Enbrel side effects...or paranoia??

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Auroraland
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/23/2006 5:10 PM (GMT -7)   
HI all!
 
I want to say that this is the most supportive group I have ever encountered on the web!!  I have been browsing comments for a couple days now and have gained some wonderful insight and tips from doing so...thanks! 
 
I am new to this forum and new to Enbrel also.  I have psoriasis (have had for about a year) and now recently diagnosed with accute pa.  I had previously been using dovonex and cortisoidsteriods for psoriasis control but saw no significant improvment.  My joints are just now beginning to be effected so my derm opted to put me on Enbrel.  So here I am...
 
I have been on it for a little over a month and am starting to experience what I think are side effects.  about 48 hours after the injections I get a nagging headache that does not respond to med (advil, excedrin ect...).  and recently accompanied by a sore throat and extreme fatigue.  Along with this comes a palm sized injection site reaction that is quite raised and itchy.  Does this sound familar to anyone??  I am thinking it is semi-normal to have such a reaction but would love any input to put my mind at ease.  At what point are these reactions bad and need attention?  I feel I am unable to read my body right now...help!
 
I am quite a sceptic when it comes to western medicine and am reading as much as I can on nutritional remedy's for cronic diseases...hopeing someday to be able to control the flare ups with minimal help from the doc's...dreaming?...maybe.  I was able to control my psoriasis for 5 months with dietary and herbal remedies but then had a flare up and now the joints are involved, so enters the enbrel.
 
Anyway, sorry for the novel...but anyfeed back would be wonderful!  I am so glad to know that there are others out there that are where I am...it is encouraging during such a scarry, unknown, skeptical time to have people to talk to!  Thank you!!!
 
Aurora
 
 

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/23/2006 6:52 PM (GMT -7)   
Hey Aurora, welcome to healing well, I'm glad you found us. I have psoriasis and pa also. I have been on Enbrel for over a year now. I still get a site reaction that is red raised and itchy. It looks almost like a bee sting to me. I have called the Enliven nurses a lot just to make sure that this is "normal" and they assure me it is. I also get a lot of bruising at the site too, so if you happen to get bruises at the injection site, that is also normal. I haven't however gotten the sore throat or fatigue. Does this happen each time? Does it go away? I have noticed that I get more headaches, it's not a migraine, but it is a headache.

There are others on this site that will lend their 2cents, if you are still uncomfortable with what is going on with you, please call the Enliven nurses. They are very very helpful... Good luck to you, and I hope you continue to keep posting with us - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/23/2006 10:41 PM (GMT -7)   
Welcome Aurora & Best Wishes while on Enbrel.  A good thing I can say about it is that it got me through a year of nursing school & was able to finish.  So it did do a world of good for my RA for a while.
 
Seems to be that the 50mg single syringes cause more reactions like you describe.  There are 25mg syringes twice weekly that have an acidity weeker than the 50mg's.  When the solute is injected not deep enough....it can dwell in the uppermost skin layer, thus cause itching/redness/burning. This also can last 3 to 5 days as well. But itching,erythema,burning,pain are what an injection site reaction is. You can apply a cool pack to the site after for 10 minutes or even before the injection. (this will constrict the blood vessels and prevent some of the reactions).
 
Where are you currently injecting?  The abdomen is a very soft and safe area and I've noticed that my Humira injections (which STING) are the best in the abdomen and do not bruise/swell/turn red.
 
Headaches YES...that is common. Cool compresses to the head, ice packs, darkness, and even a little caffeine may help. Tell the Dr. too!
There runs a risk of chronic sinus and respiratory issues on Enbrel.  Mostly are just annoying and benign...but again, tell the doc.  I take it you have had Xrays and TB tests?  If you start to get a hacking dry cough or green mucus you need to see a doc.  You don't have asthma or COPD do you?
Oh...also, if you are sensitive or allergic to LATEX....that could be the cause of the skin  issue! And Latex allergies can cause throat problems (tight, swelling, pain).
 
But to put your mind at ease, all of the things you describe are indeed side effects and expected reactions from Enbrel.
 
