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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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#505671 - 08/05/14 08:37 AM Re: My starting experience with Humira (pen) [Re: psr]
Nancyhou Offline
New_Member

Registered: 07/22/14
Posts: 12
You have a good positive attitude for finding relief from "something". Good luck!
How are you doing now.

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#506079 - 08/27/14 02:01 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
It has been a journey, and I know that many of your understand that feeling. I have not attempted another anti-tnf med since stopping Humira, although I recently had a full spinal MRI and recent blood work done this past week.

The MRI does show "irregularities" in my SI joints... the blood work did test positive for HLA B27. All signs are pointing to AS as a diagnosis, however, my specialist is considering doing Cortisone shots since I have not reacted positively to any anti-inflammatory medications or muscle relaxants/pain killers.

I am still unable to bend forward more than 20 degrees and experience extremely dull, aching pain throughout the day. As for finding relief, my only successful methods have been hot tubbing+swimming and take hot/cold showers. Wearing a heat pack around my back helps, but not too much. I have pain in my shoulders, neck and hips as well.

Learning to manage the pain is one benefit from all of this.
Paul

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#508175 - 12/20/14 07:13 PM Re: My starting experience with Humira (pen) [Re: psr]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
I'm a physician and I also got allergy shots as a kid, so I am absolutely not needle-phobic. With every drug I've taken, I've asked for the prefilled syringes. I prefer the control I have over the injection speed with a prefilled syringe to a pen, which injects at a constant speed. Because of a mix-up at my rheumy's office, I was once prescribed the pen for HUMIRA (I think) and so I used that for a month, which I didn't like as much (not that I threw a tantrum...I just called my rheumy's office and asked them to change it for the next fill).

Of the three anti-TNFs I've taken, I found ENBREL to be the least painful. The non-prefilled syringes hurt the least, actually. HUMIRA stings a bit more. Right now I'm on CIMZIA. The big deal with CIMZIA is that the syringe is actually a tube-within-a-tube, so you can't just hold it in your hand to warm it up quickly. The PEG moiety on the drug makes it very viscous, more so at cold temperatures. You really do have to just leave it out at room temp for at least 30 minutes before injecting it or you will get a huge bruise. I still get bruises from it, anyway (which is a minor nuisance).

A few tips to reduce stinging:
1) Have the drug at least at room temperature.
2) Make sure the alcohol has completely dried from the injection site before injecting or you will inject some alcohol into the site, which stings.
3) Make sure the bevel of the needle is facing UP.
4) Insert the needle in a quick, stabbing motion. Like removing a bandage, slow hurts more.
5) Make the injection take about 10 seconds. Fast causes bruising.

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#508178 - 12/20/14 11:30 PM Re: My starting experience with Humira (pen) [Re: psr]
WendyR Offline


Registered: 12/23/08
Posts: 5228
Loc: BC, Canada
I was interested in your comments about the difference between auto-inject pens and using a 'manual' syringe. I inject methotrexate once a week, using a regular syringe which I have to fill myself. However, after each of my hip replacement surgeries I had to use an auto-inject pen daily for ten days to inject anti-clotting drugs. They stung like hell for a while after each shot, whereas the methotrexate injections I give myself are almost painless. I did have an excellent doc teach me how to do them including using a different needle to draw up the mix than the one I poke myself with (I change needles).

I assumed the stinging was from the drug but maybe it was the auto-inject pens!
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#508422 - 01/05/15 11:17 PM Re: My starting experience with Humira (pen) [Re: MikeGinnyMD]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Thanks MikeGinnyMD, I appreciate the tips and comments.

Since stopping Humira, my specialist has recommended a trial of either Remicade or Enbrel. Remicade being the IV infusion and Enbrel the weekly shots. I'm unsure of what to do next, however, the specialist suggested Enbrel, but I am leaning towards Rem. because of the less frequent injections. He told me that they will likely do the same job, but since I did not react to Humira, it's a toss up either way.

Has anyone here tried both Enbrel and Remicade?

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#508512 - 01/08/15 07:58 PM Re: My starting experience with Humira (pen) [Re: psr]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
I tried ENBREL, HUMIRA, and I'm currently on CIMZIA.

ENBREL hurts the least. The lyophilized vials are even less painful than the prefilled syringes, but I don't recommend them because the boxes are huge and take up a lot of fridge space. I don't even know if the vials are still available.

ENBREL was my first anti-TNF and --I kid you not-- I woke up in remission the next morning after my first dose. I mean, I got out of bed, took a shower, went to shave and suddenly realized that I wasn't leaning on the sink like I usually did. And then I took a quick stock and realized that for the first time since age 16, nothing in my body hurt. That's when I literally started jumping for joy...because I could jump.

Of course when I started it in 2004, lyophilized vials that you had to reconstitute were the only form available and the dosing was twice weekly. Then they made it so that you could inject two shots once a week. Finally, the prefilled syringes came out.

It's mechanism of action is a bit different than the other anti-TNFs. With etanercept, two soluble TNF receptors are fused together using the very butt end of the IgG1 molecule. These fused TNF receptors have a markedly higher affinity for TNF-a than single soluble receptor, but they do not bind permanently to TNF, rather having a high on/off rate. Antibodies bind permanently. Whether this is relevant is a subject of some debate.

More importantly, REMICADE (infliximab) is a chimeric monoclonal antibody. About 1/4 of the antibody comes from a mouse and this raises the possibility of allergic reactions to it or the formation of neutralizing antibodies against the mouse regions of the molecule. You also have to go in every time for the infusion, which can be very inconvenient.

Also, as far as affinity for the TNF molecule, the order is that adalimumab is the least, infliximab in the middle, and golimumab and etanercept the highest.

