. Sleep is the worst. I would pay a million dollars for one solid night of sleep. But, If I get a decent nights sleep then I pay for it with such stiffness in morning that I have to will myself out of bed. But I do get up. And I make myself pretty and go to class. I had to get past feeling sorry for myself . It was amazing once I did those around me became much more empathetic. But I only give myself three complaints a day. So I save these for someone who will really care. None of my classmates know. Others will not understand. I only get frustrated trying to explain. Get your head straight. Being depressed will make you hurt more. Get meds or mood supplements if you need to.

For exercise get in the water. I read here that swimming helps and omg it really does. At first all I could do was go in deep water and tred water for five minutes now I can do laps. I try to swim three times a week. I also do yoga. Just at home with a video. I cannot do it all but I do what I can. When someone posted to exerc7se my first reaction was are you nuts I can barely move. (I was still in my poor me phase.) But I knew I could not go on like I was so I tried. Exercise is huge for feeling better. Also releases feel good hormones in your brain.

You dont haveve to give up food altogether. You have seen good results with a fast so proof positive diet works. So try diet again but don't starve yourself. I am not real strict with my diet like some people here but I do find it help especially when I get bad. Try a simple diet. Make adjustments where needed. I eat yogert and fruit for breakfast. I think cherries work well. I also make smoothies with the fruit and yogert. For lunch I eat yogert, a cheese stick, and an apple. I have dried fruit or cut up vegetables for a snack. For dinner I have a salad with grilled chicken, fish or pork. I avoid bread, potatoes, pasta and sugar. Just keep it simple.

I do take crill oil but I do not overdose on it. I also take probiatics. My mom gets them from pharmacy windowvthey have to be refrigerated. I take a multivitamin and extra vitamin D and B. I take a cherry supplement.

Read and research use trial and error to find things that work. But when you try something don't go overboard. If a little helps more will be better is not always the case. Like exercise take it slow. Much better plan thanwaiting to die.

Hi Katy, amazing post what is your star sign you sound even more determined to soldier on than Possi :-)

I do at least half the things you do - yogurt and fruit for breakfast, also lots of water during the day.

No junk food at all, I prepare everything at home myself.

I totally gave up fizzy drinks and alcohol two years ago and yes this had made a big difference.

Morning stiffness and pain is the worst for me too.

Have you tried OMEGA 3?

For me it is as poweful as a daily NSAID however it started lowering my heart rate so I had to stop

Any other supplements you recommend?

I still don't understand why so many of you take probiotics ???

Have you considered starting a TNF-inhibitor.

I hope you have a mild disease and it subsides over time.

I really enjoyed you post. I am very thankful for your ten good years. I happen to believe you are going to have many more good years. You just have to come to terms with the "new" you.

I loved my career dearly. I had no plans to ever retire. I started getting more and more fatigued and my pain was getting worse and worse. I was having trouble with vertigo. I was up and had my walk in before 6:00 every morning and was in my office shortly after 7:00 every day. I liked to get there before every one else and get my day lined out. I kept pushing, working late. If anyone in my office had to work late, I stayed until they finished. I worked days when no one else worked and I got more and more tired. I found myself shutting my office door and laying down with my feet against the door so no one could come in and napping. I didn't take a day of vacation for 3 years. I wonder if we tend to have Type A personalities. I know that I was driven to do the best I could. I think I drove myself and got so exhausted that my body just cratered. I was in the office on Friday and by Sunday I was in the hospital. It was 9 months before I was able to even go have a look at my office. I was 43 when I went on disability and I had 27 years of Social Security income. I worked before I was old enough so I had worked more than 27 years out of 43. I worked all the time I was in High School and College. I think I just exhausted myself.

My doctor kept telling me that this life would become the new norm. I would tell him that there was no way this would be normal. Guess what! It did and it really didn't take too long.
For a few years, we did the "Remember whens" and the "what ifs"
but those times became fewer and further apart. Our life now is our norm. Normal changes and it is good. It is just different.

I believe you are going to have many more good years. Different but very good! Your Grandmother has shown you that hasn't she?