A tip: after you inject all of the Enbrel, let the needle remain in place without moving it for another 10 seconds.  This will prevent the med from leaking & causing irritation and from spilling into the upper skin layers.
@ your next doc visit, do mention the respiratory symptoms.
 
Good to have you @ HW & welcome again!!!!  Best wishes.
Erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Auroraland
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/24/2006 2:18 PM (GMT -7)   
Thank you both so much for the input!!  It is all very helpful!  I have indeed been icing the injection area before and after injection and found that this indeed does ease the reactions a little, they tend to not get as large...I will try the needle for 10 sec trick...cause it usually does leak a little (never thought of that as an irritant).  I do also get bruses but not too bad, the size of them depends on how extreme my reactions are.  Enlivin services has been helpful, but I feel it is hard to judge how far this can go before it is bad.  Just keep everyone updated, I guess.
 
I take 2 50mg injections a week, so a cut back to the 25mg is not an option right now...I have noticed that the 50mg sting, no matter where they go (abs are slightly less stingy). 
I have thought about the latex allergy issue and will let my doc know I have a sore throat. 
 
They do know all the other reactions I have had and just put me on Zyrtec to try and counteract some of the pain and discomfort at the site.  Last night was the first time using it with the injection so we will see what developes.  Usually the reaction is delayed..not showing up for 24 or more hours, slowly grows and then is almost gone in 4 days just in time for my next one.
 
The good news is that my joint pain is almost non-exsistant (I was having extreme back spasms prior to enbrel).  I am not as convinced with my hands and feet, they have their good and bad days, like before.  It will be exciting to be able to were sandals this summer if this treatment works for me! 
 
Thank you again for all the input!  Exactly what I needed to hear! I wish you all the best in health today...pain free and wonderful!  I will be sure to keep in touch!
 
Aurora

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/29/2006 12:09 PM (GMT -7)   
I hit the 50mg of Enbrel on Sunday evenings, followed by a nice Belgium style beer ... or 2. That helps me get over the nausa that I often get, which, I am almost certain, is all in my head!
I've only once gotten injection site issues in the past year. It stings and hurts like crazy, many regulars on this board have heard me whine about that. I didn't see it mentioned, but leave the Enbrel out for a bit before you inject. I have found it to be worse when it is cold right out of the 'fridge. I also push that little bit of air in the syringe out so that I'm not pumping that in as well.

The absolute only way I can deal with the injections is to recall how %$@#ing bad I felt before the drugs kicked in, and while the injections suck (I also shoot up MTX), they suck a lot less than RA affects.

I know I'm not supposed to drink, but I shouldn't have to shoot up either ... Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/29/2006 3:38 PM (GMT -7)   

hah! Craig you're the best.

i thought that MTX causes bad nausea?

i like your Enbrel chaser.  i'm just as bad...making MiraLax martinis.

Hey....WE GOTTA DO WHAT WE GOTTA DO....right?

us arthritics are a rootin' tootin' crowd.  drinkin' up & shootin' up. we live the life of the celebrity. very glamorous. LOL.

you're right...that air has to get pushed out & the syringe should be left in room temp before injecting.

when people inject the entire syringe without first getting the air pocket out...the site looks like a raised be sting.

Craig...in comparison on how bad the 50mgs Enbrel burn, how are the MTX injections? same or worse? i might have to add MTX via injection before June. i'll find out next week. docs want to try that combo (Humira & MTX w/Imuran) before Remicade i think.

take care.

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/30/2006 6:25 AM (GMT -7)   
The MTX shots are nothing, the needles are thinner than the pre-filled Enbrel and it does not burn at all. I can pump the MTX in pretty fast.
The MTX may cause nausea, I can't really be sure. I was over at a friend's the other day and they had to get out a needle for their diabetic cat. Immeadiatly I felt nausea, exactly the same as around shot time for me.

I know it is mostly in my head ... Craig eyes

Auroraland
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/30/2006 12:01 PM (GMT -7)   
I agree...many of our fears have physical symptoms that are totally in our heads...I have exteme anxiety before my injections and it ends up being not so bad but then I thnk that I am getting a headache or feel sick to my stomach...our minds a very good at playing tricks on us that is for sure! 
 
