Chances of reaction with Humira or Orencia?

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starrnr
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Date Joined Dec 2005
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   Posted 11/26/2007 9:50 PM (GMT -7)   
Realizing that all of the biologics are not perfect and that you can have a reaction to all of them, I'm wondering about something. I have to decide the next step in my journey of biologics.

I was on Enbrel for almost 2 years -- no problems with it other than it lost its effectiveness after I had a major dental infection. Switched to Remicade -- no problems for 1-1/2 years until this past week, when I had a doozy of a reaction. I never want to experience that again.

Humira is self-injected, Orencia is another infusion. I'm wondering if I'd be 'safer' starting with the Humira. Orencia is still too new and I'm not sure of its effectiveness yet for both RA & AS.

If I decide on the Humira, should I do my shots at the doctors office -- just in case (reaction)?

I'm confused, scared and could use some good advice here. I know we are all different and react to things differently, but we're all going thru this, one way or another.

I'm all ears...

Thanks.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


tinglebell
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Date Joined Apr 2007
Total Posts : 531
   Posted 11/26/2007 10:06 PM (GMT -7)   
I make sure that I have someone in the next room when I give myself my humira shots. A lot of folks take their first shots at their doctors office. Good luck!
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 11/26/2007 10:29 PM (GMT -7)   
Most medical practices prescribing Humira want the first injection to be instructed and supervised by someone on their staff. The reason is twofold: to make sure the patient has a clear uderstanding of how to do the injection and secondly to monitor the patient for a reaction. Being a licensed professional myself, my GI still wanted me to do my loading dose of Humira at his facility since I had some minor reactions to Remicade. I agreed with that reasoning. Since the loading dose I have given myself all my injections at home alone - noone around. I have not had any problems.

I have found I really ENJOY being able to do my Humira injections at home, free from the 1/2 day regime every 6 weeks at the infusion center to get Remicade. I agree with your thinking regarding Humira versa Orencia. Best wishes as you make your decision.

PS - Do you think your "chills" episodes during your [was it?] August infusion of Remicade was a sign of what was to come with your last violent reaction to Remicade? The scenario described was exactly what my GI was afraid was going to happen to me as each Remicade infusion started a worse series of post-infusion problems worse than the previous.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 11/27/2007 9:41 AM (GMT -7)   
Ides, you make a lot of sense (as do you Tinglebell). I really liked the freedom of the Enbrel shots - I did them at home or on the road (when traveling) and I didn't have to carve out 3 hours of my day to do them. I don't have a problem with self-injecting myself with the Humira (although I hear the pens are not the most comfortable thing in the world), I'm more worried about a reaction.

Ides, do you take MTX along with your Humira? I really want to get off of that shot if I can, but don't know if my rheumy will go for it.

As for your PS...you know, I got to thinking about that this weekend. I do believe that those "chills" may have been a precursor to what happened Wednesday. The last 2 infusions I had, I got the chills. The Oncology Nurses brought nice warm blankets and then I was fine. I had no other reactions during those infusions. I never mentioned it though and probably should have. Now I know... Never, ever had that happen with the Enbrel. Live and learn I guess.

Thanks - I see my rheumy tomorrow, we have alot to discuss. I'll let you know what happens and what, if anything, we decide.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/27/2007 6:00 PM (GMT -7)   
I take Imuran instead of MTX. My GI put me on that before all the AS stuff was diagnosed. My rheumy has mentioned MTX but I do like to have a glass of wine or cocktail from time to time. MTX is hard on the liver and in my opinion drinking while taking it is not a good idea.

BTW, I use the Humira pen and have NEVER had any discomfort from any of the injections. I leave it out for 30 minutes prior to injection. Then again, the PA that observed the loading dose series said I was the first person that had no complaints about some or alot of stinging with the pen.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 11/28/2007 5:36 PM (GMT -7)   
Hey there starrnr.. sorry for my late reply, have been behind the times these days.. anyway - how'd your appt go?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 11/30/2007 9:48 PM (GMT -7)   
Hey Ducky -- how are you doing? It's been a while since I've "seen" you; hope you're hanging in there.

Doctor's appointment moved to next Wednesday as my rheumy was sick. I can really feel the lack of Remicade/MTX in my body...everything is starting to hurt. I'm not a happy camper! Will let you know how things go - fingers crossed we decide on some sort of treatment plan soon!

