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#498192 12/09/13 01:58 AM
Joined: Sep 2001
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I was getting site bruises and rashes and getting sick so my doc switched me from Enbrel to Humira ...the shot pen hurt, and it's in my system for two weeks...if I get sick, which I just was, I had more control with Enbrel...would stop shots and take meds...now I will be on meds while Humira is still affecting my immune system...we will see how this works!


Linc O'Brien
LINCinNYC #498277 12/12/13 01:17 AM
Joined: Aug 2013
Posts: 90
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Please keep us updated. I will be starting the pen shots humira very soon.

What is your age?

LINCinNYC #498283 12/12/13 12:25 PM
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Hey,

Please keep posting as my dr wants me to try humira as well.

I was supposed to start it three weeks ago.

Good luck

LINCinNYC #498719 12/28/13 05:10 PM
Joined: Jul 2001
Posts: 3,334
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I was taking bi-weekly Humira but stopped after 5 months. Saw no benefit at all but some people get better after 1 injection. We really are all wired differently.
Going to hopefully try Remicade next and see what happens there.


Timo
LINCinNYC #498724 12/28/13 06:30 PM
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Very_Addicted_to_AS_Kickin
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The pen shot does hurt like $%#* but I'm lucky my husband will shoot me.

I don't cry or scream anymore, but I do still curse when he gives me the shot.

I think its the preservative in the drug that does it.

Still, it works so well for me, the few seconds of pain is worth it for the relief of all the other pain.

I was one of the lucky ones. Had the first shot in the doctors office, by the nurse, with my husband watching to learn how to do it. By the time I got home, it was already working. As I stood in the kitchen to make my lunch, I told my husband that I could swear my feet didn't hurt so much. The next morning, the constipation was gone. That fast.

And 7 months later, it continues to work. Best in week one. A bit worse in week 2. But its still very good.

I have still flared on it, but not as often, not as severely for the most part.

Just one big flare in august and then I needed prednisone for 10 days (4 mg dose pack stretched out a few days).

The flare I had at Thanksgiving was just some shin splints and arm pain similar to a shin splint (and a few other itises).


The flare I just had right before christmas, was almost bad enough for prednisone, my SI joint caused my lats (lower back) to be really stiff, but the muscle spasms didn't progress to the screaming kind, so I just soldiered on without prednisone.

Then I had my neck (c2-c3, c3-c4 facet joints) injectioned with cortisone (had been planned for weeks, just good timing on my part). Could tell the cortisone was coursing through my body some as I got the pred flushed cheeks. And my SI joint healed up a lot faster than it would have on its own.

So, yes, I still flare, even on Humira, but not as often or as severe as I used to.

As for getting sick. I had a head cold a few weeks ago. Had taken Humira a week before. Didn't get any sicker than I ever did (prior to Humira). I am still on LDN and do take vitamin C daily (as instructed by the rheumy) and so maybe that's why I didn't get too sick.

I was concerned about getting sick on Humira, but so far, doesn't seem like its too big of an issue. I think I must have a really strong, really stubborn immune system that even Humira isn't quite a match for. But its the best thing so far (except for pred, pred is the very best, but I know pred is a double edged sword).

Good luck on the Humira, may it help you quickly, well, and for a long time.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
LINCinNYC #498748 12/29/13 08:38 AM
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Posts: 9
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I'm newly diagnosed but like many others suffering for way to many years. I always had a good excuse, pulled muscles, strained back etc.
My rheumy sent me for an MRI to look for early evidence of AS. Oh well, already have ankylosis of both SI joints, not complete thank G-d, with edema and active inflammation. I'm supposed to start humira but needed some abdominal surgery which I had 2 weeks ago.
All seems to be healing well, slowly but surely.
When do you all think it would be safe to start the humira. Of course I'm consulting my docs, but just curious what experience others had.
I'm very hopeful tat the humira will help my back, hips and milder peripheral joint stuff going on.
Thank you very much and happy holidays to all.
Laura

Golanist #499682 01/20/14 06:35 PM
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I am in a very similar position as you ^ and would love some perspective from others based on their initial and long term experiences with Humira. I am a 25 year old male and will be starting Humira within a few weeks (I have been hesitating because of all the side effects I keep reading about...I know I shouldn't do this!).

I am curious to know who else has limited range of motion bending forward or side to side and how they are feeling after Humira. Did this medication "end" this range of motion issue at all? I cannot even bend forward to tie my shoes or pick up items from a lower surface, so I am hoping that others may be having the same problems. For those of you posting, please let everyone know your age smile


=Paul

Last edited by psr; 01/20/14 06:42 PM.
psr #499747 01/22/14 12:31 AM
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Very_Addicted_to_AS_Kickin
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certainly when my SI was flaring badly, bending was out of the question and now that I don't flare nearly so much, bending is much more possible.

Too: It had gotten to the point with my SI joint that if I bent over about 45 degrees to say water plants on a bay window's window sill or any such need to bend 45 degrees, always my SI would really ache and my lower back would tighten up for hours afterwards. Now I find I can bend like that without the aftermath. I don't push it, as I figure its not a great thing to put my SI joint through, but on Humira, that's improved.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
psr #499804 01/23/14 02:59 AM
Joined: Nov 2009
Posts: 378
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Fifth_Degree_AS_Kicker
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Originally Posted By: psr
I am in a very similar position as you ^ and would love some perspective from others based on their initial and long term experiences with Humira. I am a 25 year old male and will be starting Humira within a few weeks (I have been hesitating because of all the side effects I keep reading about...I know I shouldn't do this!).


I can't give you stats about Humira, or debate the side effects. All I can say is I've been on it for 3 years and it's totally changed my life. Totally. Miraculously. My flares have lessened, my mobility has improved. It's a wonder drug for me, but it's the opposite for so many others.

Thing is, Paul, you have to discover that for yourself.

I
Quote:
am curious to know who else has limited range of motion bending forward or side to side and how they are feeling after Humira. Did this medication "end" this range of motion issue at all? I cannot even bend forward to tie my shoes or pick up items from a lower surface, so I am hoping that others may be having the same problems. For those of you posting, please let everyone know your age smile


We all have limited movement - before Humira I couldn't move or breathe, the muscles and bones in my chest destroyed by AS. As for my age...I'm over twenty and under fifty. laugh




Last edited by Irish; 01/23/14 03:01 AM.
Irish #499865 01/24/14 05:01 PM
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I am praying that I get those same results as you once I start Humira. Since everyone is different, I can't expect the same as others, although I can sure hope. My specialist says that you have an advantage being somewhat young and healthy and he has only seen a very tiny percentage experience adverse sides.

Happy to hear Humira has helped you though - the last 2 years have literally been a living h*ll for me...as you all know, diagnosing AS can be the most difficult part. It took me 3 years to finally figure out that I had the disease. I was wondering if anyone has any tips for injecting the pen? Do you grab some fat on your stomach? Do you inject in your leg?

Thanks

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