If it were up to me, I'd try the ENBREL first and then REMICADE if you want. But if you fail that, then the good news is that there are other options in the pipeline. Secukinumab (COSENTYX) will get approval in 3-6 months, probably, and ustekinumab (STELARA) is already approved, although not for AS just yet.

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#510659 - 04/28/15 11:53 AM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
MikeGinnyMD, I would first like to thank you for your detailed reply to my story thus far - it's extremely helpful.

That's amazing that ENBREL has such amazing effects on you. How long did this work for? And are you still currently taking ENBREL?

My worry is with the frequency of injections...I would prefer to have an infusion every few months as opposed to once per week of injecting myself ( I know, it's different from what most prefer).

I am stuck with the inability to bend forward, along with hip/glute pain. They still are unsure whether I have mechanical back pain or AS...my signs point to AS. I am hoping that I can get some relief soon like you did!!

Paul

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#511057 - 05/22/15 04:38 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Most recent update from Dr. Walter Macsymowych (google him - he knows what he's talking about). He believes that I may struggle with Shermans Disease...he said that I will now begin trialing strong oral anti-inflammatory meds to reduce inflammation. I am skeptical of course, but he does not have enough evidence to diagnose me with AS. This is a good thing, however, what if the medications don't help like in the past? I have mild edema in the SI joints... but he beleives it could be a mechanical issue.

Would love to get your thoughts - thanks.

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#511574 - 06/30/15 09:49 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Corrections on the above post** Meant to write Scheuermann's disease, not Shermans!

It has now been several weeks and I have tried out the two anti-inflammatories which the specialist mentioned above suggested for this. I have very little to report. I have not had many benefits from the medications (tenoxicam and relefan).

Back to pain management and lots of hot tubbing after work for now.

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#512394 - 08/30/15 10:32 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
New update on my symptoms:

I recently returned from vacation and shortly after starting work again, I have experienced an extreme inflammatory from on the bottom of my foot. The issue is right on the ball of my foot beneath my second toe. I cannot put any weight on my foot and my entire foot is discoloured and red. My main problem is the sensitivity I am having and the extreme pain when putting pressure on it. I don't know what's wrong and it has been 2 months of wearing an air cast and avoiding weight without any improvement.

MRI=showed nothing, CT=nothing, Ultrasound=slight inflammation though unclear exactly what, X-ray=nothing.

Anyone have any suggestions or ideas? The only cause I think that may have contributed is my standing desk at work (as I can't sit due to my back).

Thanks,
Paul

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#512396 - 08/31/15 01:45 AM Re: My starting experience with Humira (pen) [Re: psr]
osja Offline
New_Member

Registered: 07/19/15
Posts: 6
Loc: New Zealand
Sorry to hear that. I don't have the answer to your particular problem but I had a problem with my heel that swollen red etc it was like that for 12 months. Nothing was found on testing. I also do get sore hips with AS and was given a cortizone shot in my hip which miraculously totally fixed my heel instantly. I'm not advocating getting a cortizone shot but it may be part of the AS. Mine was and that's why the cortizone fixed it.

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#512425 - 09/01/15 10:54 PM 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
psr: Can you take a 6 day methylprednisone taper? that might just knock this out for you.

I was dx'ed in sept 2010. I started humira in june 2013. In between those dates, I took methylpred for my flares. But I was needing it too often (every 10-13 weeks) and too, with diabetes, it raises my blood glucose. So now its good being on the Humira for me.

But since you are off the Humira, maybe try a short course of steroids.

One time when I needed the steroids for a flare, a 6-10 day course of methylpred knocked out a stubborn TMJ that I had had for months that the dentist and I had been trying to resolve in more traditional dental ways, but the steroids knocked it out and it never came back, then I started Humira and its never been back since.

I also had a really good podiatrist; I haven't needed her in years now since Humira. But she was able to help me with my feet in ways no other of my doctors could. I've had terrible foot problems over the years.

I can say ice or contrast baths helped my feet in the past more than most anything else.

Too, ultrasound, has been very helpful for me. I'm not exactly sure how or why it works, but it does. They say its deep heat, but I think there is more to it than that. I used to get it done at PT, then a chiro office, now I have a home unit, and there are times its very helpful still.

and I hear you with scans showing nothing dramatic, but still there being a huge problem. That's the way it is with this enthesitis stuff. I "injured" my ulnar wrists very badly, to the point of needing a cortisone injection in one once and couldn't use that hand for 2-3 years, and yet the MRI showed very little if anything. I've read that there is a ligament in there that can unravel and only be seen with exploratory surgery, not any kind of imaging will pick it up. Last fall I needed to go back to specialists for the other ulnar wrist and I was told that the cartilage in there can get inflamed.

its complicated, but things like ice, ultrasound, steroids, PT can fix or at least settle down the problem even when the problem can't exactly be pinpointed.

and time...sometimes time is the only real thing that works...but those other things can shorten the 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)

Top
#512799 - 09/27/15 09:36 PM Re: My starting experience with Humira (pen) [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Thank you for the replies osja and Sue22. I appreciate your advice and thoughts.

It has now been a few months since the starting of this odd-ball foot pain and I have finally received a diagnosis and even began to experience some relief, although I am far from perfect. Morton's Neuroma is what they've diagnosed me with.

This type of nerve pain was excruciating and I would never wish it upon anyone! Through physio, cortisone shots, and contrast baths (like you mentioned Sue22), the healing process has been slow but steady.

I am yet from repairing my back problems though. I will have to give methylpred a shot.. I'm just getting lots of flaring up in my neck/hips/low back. It is a dull achey feeling that hasn't left in 4 years now. I know most of you know exactly what i'm talking about.

The support on this forum has been amazing - thank you everyone.

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