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 12/5/2007 3:27 PM (GMT -7)   
I was on remicade for about a year a the closes place for me to have them done was a two hour drive each way.I built up what they call anti-serum sickness so had to come off of it. I was then put on Humira I had only wished that I could have started out on the Humira. I did my loading dose in my Rheumy's office and then I did them at home and I have no problems at all it does get a little red around the injection site and it does sting a little going in but that is all. Good luck and let us know what you choose to do.
Curley
.........
 


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 12/5/2007 4:42 PM (GMT -7)   
Hey S. - Did you have your dr's appt? How did it go?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/6/2007 9:19 PM (GMT -7)   
Must update what I wrote earlier~~
Gave myself my Humira injection on Monday. Felt somewhat ill Tueday night. Awoke Wednesday in the worse pain and with a low grade fever. All my large joints felt as if they were going to explode. I absolutely could not move without excruciating pain. Called my GI and because I had no other symptoms of illness, he felt I was having a serum sickness reaction to Humira. Now on Prednisone and Vicodin trying to get through this. I suspect that this is the last anti-TNF med I will be allowed to take. My GI feels that my body reacts to the foreign proteins in this class of meds.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 12/6/2007 9:37 PM (GMT -7)   
I saw my rheumy yesterday. We had a good long chat on everything that's happened, reviewed my blood tests, talked pain management (I'm past the manageable stage) and treatments.

I'm going with the Humira. Seems it's the best fit for me, for now, but we'll see. I'm losing patience with these diseases and the medicines we have to put up with. I'm staying on the MTX for the immediate future (rats), but at the same time, the MTX does help my RA in my hands immensely. I finally get to take my MTX shot tomorrow (who knew I'd be excited to inject neon yellow stuff into my belly...go figure).

My blood tests are fine; I was concerned about my liver and kidney tests, but they came back just fine. Naturally, I'm in a flare and hurt like heck and my sed rates and related tests came back normal (as always). I think those tests are a waste of time personally (for me anyway).

Ides, I'm so sorry.. sure it's not the flu or some other infection floating around? What options do you have to look into now? I feel for you... Oh, I talked to my doctor about the 2 prior infusions where I got really cold, he said it was probably a precursor to the violent reaction I had and I should've said something. He said I could have been pre-medicated before my infusions, or we could've stopped it back then, had he known. As I said before, live and learn.

So, Humira it is in the next couple of weeks. First shot (at my request and he agreed) will be at my rheumy's office - I have this abject fear of reactions now. I've requested the pre-filled syringe rather than the injectapen thingy. We'll see how it goes.

Nite all...
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 12/7/2007 10:21 AM (GMT -7)   
starrnr said...

I've requested the pre-filled syringe rather than the injectapen thingy.

Nite all...

The "inject-a-pen" is a beautiful thing. When I used the pre-filled syringe, I found it made me a big baby, when it started to sting a bit, I stopped and waited. Makes taking the shot an event. Also, the needle on the pre-filled is larger than the pen, and I had to really poke myself to get it in.
I hope you have great success with either, good luck.

... still MTX and Enrel free, 6 months now ... Craig

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/7/2007 5:08 PM (GMT -7)   
S~
No, not the flu. Definitely a serum sickness reaction to the protein in the Humira. Now on a quick taper of prednisone. I absolutely understand your losing patience with these diseases and the medicines we have to put up with. I feel the same way plus I am now quite fearful as to what the future holds. When I saw my rheumy on Tuesday, he looked at the tendons in my right knee [he uses ultrasound imaging to do that in his office]. A couple of them have pretty severe damage occuring from the Crohn's/AS. One has so much calcification at the insertion point he was amazed that I could walk as well as I do on it. He said I need medication to get the enthesitis under control, that the Humira was not doing the job. I have no clue what he and the GI will come up with considering my problem with the foreign proteins.

I hope the Humira really does the trick for you. Much relief from it!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 12/7/2007 5:22 PM (GMT -7)   
Ides, what about the Rituxan (sp?) - that's a pretty heavy duty treatment and we are (rheumy & I) saving that for the absolute last resort. It seems though, you're at the last resort phase. I wish there was something I could suggest or even say, other than I understand how it goes.

These past couple of weeks have really shown me how well the med's worked and it just kills me to have to admit that and accept that I need to take something to function. Sad, isn't it.

Let me know what you decide...I may have to follow in your footsteps! We'll creak along together.