I wish I could make you a big pan of enchiladas. Yes, we think they are very good. I know they aren't as good as some of my Hispanic friends enchiladas but we enjoy them and it is something I can make a lot and have more than once or share with a neighbor. Very simple, just make you enchilada sauce (or you can buy canned). Cook your ground beef, seasoned how you like it. Soften the tortillas(corn or flour) in the sauce and put your cooked, drained meat on it with some grated cheese. Here, you can do what you want; add beans, corn, onions, whatever. I just made them plain this time. Roll them up with the meat and cheese in them and put them in your pan. When the pan is full of enchiladas, pour more sauce over them and sprinkle with more cheese. Put in a 350 degree oven and bake until they are bubbly.
You can make them with just veggies; corn and beans, onions, etc.
Just whatever you like. This time I had shredded Romaine lettuce, chopped tomatoes and onions that we put on top and some sour cream for those who like it. Try them. We like just these but when we are having people over, we also have beans and rice.

Tell your Grandmother hello and she is an inspiration to me that she is still going.

I am so thrilled that you sound happy. You are going to come out on top of this thing.

Have a good weekend. Remember to always take time for God and for you and your family. Enjoy the good things. Work is not all there is to life. I found out the hard way.

Blessings.

Oh Katie is so right about water exercise. It has kept me going through the years. I take probiotics. It helps keep the good bacteria in your intestinal tract. I have severe kidney problems from Lupus and my Urologist recommends them to help overcome the bad bacteria in my kidneys. I take Vitamin D. Most of us are low on D. I take a B Complex, heavy on B-12 because mine is very low. I also take a good multi-vitamin.

I agree to educate yourself. Read; just be sure it isn't old information. Make your own decisions regarding your treatment, diet and exercise. It is your body!

Rest well tonight.

You are like our KickAS mommy here Possi, always good advice and trying to cheer us up. :-) And a enchilada recipe to boot

Absolutely no desire for food today just an apple

Work and family is what keeps us all going basically, I don't think it's fair what happened in your case you sound like a real passionate person about lot of things and that makes it even harder when disease strikes.

I cried a lot yesterday and collapsed on the floor, I miss my dad.

He died in August 2014.

Mom was admitted to a psychiatric intensive care unit after the funeral.

When I came back home to see our empty house my knees bent like jelly and I had no strenght to go through the front door and stayed outside for a few minutes trying not to break down.

I don't wish what I have been through to anyone.

Dmx07,
Hang in there man, things will get better. I am at a loss of words to be honest, just letting you know we all care.

I am so sorry for your grief. I still grieve my parents. I am so sorry for you Mom. She needs some hugs "every day".

I like being "KickAS Mommy". That made me smile.

I told my husband about giving you the enchilada recipe and he was wondering if you would have tortillas and other things to go with it. I have no idea what you main foods are. Actually we eat lot of vegetables and fruits and chicken. We eat some beef. The enchiladas just sounded good here during the cold strtch of weather.

What you have been through is so very hard. How is your Mom doing? My sister lost her husband about 1 1/2 years and she is a few years younger than I am. She has had such a hard time during the Christmas season. We are all alike in how we love our families.

I hope you have a good week and that tomorrow is a better day for you. I know your dad would love to be there with you and would be proud of how you are fighting to be healthy.

Blessings for you and your Mom.

Hello Possi and elmerfudd,

Thank you for your replies and kidness to me. How is the new year treating you guys so far?

I am severely traumatisied because my dad lost his battle with cancer of the immune system, a rare and very aggressive type of non-Hodgkin lymphoma.

I was with him when he first developed symptoms and a few months later I had to bury him.

We all fought very hard but in the final days he was not able to stand on his feet anymore and quickly slipped into a coma.

I fear taking anti-TNF as it caries a risk of lymphoma but so does constant inflamation so still undecided on Humira.

I truly hope that there is some mercy in this world and I don't get lymphoma, it's impossible to treat doctors gave my dad experimental drugs, he was on a two brutal chemo regimens combined and nothing worked. His heart and lungs filled with fluid then it went into his brain.

