Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group HUMIRA

I have my first shot on Thursday. Can't wait to start feeling more 'normal' again after all these years.

Hi Reddy,

I haven't updated/posted in a while but I am doing very good these past weeks. I cannot take anymore biologics because of the allergic reaction I had to Enbrel. It stopped my heart 4 times. The doctor said it is too scary for me to even try the others in the same family of biologics.

So I have been trying other methods and the no starch diet brought me 50% relief and then 2 months ago on the advice of a nutritionist I stopped eating sugar, dairy, and even fruit (natural sugar). And the results have been a miracle for me. I cheat on the diet sometimes and pay heartily with pain, but not often. Just often enough to keep me sharply aware of why I follow this crazy diet! I'm not perfect but life is worth living again, and that's enough for me. I really like watermelon, and as it is summer here, there is alot of it. It must be pretty high in sugar because I pay dearly for indulging in it. "Above all, self control!!" lol I think that is from the wicked step-mother in Cinderella. Fitting.

My mom takes humira with great success. She has a Dx of Psa, Psoriatic Arthritis, a sister disease to AS. She probably has AS, but OUR doctor is a little too busy to connect the dots, even though she was with me when he diagnosed me. Hmmmmmmmmm.

Take Care,
Wishing you much success.
-Donette

Down where, Ivanhoe??

oh donette, the heart stopping 4 times sounds very scary, once would be more than enough for me! so sorry about the allergic reaction. but glad diet is helping you.

I started taking Humira on June 2. I have had that same improvement to my AS. After 6 weeks I am feeling so much better. It seems as If I am 20 years younger.

With my insurance it costs me $20/month. If I get it mail order(I will do this in the future) it will cost me $50 for 3 months.

Donna

I've been on Humira since mid March this year. Before that, I was struggling with sight threatening bilateral uveitis, and had lost vision in both eyes. Since Humira, I've regained my vision and both eyes have been quiet for a few months, which will allow me to withdraw some of the other immunosuppressive medication I've been on to control the uveitis.

As an added bonus, I've been able to sleep back in my bed, rather than sleeping on the floor, and not wake up with a sore back... and it lets me cheat on the LSD without too much pain (...which is probably not a good thing really...!) The downside is that I do pay less attention to exercise at the moment, as I don't feel it as much when I don't exercise! Must exercise the willpower more...

I also carry hand sanitiser around with me, and have not really had any problems. A cold sore was treated with a course of aciclovir and I definitely also have any/all flu jabs available.

Hope your improvement continues!

-Anke

I'm so jealous(but SO happy) that the Humira has worked well so soon for you! I just took my 3rd shot, so I've been on it for 6 weeks, and i haven't felt ANY difference. tonight i had a breakdown and cried like no other. i just don't understand why it hasn't started working for me? why do i have to be in so much pain? why can't i get any relief? i'm just so upset on how my life is so far and i'm only 21 my life is supposed to be just starting.

I'm in the same position as you pink, it is so, so depressing. I am only 23 and have yet to have a dx, but on a daily basis am suffering from increasing pain and a lower level of mobility. Have a bit of faith and realise there are others in there in the struggle with you

I have had some very high hopes for the Humira injections to work for me. I just got my first one but have not noticed anything yet and just found out that my insurance company denied me to recieve it. My doctor supplied the first one. It was a long process waiting to start it to begin with. My doc said we have to do it just right and try all the other required forms of meds first including methotrexate which has been a nightmare for me. I dont understand how the insurance company can determine a persons quality of life. I am in the USA. Has anyone else been through this?

Hi Pink,

I have no idea why the Humira worked for me within days. When I took my first needle I had the doctor overseeing me that I did it correctly. I asked him how long it would take to have an effect. His quote was, "it is slow acting and will take 6 - 8 weeks before it kicks in". I was amazed that within 48 hours I had gone from crippling pain that you well know to absolutely pain free. Maybe just hang in there and it will eventually have an effect. Goodluck.

Cheers
Alan