Enjoy your weekend - as best as you can.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/7/2007 7:06 PM (GMT -7)   
Geez you guys.. sounds like you are both having a rough go of it.. Ides are you feeling better? ~S, when do you get your 1st Humira injection? Craig! Long to no see!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted Today 12:18 PM (GMT -7)   
hey star,
best wishes w/ Humira.  i fancied the the regular syringes, personally the "slower" i injected the med (abdomen always) the less it STUNG!  burns like a mother! {sorta' like the bigger Enbrel doses. (wow Enbrel...seems like sooo long ago!).
i was on Enbrel for 2 yrs and Humira for 2 years.
never had any significant reaction from either. of course some anemia & low wbc's...but nothing scary.
 
serum sickness is a nightmare.  luckily my GI didn't d/c the Remicade after that happened last spring.  was about my 18th infusion by then.
they stopped the IV, ran saline, gave a bunch of meds to counteract the infusion reaction....but i continued after that. 
hmm...i remember i got super dizzy, nauseous, chest tightening and my BP dipped to 86/60...
my doc has me do this regimen of pre-pre-medicating and "post" medicating for the remicade reactions...4 days on pred, tylenol & benedryl before the remicade and 4 days after.
 
i feel you'll do fine w/ the Humira.  when does your 1st shipment come? best wishes!

Raven67
Regular Member


Date Joined Sep 2007
Total Posts : 155
   Posted Today 9:05 PM (GMT -7)   

Hi,

Just reading and wondering, does anyone know if you can inject Mtx in the abdomen.  I've been injecting in the leg as this is where I inject insulin at times but would much rather use my stomach.  My Rheumy never said either way, I think he just figured that since I was diabetic I would know what to do.

Chow,

Raven :-)


When you get to the end of your rope, tie a not and hang on!!!
 
Current Diagnosis-Rheumatoid Arthritis, Insulin Dependent Diabetes, Osteoarthritis right knee, Osteoporosis.
Current Meds-Methotrexate 15mg weekly, Hydroquinine 200 mg BID, Celebrex, Cesamet, Oxycontin 20 mg BID, Lorazepam 2 mg dly Actonel weekly, Insulin-Humalog 35 units TID and Lantus 40 units BID.


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted Today 9:45 PM (GMT -7)   
Raven - I inject probably 90% of the time in my stomach - alternating sides each week. I only inject in my upper thighs in the winter as I tend to bruise there and it looks horrid in the summertime! I will have to come up with a new rotation scheme now that I'm going to be on Humira. Oh yippee!

Erin - it is so good to see you. I had one 50 mg Enbrel shot after they came out and demanded to go back on the 2x a week do it yourself shots. Holy smokes it hurt!

We're really not sure why I had the reaction as I never had a reaction to the Enbrel and since I have absolutely no desire to find out again, on to Humira we go. I should have it within the week (fingers crossed).

I'm tired of this stuff, as we all are...goodness I wish there was another way to deal with this stuff...*sigh* eyes
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily

Post Edited (starrnr) : 12/11/2007 9:53:43 PM (GMT-7)


babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 12/12/2007 8:50 PM (GMT -7)   
Hi Starrnr,
Quick question if you don't mind...I had my first Enbrel injection last week in the doc's office. Then came down with a nasty cold and had to go on a z-pack. Now that I'm starting to feel better and am finished with the antibiotics, time to do Enbrel #2. First one didn't hurt at all, used the auto-injector in my stomach..but kind of nervous to do it now. Any idea why yours hurt so badly?
Thanks,
Jody

starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 12/12/2007 10:06 PM (GMT -7)   
I didn't have the auto-injector (it wasn't out yet), I used the 50 mg pre-filled syringe. Everyone complained about that shot. It had the covered tip and the consensus was that cover (latex?) made the tip of the needle a bit dull - not quite sure tho.

I hear the auto-injector is not bad - just take a breath and relax. I do know the more you tense up, especially if you hold your breath, it will be worse. Don't forget to rotate the injection site as well...very important.

By the way, did you tell your rheumy that you were on the Zpak (unless he/she prescribed it) and you're done? The doc needs to know - he/she may have you wait a week before your next injection (mine makes me wait). Just a thought.

