Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Humira what to do

Hello All,
Im looking for advice from you all I have a bit of a problem as you know I was on Humira for 6months untill I got swine flu and was very ill with breathing problems. I decided I wanted to come off the Humira because of developing infections. Well my Rheumy nurse wants to try Humira again or go on Embrel. Im still worried about trying biologics I dont want a winter of being ill. And the other thing is since Ive been off the Humira I feel great in my self the pain has got slightly worse and Im starting to loose the movement I gained but I feel great I dont know how to describe it sounds strange I know being in pain and all stiff but feeling great.(perhaps Im mad)
Dont answer that .. Im so used to the pain and restricted movement that I dont feel I gain much from the Biologics.
At the end of the day its up to me what I decide but Im finding it a hard choice to make. Thanks for reading any advice would be great.
Kevin

Kevin,
I have never used the bio. So my advice is purely, go with the best gut feeling that you have. I have such bad luck with stuff, yet been so blessed, I just keep on going with cymbalta, for now.
I do hope that you have less pain and more joy in the ocming months. Hey, remember, you could be me...... feeling better now????? You could be stuck posing as a preacher......
yea, I can see you feeling releif and breathing better already...
Take care, get better please
Your brother in pain.
Lon

I've been on Humira for about 3yrs. or a little more. It took 6 mo. to get some relief. I don't like the possible side effects, especially since we have added Arava an Lyrica. My family is afraid I may get cancer. I just have to hope and pray that doesn't happen.
My lab markers have greatly improved. Actually they are normal and have been for awhile now.
I guess it it a risk to use it, or a choice to take or not to take it.

Maybe you can help me. I just had a hip injection today and hoping that will calm things down.
Do you notice hip pain? Or is your AS more in the cervical, lumbar area?
Thanks Susan

Kevin i hope you find something to help.My son just foud out he has this old AS,He has been on humria fo 6 months but keeps getting staff infections so his rummey wants him to try embrel .I was always scared of the bios so i have stayed on ndocin but for some reason my body excepts it ok going on 25 years + but i know most people cant take it.Seams these meds affect everyone different.
Bradford

A hard decision. I just will pray for you as you make this decision. The Humira about did me in so I have no input. I won't be taking any more Biologics or TNF Blockers.

Take care of yourself. I know the pain gets so old but you know I was on the Remicade for a year and hurt like the Dickens and just got sicker. The big gun meds are not for me.

Take care.
Blessings.
Possi

Hi Susan,
My AS is all over. Yes I get hip and knee pain makes it hard to walk some days.Just a part of it I'm afraid , Hope the injection helps you.
Kevin

Thanks Lon I think your right I need to go on gut instinct and at the moment that's telling me NO.
You take care of your self too I need you to advise me or I will get in trouble with mig all the time.
Take care
Kevin

Hi Bradford,
I was told Embrel was better and didn't cause so many infections
But I think its a case of try it and see. Its no good taking a drug for AS if its going to make you ill with other things all the time.
Kevin

Hi Possi,
It is a hard decision but I don't want to keep getting infections.I feel better in myself not being on it and not having to worry about getting near my grandchildren because they have colds. Might as well lock myself in a room and vegitate for the rest of my life . Biologic's might help with inflamation but they dont help my pain I would rather have an immune system and a near normal life.
Kevin

Quote: "I would rather have an immune system and a near normal life."

Think you have your answer Kevin...to go with your gut instinct!

Dunno IF the LDN would help with the inflammation at all, mebbe not... Perhaps a word with Dr Lawrence might help there - or anyone on the LDN.org forum group. No harm to investigate.

Take care man - HUGS to you and to Joanne - scritches to doggle

Molly C
Keeping on Keeping on