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

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.