Good luck, you'll be fine!
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Starting Humira 12/07, currently .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


Sunpuppy
New Member


Date Joined Dec 2007
Total Posts : 15
   Posted 12/20/2007 2:47 AM (GMT -7)   
Hi, I'm new to the forum but would like to respond to your question regarding Humira.  I've been on Humira for nearly two years doing my own injections (syringe) at home.  I've never had a bad reaction to it.  I moved to a different state and the ins co. there put me on Enbrel 4 X a month instead of the Humira which was not on their formulary and after 6 weeks I noticed hair loss.  They put me back on Humira and the hair loss continued although I'd never had the problem before the six wks of Enbrel. Other than the hair thinning & change in texture and occasionaly little red dots appear on my face.  Both are unpleasant but certainly worth tolerating in order to be nearly pain free although recently I notice less effectiveness and feeling more stiffness and soreness in my joints. At my last rhummy appt. she discussed the possibility of me changing to Remicade or Orencia but I'm scared to use either. Has anyone out there had the hair loss experience and also any suggestions on a good pill form medication to take along with the injections of Humira?  I'm currently on Lodine and it works just so so.  Thanks! 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/20/2007 10:55 AM (GMT -7)   
hi & welcome Sunpuppy!
we share similar scenarios.  i've done 2 years time both on enbrel and then humira.
with both meds...it seemed like once i hit close to that 2 year mark, the effectiveness was just not like it used to be.
the opinions of both my GI & rheummy were that yeah, they can plateau after years & a person could just become sorta' "immune" to it.
 
so i quickly moved onto Remicade. it's been a year & 1/2 now.
the likelihood of this "plateau" effect is less w/ Remicade as you can keep on increasing the dose!  so...one can be on Remicade for many many years.
i never hit a remission yet w/ Remicade, however i do feel significant relief initially after the infusion.
 
hair?  it's thinned & it kinda "chunks" out of my head when i brush it...but no biggie.
 
w/ your pain meds...take into consideration how long you've been on lodine; you may be a bit tolerant to it.
 
please keep us posted on how you're doing.
regards,
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


Sunpuppy
New Member


Date Joined Dec 2007
Total Posts : 15
   Posted 12/20/2007 3:15 PM (GMT -7)   

Hello Erin and thanks for responding.  Yes, it does sound like we have similar scenarios.  It's nice to know that it isn't just me that has lost hair from being on Humira/Enbrel.  I have always had fine hair but a lot of it and now it is fine and not so much of it to the point that if I put it in a ponytail that the little tail isn't as big around as a dime...that's sad :(  I was very impressed with Humira up untill the past few months and now it seems as though it isn't doing as much for me. It used to be worth the hassle of getting it approved by my ins company and even dealing with the huge copays when none of the assistance programs will qualify me (any tips on that issue?) but when the quality of it medication becomes less and I'm headed to the point of almost needing a wig - it almost seems not worth the trouble.  I was previously on Arava and I must admit that in comparison to the effectiveness of the Humira these days I think I'd rather be on the Arava.  I checked with my ins company on the Remicade and I thought Humira was expensive but it's even more expensive plus I'm terrified of taking it. I'm open for any suggestions out there ;)  I appreciate conversation with you and look forward to talking to you again soon.  Thanks! 

PS. I forgot to add that I'm not on any pain medications so maybe my iodine level may not be as high as if I were, right?


Post Edited (Sunpuppy) : 12/20/2007 3:19:54 PM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/20/2007 9:40 PM (GMT -7)   
oops! i made a mistake! i thought i read you took LODINE (i'm sorry).
hmmm...i qualified for free humira; and Remicade is covered through Medicaid....?????....hmmm, oh, charity care through hospitals also can pick up the cost of the Remicade ( i used to do that before i brought my own vials of remicade with me).
i'm sure other members here will share some input about this. i don't know too much right now about the different assistances.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


Sunpuppy
New Member


Date Joined Dec 2007
Total Posts : 15
   Posted 12/21/2007 12:30 AM (GMT -7)   
Yes, I'm on Lodine, guess I just wasn't putting it in the same category as pain pills like Vicodin, etc. I couldn't qualify for free
anything but yet can't afford the expensive cost involved.  It's not a good place to be when you're not rich enough to pay for the high cost to treat the RA but not poor enough to qualify for assistance.  Maybe I haven't tried to qualify with the right programs.  Tried the mfgr & a few others but got shot down pretty quickly.  Thanks for your advise, hope to talk to you again.
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