Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starting Humira and I am scared

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.