Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Questions on Humira?

Hi everyone .havent posted in a while.I guess the Enbrel i was on wasent working ,so now i just started Humira.I take it every other week at 40 ml.I was wondering if this worked well for anyone.If this doesent work for me then Rheumy wants me to try Remicade.What if none of these work.......where do we go from there.These are the only 3 main drugs i know of for AS.
Thanks to everyone .

Hi John,
Im on Humira been on since May just had check up and it is working although Im still getting a lot of pain I can move a lot more than I could and my inflamation has come right down. My pain is coming from the damage and not much other than pain killers can be done about that.Hope it works for you too.
Kevin

Hi fonzy, I will be trying Humira soon, as my insurance company just approved it. I was on enbrel and now will try Humira. I have been off of enbrel for bout 6 weeks now and can tell. Funny thing is, that all my blood work was normal- Sed rate ok....and other inflamation markers ok.....I am having a fibromyalgia flare-up and my back is acting up again. Thank goodness for tramadol to take the edge off a little.I will also try to limit my starch as I really think there is something to that.
I like you hope humira will work......we gotta give it time.
Good luck, Linlan

Hi Fonzy, So sorry to hear the Enbrel wasn't a success,
I have been on Humira for 2yrs now, It took 2wks for it to kick in with me, & it's been wonderful,( apart from catching every bug known to man/woman ha ha )
Fingers crossed it will work for you too.
Mez

Please don't give up!

I do believe that just because one type of drug doesn't work does NOT mean that maybe one of the others might.

Now at this point I can only talk about Remicade and to be honest with you I was starting to get down about it. I have had 7 infusions and we started with the lowest dosage and learned really quick that I was going to have to go up to the highest dosage which we were hoping to save for later on.

Also, so far I have not gone more than 4 weeks between Infusions. I am so glad that my Dr. has my best interests at heart, he could have been like come back in 6 weeks but he tells me that if I feel like I need to get back in sooner just call and they will get me in for another Infusion quicker.

Even thought they are considered the same class of drug (biologics) they are made out of different things (most of what I dont want to think of..lol) but it is helping me and I am feeling better than I have felt in 18 years.

Before Remicade I would say that I was at less than 25% quality of life, now with just 7 Infusions I would say it is at least 50% or a little better...YEA!!!

So don't give up, if one doesn't work try another BUT please make sure that you give it enough time probly at least 2 months. My time for feeling better with 7 Infusions has been since April so I have had to go 6 months before I am feeling the full effects of it.

I am hoping it just get better from here.

Good luck,

Lisa

hi Fonzy...it's so good to see you but I'm sorry to hear that the Enbrel didn't work for you, hopefully the Humira will work and you won't have to worry about running out of options...just out of curiousity, does your doctor have you on MTX along with the biologic?...good luck with it fonzy ...

Hi Fonzy,
I'm sorry to hear enbrel didn't cut it. It petered out on me too, for some unknown reason. Had a couple of really good years on it though. I went to humira without much of a response, although, I don't think my rheumy gave me a long enough trial - only 4 shots (8 weeks). He didn't want me going to remicade because I had episodes of vertigo. No idea why that mattered for remicade and not the others. (???) Anyway, he left me with only pain meds, so I had to go with NSD, and I had to make that work for me. I was already playing with the diet as enbrel was wearing off - I kind of knew where I was headed. There are ALOT more biologics out there now though, thank goodness. Lots of hope. No worries. Just need to find a rheumy to help you navigate the meds

Fonzy, you go where I am right now...a heap of frustration and a little sadness I guess. In the beginning I was on huge doses of Prednisone because I was very sick. I have been on Plaquenil (twice), Methotrexate (both orally and injected), Imuran (for 8 years) (and then again this year for about a week!), Remicade for a year, Humira for one injection!. I had very serious reactions to all of them except the Prednisone and that was just the awful things it did to my body. I handled the Imuran very well the first time round. It stopped my Iritis/Uveitis that nothing else would touch. After I had to stop the Remicade which about did me in, he put me on Humira. First injection my bp (which had been high since I was 29) dropped to 42/30 and I was one sick cookie. It almost never came up. Humira had to wear off and we still have to watch it because it gets very low.
Then he put me back on the Imuran which I had taken so easily and my whole head swelled up like a huge balloon. I had a terrible allergic reaction.

Bottom line, the rheumatologist (who is supposed to be the best in the state) told me he "will not" give me any more Biologics/TNF's. He said he will only prescribe pain help and sent me to the Pain Management dr. and then to specialists when the Lupus attacks different organs. They are afraid to treat me.

I feel like every one has given up on me and the pain meds just don't do it. I have a friend whose husband is an Orthopedic surgeon and inserts the (forgot the name) permanent electrodes for pain. He said that there is an average of 50-60% decrease in pain, one time he got an 80% decrease and many times no decrease at all. Hard to want to try it for those odds and have to go under anesthetic and surgery.

I am just trying to deal with the fact that this is my life and evidently not any way to change it. My body does not handle the meds at all.

I am taking pain meds, going to PT and went to the Pain Management clinic for 4 procedures this year.

I know this was not a very encouraging post and I usually try to not post unless it can be an encouragement to someone. I don't feel encouraged right now.

Let's just count on one of these working for you. Just look at it this way. You have no reason to doubt the Humira and then you have the Remicade and look at all of the people on this forum who have been helped by both of them. Just wait to worry.

Hugs and Blessings.
Possi

(((Lisa))) I am SO happy for you that you are getting some relief and that you have your sweet hubby home more. You are really being blessed and I am so thankful for that.

Hugs and many more Blessings, Friend.
Possi

((Megan)) You are kind of in my boat. It is a rocky one isn't it? Yes, there are more meds coming out. Evidently because of my CNS problems with the Lupus my body never knows how it is going to react to new meds so they won't give me any more.

I am glad to hear you be so upbeat. You are a blessing.

Possi