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#501932 - 03/29/14 07:14 PM My starting experience with Humira (pen)
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
My name is Paul and I mentioned in a previous post I would update people every few weeks on my experience with Humira. FYI, I am a 25 y/o male - diagnosed 6 months ago after a long 4 year journey of hell with back pain like others. I'll be keeping an update log here for people to read on how Humira affects me for the next little while. I hesitated for months on starting this stuff, but i can't take the pain any longer. Like most of you on here, AS is extremely exhausting and debilitating. I've had to quit jobs, stop all my sports and as an active person, its been difficult. So i'm praying this stuff works!



First Injection March 8/14:

I built up the level of pain of the injection with the pen, however, it stings obviously! It was not unbearable at all. I simply pinched some fat on my thigh and did the shot and took a deep breath before and held it in for 10 seconds. It's important to get your head psyched that this WILL eventually help a lot. I had hardly any skin irritation and iced the area after for about 5 mins and then was totally fine after. Nothing else to report.

Second Injection March 22/14:

I was told I should let the drug get to room temperature before injecting - but after doing that this time, I found it actually stung a bit more for some reason. This shot stung quite a bit, but I injected the other leg this time. A bit more irritation this time around the area but nothing that bad at all. Since the previous injection I haven't felt any improvement just quite yet. Remaining hopeful that it will start to work soon. I am in my 3rd week and will do my next shot on April 5/14. Still experiencing pain when sitting at work and unable to bend forward to tie shoes or stretch. I am not taking advil much at all, and find hot showers are still the only things that help me with pain management.

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#501950 - 03/30/14 07:44 PM Re: My starting experience with Humira (pen) [Re: psr]
Timo Offline


Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
Hi Paul. Remember that everyone is wired differently and react to medicines/procedures etc in different ways.
I was on Humira for 5 months and hardly noticed any difference so I stopped. Others take one injection of Humira and get fantastic results. Excellent for them!
Some people here have tried 3,4,5 different biologics for various reasons.

I hope you get great pain relief!
_________________________
Timo

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#501973 - 03/31/14 02:29 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Yes thank you. I definitely hope within the next few months that I experience relief. What do you do now that you have not found relief of humira?

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#501984 - 04/01/14 12:07 AM Re: My starting experience with Humira (pen) [Re: psr]
Timo Offline


Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
Well......I'm taking just a 200 Ibuprophen once every 2 days or so. The doctors don't want me to take much of anything until they find out what's happening to my system.
Hasn't been too bad so that's good.
_________________________
Timo

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#502300 - 04/08/14 04:55 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Third Injection: April 5/2014.

The injection wasn't as bad as the last one - i'm finding that if I take out the pen from the fridge around 1-2 hours before using it, it actually hurts a bit less. Still no new updates or improvements yet to report.

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#502373 - 04/10/14 11:53 PM Re: My starting experience with Humira (pen) [Re: psr]
Smiletoday Offline
Second_Degree_AS_Kicker

Registered: 08/22/13
Posts: 215
Loc: So cal
Thanks for giving updates. I don't take biologics but if I ever need them I'll be thankful for posts like yours to compare my experience to. I hope you start improving soon. You've been through a lot and I hope things start to ease up soon.
_________________________
Everything is okay. Trust yourself, and do not live from a place of fear.

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#502647 - 04/21/14 08:17 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Fourth Injection: April 19, 2014:left leg

This most recent injection, I found it be again quite painful but it wasn't unbearable. I take a deep breath in and give'r! "this pain is temporary and will help me in the long run" is what I tell myself. As weird as this may sound, I have found my left leg to be more painful than my right. I have been injecting the auto-injector pen into my upper/side thigh area. Maybe it is because of the way I hold the fat but it does seem to hurt just a tiny bit more. The pain level of the injection is only bad for about 15 seconds and then it eases up. I have been icing it immediately after for about 5-10 minutes. I have been trying to stay as positive as possible throughout these initial weeks are Humira treatment. Having said that, I have not experienced significant relief yet. On my days out of the office I find my back does usually feel less agitated than when I am sitting on and off at work on the computer/phones. As for my NSD/LSD - I have been cheating here and there (with eating rice and sushi, and very very occasionally pasta). I limit starches though - and I focus largely on eating veggies, chicken, turkey, dried fruit and eggs/yogurt. FYI - I did cut out all dairy for 6 months but I didn't find any difference after adding it back into my diet.

Smiletoday, thank you for the sympathy and hopefulness. I too am really hoping to find relief from Humira soon! For any questions, anyone can feel free to message me but I may not be quick to reply (but i will reply!)


More updates to follow in two weeks or so.
-Paul

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#503548 - 05/20/14 07:05 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Hi everyone,

I didn't update the last two injections right away because I haven't had much to update…

Most recent, and potentially last injection : May 16, 2014 Left leg

This injection was painful, but it's 10 seconds of pain and followed by ice. I can't lie, I really have not experienced the results I had hoped over my journey with Humira thus far. I know that everyone reacts differently to the drug, but I am now starting to wonder that it may not work for me as well as others at all. I am still unable to bend forward (ex to tie shoes). My overall pain level remains at around 4 or 5/10 throughout the day. I find that I can enjoy walking and swimming only. However, if I do more than a few laps of swimming, my shoulder joints and hips begin to slowly flare or become tired. FYI, I have experimented many times with slowly working up to swimming longer laps or walking longer, but I have found that I am fragile and even when I take things slow, I tend to pay for it if I go for too long. I have found a balance for managing my pain levels when doing any kind of activity. Working out with weights is fully out of the question with the fear of straining forward. Running is also not going to work for a while as well. Soaking in a hot tub and treading water actually seem to help the most. I'll also lay on my back with my knees in the air in the steam room or on any surface which relieves all pressure. Unfortunately, Humira has not allowed for my range of motion to change much at all (for bending forward and back). Limiting my sitting always helps me - but sometimes at work it is unavoidable.

It is a confusing time in my life right now. I am not in the most pain I have had, however, the lingering effects of this back pain/hip/buttock pain has been more than difficult to diagnose over the years. This is why I have seen countless specialists and had many tests to conclude that I do in fact have the early signs of AS.
My rheumy has decided that since Humira has had almost no effect, that trying a different antiTNF may not be the best option. Usually, it is wise to switch to another anti TNF after your body becomes used to the first drug. I will be seeing a pain specialist in the next few weeks and hope to have more information. If there is anyone who has suggestions from their experiences, I would appreciate a PM or a post on this thread.

Thank you all
Paul

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#503615 - 05/23/14 01:02 AM Re: My starting experience with Humira (pen) [Re: psr]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
I've been on Humira for almost a year now.

Initially I had higher highs and then lower lows on the Humira. Worked really well in week 1, not so much in week 2.

The rheumy said what is typical is that my flares will become less and less over time.

A year later, the high I get from the injection is less, but the second week symptoms are not as severe as they once were.

It can take some time. Read the Humira packaging and you'll see how long they say to give it; don't think you / your doctor have given it enough time.

Too, I know a lot of people here who had little to no positive effects on one biologic that had great results on another. What's the harm in trying would be the argument that I'd use with your doctor. If it doesn't work, what has been lost. But if it does work, isn't it worth it to try?

I had a third point, but can't remember it…if I do, I'll post it later.
_________________________

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)

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#503921 - 06/04/14 03:21 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Thank you for your input, it is appreciated.

I have given it some more time and a few more injections, however, I have experienced literally no positive effects. I will give it some more time to be absolutely sure.

The idea of giving a different anti-tnf a shot might be a good option which I will be considering. We are all different, right?!

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