Amazing how tough brain cells are, they start to die and switch off at the very last moment when completely starved of oxygen.

Then the brain switches off like a computer in a split second before you know it and that's it.

You have been through so much. I am so sorry. Depression can be such an ugly monster. You have every reason to be depressed but please fight it. Depression does horrible things to our bodies. And we AS buddies cannot afford any other attacks on our body. Talk to your doctor about depression meds. They do not have to be taken forever. They really help get over the depression hurdle. Make a simple daily exercise routine and stick with it. This helped me so much when I was so depressed. Exercise releases hormones that help with depression. AS steals so much from us don't give it your joy too. Your Dad would want you to be happy.

I too am afraid to take biologics. Lymphoma runs in my family too. (I know they say it is not in our genes but that is bull.)

My doctor says that there is new research that suggests that the chance of increased cancer is much smaller than previously believed. He is a very old doctor and says in all the years he has been prescribing biologics not one of his patients has gotten cancer. I know that many people take these with no problems but it scares me too much. I wish I could get over my fear but not yet. Let me know what your research suggests,

I take methotrexate. It has really helped me. I still have pain every day, but it is manageable. Little side effects except it has really thinned my hair which sucks. My doctor doubles my folic acid which I hope will help with that.

Keep fighting the depression. You can move past these dark days into the light. I will pray for you.

By the way I do not know my star sign.

My new year is going well. I start back to school next week. My friends are coming and going. That is my high school friends are heading back to college out of town and my college friends are coming back. One thing AS stole from me was the ability to go away to college. I was diagnosed right before I was to leave and the depression and being overwhelmed with meds etc. caused me to choose to live at home and attend college in my home town. I regret this sometimes but as Possi says our new normal settles in and we learn to adjust. I have an awesome mom who supports me so living at home is best.

Hope tomorrow is a day of light.

Good Morning!!

I hope each day is better and better in every way.

I can't write much because I am off to another dr. appt. This time it is at the Eye Institute for more tests. I have a lot of eye problems from Lupus. Currently, we are keeping an eye on a hemmoraging optic nerve. Didn't spell it right because the eye is not right. LOL

Have a great one.

Later.

Hope it all went well, how is your eye pressue?

DMX, don't worry about the cancer.

Now that these drugs have been out for 20 years, there is ZERO evidence of increased risk of cancer in patients other than RA patients. And in RA patients, it's because they tend to get lymphoma, not because of the drugs.

As for the TB, worry about the TB but be sensible. Get checked for it regularly. See the doctor if you have persistent fever and cough.

Seriously, these drugs can make a huge difference. They can give you your life back.

Hi Mike,

Thanks for your reply. There is increased risk of cancer in AS from constant inflamation but probably not as bad as in RA.

I hope you don't get it and I don't get it, but yeah there is risk.

I heard from many AS patients that TNF blockers have given them hope and a will to live, something I badly need right now.

Are you on ant-TNF yourself?

I received a phone call today and a lady informed me I have been rejected treatment with Humira. She said they will send a letter with details on why they turned me down.

I waited for more than 2 months.

work with your rheumatologist to appeal this decision.

Thank you Sue, yes I want to apply again for Humira, it's not a crime.

I was given a second chance for Humira.

I have 30 days to provide a new blood test and they said they are ready to reconsider my application.

That's great news! I'm keeping my fingers crossed for you.

Warm Hugs,

Hi, hopefully soon allow you to start with Humira and have a great success .

I 'll start with Enbrel in days , you maybe this weekend , actually I already have the medication in my fridge , but I have much respect.

Good luck

Thank you guys for support.

jou what are you waiting for give Enbrel a try and post how you are feeling

Are you scared of the injection?

Hello dmx

An hour ago I got my first injection of Enbrel .

I was afraid to how I will feel ... but not after injection.

I hope you're a little better for your health.

Have you already been achieved humira ?

