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

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