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

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.