Thank you very much for your support

Hi,

Glad to hear you have started Enbrel, hope treatment works and puts you in remission

No Humira yet for me, no I have to prepare new documents.

I have been wondering about you.DMX get those papers prepared and let's get on with this whipping this disease.

JOU I hope you do really well from your injection.

Blessings.

Thanks Possi .

On Saturday I got my third injection of Enbrel and so far seems to work pretty well , now I want my diet more strictly. At night I've noticed most is that I have not pain middle of the night in the back or chest.

Take care

a greeting

Hi guys,

Glad everyone is doing well.

I was approved for Humira today.

I hope humeria is a game changer for you good luck Mike

Thanks Mike.

I am scared to start it

More and more joints are gettting involved I fee like I am falling apart.

Recently I started getting a lot of shoulder pain and my right arm is making a horrible cracking sound.

I can't believe it's happening.

My left hip joint feels like it's going to pop out of it's socket every time I lean on its side.

I feel some of your pain dmx. My diagnosis was 10 years ago when I was 25, after a long period of misdiagnosis which included a spinal fusion operation and diagnoses of hypochondria and depression.

I didnt know what was wrong with me, why was I always in pain and so tired? There were times I was sure I had something terrible. Cancer, AIDS, all sorts of things. I starting having panic attacks and thought they were heart attacks.

When my AS diagnosis eventually came, I actually felt relieved that there was something wrong with me, it had a name and I wasn't mad or making it up. Or a wimp. And, best of all, it wasn't a death sentence.

But of course it is incurable, progressive and hereditary. I wasn't going to be able to play football again. My future children might get it, if I could even find a wife who would have someone disabled like me in the first place.

I was really into my sports, always on the football pitch or tennis court, and it was very difficult for me to accept that I couldnt play anymore. Ive never really got over having that taken away from me to be honest.

I had also just met my future wife at the time I got my AS diagnosis who didn't know there was anything wrong with me. I didn't think she would want to stay with me once I told her I had a hereditary and disabling disease.

I was very depressed for a week, maybe two. Couldn't face the world. I called in sick to work and stayed in bed.

Eventually I got the courage to go see my girlfriend and tell her the news. After speaking with the doctors about the risk of any future children getting it, she still wanted me. I am very lucky.

After a while the anxiety, anger and depression started to ease a little and I began to accept what I had. I concentrated on what I could do about it.

Things that helped me:

Understanding that pain levels will rise and fall - there will be good periods and bad periods. Today may be bad, but tomorrow could be really good, such is the unpredictability of AS. I have had flares that have lasted just one day. Yes, some have lasted months, but each day I wake up and its different to the day before. There is always hope that tomorrow will be better.

I try to keep my mind occupied so I dont get depressed. I try not to think too much about the future. Everything has a beginning, a middle, and an end. Practice patience.

Get medication sorted out and pain levels under control. I had been trying to battle AS with minimal medication , it was a really bad idea my quality of life was very poor. I have periods when I can survive without NSAIDs but I self medicate now alternating my dose between minimum and maximum depending on how I feel and what activities I will be doing that day.

Pillows - if they are too big they give me terrible back pain next day. I use a towel now instead. This gave me neck pain for a while but that passed.

Bed: Too soft and I get back pain next day. Too hard and I get bruised hips and shoulders.

Sofas, chairs, car seats - make sure the seats you are sitting on most are not causing you problems.

Food - certain foods cause me big problems. Orange juice and bananas give me awful flares. Im suspicious of dairy too. No starch diet didnt work well enough for me to be worth the effort and expense (although i was having dairy at the same time), and as someone who is underweight and active i wasnt getting enough fuel in to my body. My diet is focussed on getting lots of calories in and as much of that through whole foods, fruit and vegetables and lean meat as possible. I need to cut out the alcohol but i enjoy it so much...cider seems to be the least worst alcohol for my AS.

