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Considering Humira #280779
07/16/18 11:31 PM
07/16/18 11:31 PM
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Mike19 Offline OP
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Mike19  Offline OP
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Hi, my names Mike. I'm new to this forum, or any AS forum actually. I'm 27, and I was diagnosed when I was 9 due to severe back pain/fatigue. Finally they found that I tested positive for HLA B27. I've been dealing with it ever since. My pain levels have fluctuated throughout the years, at time (though I can barely remember now) the symptoms haven't been so bad, but for a long time things have been bad, and only getting worse. I ended up getting stuck doing Construction/Landscaping for a couple years, as I had no other options, and fell into a rut with it. The abuse on my body has left a big impact. I've thrown my back out numerous times and been unable to walk etc. I was down to working only a day or 2 a week, doing lighter work, and I also started up with PT again (which helps a lot in the past). A week after starting PT I threw my back out again, and had to use a cane for 3 days just to get on my feet/walk. The pain was so intense it shifted my pain scale (and I'm already very used to being in severe pain). I threw my back out this time, by simply miss stepping in my apartment. I felt a slight pull in my lower back, and the next day when I woke up I couldn't walk.

I went to my DR and got more steroids and muscle relaxers to get through this, and it barely helped. I can literally feel my back muscles pulsating constantly, and even other muscles in my body are doing the same now. It's been a couple weeks since this most recent injury, and I'm still barely able to stand for 20 minutes, and those 20 minutes hurt, every one of them.

I'm going to PT twice a week and having no improvement. I'm going to my DR tomorrow and hopefully getting XRays. My last scan, I had no fusion yet. I think that may have changed now. I've always been afraid to try Humira or any drugs like it, for obvious reasons. I'm getting to the point where I'm considering it though. I've been fighting this for long and finally I feel like it's getting the better of me. I've begun sinking into a depression, which I haven't experienced in some time. I'm losing the strength to keep going every day. I need help getting past this.

I don't know what I should do, and could use some advice.
Please let me know what you all think.
Thanks
-Mike

Re: Considering Humira [Re: Mike19] #280780
07/17/18 12:17 AM
07/17/18 12:17 AM
Joined: May 2010
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Whidbey Island WA
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WhiteCell Offline
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WhiteCell  Offline
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Do you see a Rheumatologist?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Considering Humira [Re: Mike19] #280781
07/17/18 12:35 AM
07/17/18 12:35 AM
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Mike19 Offline OP
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Mike19  Offline OP
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Yes. Just tried to make ant appt with her but they were a month out! So I made one with my primary care instead.

In the past all I've been prescribed is PT. We talked about Humira briefly but I told her I wanted to wait on it. That was over a year ago.

Last edited by Mike19; 07/17/18 12:38 AM.
Re: Considering Humira [Re: Mike19] #280861
07/30/18 05:24 PM
07/30/18 05:24 PM
Joined: Oct 2007
Posts: 236
Ventura County, CA
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Ericsmom Offline
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Ventura County, CA
Hi Mike- so sorry you are going through this. My son has been on Enbrel first and then Humira for 11+years, since he was age 11. We were concerned about long term use of biologics also, but his ankles and knees were so swollen that he couldn't walk well anymore and was in constant pain. After weighing the pros and cons, we decided to go for it in order to help prevent more long term joint damage. He has never had any side effects from either drug and he responded so well to this class of drugs that he has been virtually pain free since starting. He does still have some occasional flare-ups, but it is typically stiffness rather than pain. At one point the Enbrel did become less effective so the Dr. switched him to Humira and that worked. Our insurance company when he first started did require him to try Methotrexate for a period before they would authorize Enbrel, I'm sure due to the cost of Enbrel. We saw no improvement with Mtx, and he discontinued its use a few months after starting Enbrel. His doctor was actually more worried about the side effects of the Mtx then about those of biologics. It sounds like you are having a really tough time right now and maybe need to consider trying something new. Research it thoroughly and talk to your Dr. My son does have blood tests every 6 months to monitor the medication. It used to be every 3 months but the Dr. dropped it to 6 months recently. The drugs are easy to administer and there is some local pain when injecting. The only time he doesn't use it is if he is sick or immunity is down for some reason. He can always tell if he goes more than a week between shots. Best wishes!

Re: Considering Humira [Re: Ericsmom] #280917
08/03/18 01:21 PM
08/03/18 01:21 PM
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Mike19 Offline OP
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Mike19  Offline OP
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Thank you so much for the information and your time! smile


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