Thanks Craig for the input...I do leave the needles out for up to 1/2 hour (and remove the air), the stinging in less the warmer it is.  But I whine alot about that...I have noticed that when I ice the area before and after all is better. 
 
I am on Zrytec now to control some of the injection site reactions...works great!!  All I get now at the site is a small raised area no larger than a bug bite or bee sting.  My doc thinks I am allergic to one of the contents in the needle or the latex, so for now, all is well. 
 
(Great idea on the Enbrel chaser!!  I have to admit...I think that would work quite well!  :-)  )
 
Enjoy the day!
Aurora

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/30/2006 1:09 PM (GMT -7)   
tongue  Oh NO! LOL. what a bunch of lightweights! hah! just kidding.
i'm just picturing the episode of "Everybody Loves Raymond" when he's always passing out at the site of blood or needles.
 
i've noticed that it is true...in the hospital i used to hear patients say that they get nauseous or feel like they'll pass out during or right before a blood-draw or injection. it is actually a vaso-vagal effect (kinda like a flight or flight response) but it is totally physiological.  there was just a study conducted about this too.
if you feel nauseous and or lightheaded when injection/IV's or blood draws; if you squeeze and contract say your arm muscles or cross your legs or contract your leg muscles...something in the blood supply reverses this weird phenomena.  but  is real....even if you just "see" a procedure being done or see needles or blood or whatever.  interesting stuff.
 
Aurora...be careful withthe latex allergy thing.  With Latex allergies, the more exposure you have to Latex the worse the allergy can get.  Unlike most allergies where the more exposure you get, the allergy lessens or you "grow out of it", the Latex one is much different.  For example, many Dr.s & nurses develope Latex allergies from USING GLOVES all the years. And they never had a problem before...but just the constant exposure to it brings it on.  Keep Benedryl on hand too. It's OTC at most drugstores, just to have on hand.
I wish you continued success witht he Enbrel.
 
Craig...thanks for the info on the MTX.  I think I'm going to opt for that first before I go and dedicate myself to Remicade. Much appreciated.
 
Take care,
Erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/31/2006 10:53 AM (GMT -7)   
I've been taking Enbrel for about a month now.  I haven't noticed any nausea or a sore throat, but the last couple of injections have left a mild reaction.  Just a round rash, slightly raised.  Doesn't even hurt.  I just figured it was an injection site reaction; they tend to go away in a bout a week, just in time for the next injection :)
 
Elcamino

Auroraland
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 4/1/2006 10:30 PM (GMT -7)   
I am a wimp...I admit.  The sight of blood or the thought of needles makes me a little woosy.  I figure Enbrel is the worlds way of having me face one of my bigger fears...funny how it works like that!
 
Erin...thanks for the heads up on the latex allergy exposure issue.  I have done a bit of research on the topic and am keeping an eye out on my reactions to make sure they don't escilate (per request of my derm also). 
 
I also may try the muscle trick and see if it help the woosy auto-reaction I get...keep ya posted.
 
My site reactions are tolerable now with the Zrytec and I keep the Bene handy too.  It has been about 6 weeks and I am not seeing any skin improvements...I guess it takes up to three months to help
the skin...??
 
Hope all are well!
Aurora

starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 4/1/2006 10:52 PM (GMT -7)   
I'm on the 25 mg x 2 a week Enbrel. I tried the 50 mg shot one time and won't do it again! For some reason, the needle seems duller than the 25 mg shot and it definitely burned! When the 50 mg shot first came out, there was a big brouhaha cuz they definitely were different.

I get bruises on my thighs, rarely on my stomach (more cushion there I guess :-) ). I do get a small site reaction now and again (red, itchy thing at the injection point), but its generally gone within a day or so. I'm prone to sinus infections and when I first started Enbrel (2 years ago) I would get some doozies. I believe upper respiratory issues are a side effect of Enbrel (not positive on that), but sinus infections are. I would go off, clear up the sinuses and then go right back on.

It took about 3 months for me to feel the effects of the Enbrel (I have AS & RA) - your mileage may vary, so don't give up or get discouraged. Everyone is different and will react sooner or later...literally.

Hang in there - never in a million years did I think I would ever be giving myself injections, I'm sure you didn't either. It does take a bit of adjusting too, don't you think?

Take care, Sherree
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