Swimming has a huge pain relieving effect on me, greater than painkillers. BUT I only swim for 15-20 minutes a day at a light/moderate pace and built up to that slowly. It is almost "active stretching" in the water. Even with my worst flares I try to get in the pool anyway. I have also learnt to swim efficiently with a total immersion swimming course. I also mix up the strokes, I do 4 sets, with 1 set being 2 lengths of breast stroke, 4 lengths of freestyle and 2 lengths of backstroke. This all helps reduce the impact on my joints and muscles.

Ice helps flares. Cycling hot and cold baths or showers can also help, particularly after exercise.

Concentrate on managing your symptoms, you will be surprised how sometimes something as simple as changing your pillow could make a big difference.

AS is horrible, but I am thankful for what I have. There are people who are dying in front of their families who would give anything for another 10 years, in pain or not.

Imagine what you'd miss if you werent here. Family, friends, children. Seeing your football team win their league, meeting a beautiful woman, seeing the northern lights or the taj mahal. Enjoying a boullebaise in Nice, a pizza in Rome or a paella in Barcelona.

So sorry to hear about your dad. I cannot imagine how painful that is. Life is too short.

Thank you Staffy great post.

What about stress? Is it a big trigger for you?

Not that I've noticed, but it does upset my stomach badly.

Yay!

Have you started it yet? I hope its the game changer for you that its been for me. For me, it started working within hours, really less than that even. Its great stuff (for some of us at least). Fingers crossed for you!

Let us know when you start it.

hello, how are you?

I wish you much luck.

I hope that Humira is a great help for you

luck

Hi guys,

Thank you for your support and replies, how are you feeling today?

I've waited so long for Humira... feels unreal that I finally have it here next to me.

I injected first Humira in my life tonight in the stomach, they only have pre-filled syringe here so I can control speed and inject slowly when it begins to sting.

I can't believe I can sit in a chair like a normal person without feeling like I am wearing ten bricks loaded on my back.

Hi


I am glad that the humira this working well on you. Gradually you can regain your former life ...

Saturday I will put my fifth injection of Enbrel , is working very well on me, I have only a little discomfort in the left big toe, but compared to the previous season by 5%.

Friend, I 'm glad you're much better , do not forget to count your experiences and be very happy.

You're a great warrior in this battle

luck

That's what I like to hear. I hope the beneficial effects continue to increase for you, and that you get none of the side effects.

Warm Hugs,

Thank you jou and Inanna, I am scared of Humira side effects yes especially cancer.

Hello friend , let humira work in you and sure everything works fine , you do not stop caring for your feed and see how everything goes well .

In your country you had to make a vaccine protocol ?

No, nothing of the sort. Did you?

Hi

Yes, in my country ( Spain) before people take biological meds, people make un vaccine protocol, hepatitis b and c , flu and other ..,first thing I did was proof of tuberculosis.

Luck

Ahh, yes. Sorry I had that too I had a Mantoux test 10 mm.

How are you feeling on Enbrel?

Hey dmx.

Im sorry you are in so much pain. I know this post is older so I hope you have had some relief. I went through very similar treatment from family and I had to eventually cut off ties to a few of them. However, the positive in this is that I now know who is an advocate and who is not.

As far as humira I took it and I had immediate results from it and was virtually pain free within a week of my first shot. The downside is that I got an infection from it and had to stop taking it. I'd say give it a shot (no pun intended) and see if it helps. Yes these meds can have long-term side effects but in a way anyone with a chronic condition has to surrender and "just go with the flow". Trust me I understand what you are going through but being in excruciating pain is not quality of life. If humira can help this then I'd say do it. AS far as your depression and thoughts of suicide, I've been there and understand. But it gets better and you will learn how to cope with this.

Hello,

I also felt relief from my first Humira shot, so far my experience with Humira is good.

I am also struggling with asthma and pollen allergy.

Humuria is not the best choice for AS as you have to take Methotrexate with it in order for it to work for AS.

Cimzia and Enbrel are much better choices.

I am glad it is helping you. We all react so differently to the meds. Keep it up!!

My rheumy has had me on MTX with all 5 of the biologics I've tried. Currently on Cimzia and MTX. But for dmx, glad the Humira is going well for you.

Some days I still have back pain but not as intense.