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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: 89
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: 89
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: 89
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: 89
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: 89
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: 89
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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