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Hi Everyone,

 
I have been reading many, many posts but unfortunately I am still feeling so low regarding injecting enbrel. I have had RA for 4 years and was managing fine with hydrochloroquine, methotrexate and prednisone until I got really ill in January '08 with c diff which many of these drugs predispose you to. I then had to take several courses of antibiotics and stop all RA meds and pain relievers for nearly 6 months, no small task. RA has been progressing and have had trouble walking and my fingers for most of the day have felt like they are broken.
 
I am now in a position to address my RA, my ID Dr and RD suggested enbrel as it bypasses the gut. Great, I was so excited but my TB test was positive. Latent TB from all my travels, So I am on 9 months of INH which is the last thing I wanted to do after all the a/b's I've had. Finished my first month of INH and had my first shot of enbrel yesterday. All the waiting, anticipation of this miracle cure and relief have turned into a fear of the next shot. I have had so many shots and blood draws over the last 6 months I've lost count but that enbrel shot was a nightmare and infront of my kids too. I didn't have anyone to watch them and I thought this would be a doddle. (They are also used to their dads diabetic shots).
 
The first injector the warm one failed to inject, so the nurse got another straight from the fridge and injected me in the thigh. I could not catch my breath and almost passed out. I would not consider myself a wimp, but I sure was not prepared for that (the burning was so intense) I can't imagine that warming makes that big a difference does it?? I am staying home today because my mail order supply of enbrel arrives today, but I just can't stop worrying about this next shot and how the heck I'm gonna do it. Also waves of nausea, not sure if it's the enbrel or worry. Not so thrilled about this new treatment anymore. Anyone else have a bad first experience, and get passed it???
 
Thanks for any advice you can give,
 
JennyI haven't had experience with Enbrel but just wanted to send hugs your way!!No experience here either- just that my doctor kept suggesting I use it and I had the fear of what you actually experienced. Thankfully my RA has been responding to the MTX so well he has laid off on the biologics.
 
Good luck with future experiences- from what I've read the warming does help significantly and some people seem to feel the whole thing is a breeze...
Enbrel shouldn't be injected when cold.  Let it warm to body temp.  Also, ice the area that you inject.  I inject Humira but I ice my leg for about 15 minutes before injecting.  I've taken Enbrel and Humira both and Humira hurts more than Enbrel.  Like you, the pain of the medication took me by surprise.  I hadn't iced the area.  Now I barely feel it.  Also, some people have said that injecting the stomach is easier than the leg. 
 
I have the same thoughts about injections and doctors.  I've been to so many in the last year and had so many pokes and prods that I just don't want to do another one.  I went through that this week but then I realized that I can golf because of my injectible medication and I can hike.......so I inject myself with a smile because it's been 10 years since I could golf or hike.  Lindy
I'm really sorry to hear about the c-diff. That is one difficult bug to get rid of for good. 
And, it makes you so terribly ill.
 
I was on Enbrel for about 5 years. It was before they had the preloaded version and I had to mix it myself. After the first few shots I no longer had any burning.
 
It kept my RA in remission completely. It is well worth hanging in there to give it a good try.
 
I hope it works wonders for you like it did me.
 
Judy
 
One more thing. I found that putting it in my stomach was the least painful area.
 
I have plenty of extra there. I just squeeze an inch or two which sort of numbs the area.
 
Judy
Hi Jenny
I'm almost one year into Enbrel and while it does still sting,  it's a short 15 second pain I can live with.   I actually count it out to distract myself.   Definitely warm it up first, try ice and wait until the alcohol rub is dry.   I have heard from others that the stomache is less sting, but I haven't tried it yet.   With the thigh it's downward pressure so I can hold the pen down - I'm worried if I try the stomache and it stings my reaction would be to pull away and figure there's more chance to not get the med in.
 
Don't give up on it - if it makes a difference in your RA, it will be worth it.
Hi, I inject enbrel in my stomach every week and I have to agree with some of the above suggestions. I set the shot out for about a half hour then I hold it in my hand for a few minutes so it's my body temp, then I inject in my tummy. I use the sure click and it hardly hurts at all. I have been on it since December and feel so much better. My energy is up and my morning stiffness is pretty much gone. The first time is always scary and definitely don't stress. Just tell yourself:  this is going to make you feel better!
take care
Do you have a friend that can help you with injections?  I used to use depo-provera for birth control, and I would have to go pick it up every three months from the pharmacy.  There's no way I could do the shot myself!  The first time, I picked up the Rx from the pharmacy and went straight to the doctor's office so a nurse could give me the shot.  After that, I had one of my friends (who is an RN at the local hospital) give me the shot, usually after we drank a beer.  I'm a huge baby when it comes to needles. Please tell me with all those antibiotics they put you on probiotics?  Please?  My neice just got over c diff and is weaning from her immune suppressents now.  The docs are using antibiotics and probiotics to help it along.  It's on the American College of Gastroenterologist website.
 
Pip
Welcome to you Jenny. Warming the Enbrel to room temperature and icing the injection site are extremely helpful. Do you have the auto-inject or the syringe? When I was on Humira I had the syringe. It took me a couple of times to get used to doing it, but I had no problems one I did. When I switched to Enbrel, the doc prescribed the auto-inject. I find it more painful, but it only takes fifteen seconds and the stinging goes away pretty quickly once it's done. When I was injecting embrel I did the same as others here have described, I'd leave it out for 20 min and while I was waiting, I'd ice my stomach (a lot less painful there) I'd pinch the area, inject, let go and immediately put the ice back on for another 30 seconds. No sting at all because the area was so numb.
 
It just takes a little practice. Good luck, I know you can do it!
I was dx 4years ago, and am on a cocktail of mtx, sulfasalazine,celebrex. prednisone, still no relief, so started to inject humira 9 moths ago, I was horified that I had to self inject but I had no option, I had to do it.  I found warming to room temp. and injecting in the stomach was much easier than the leg.  Injecting into the leg knocked me sick. It got so I hated the morning I had to inject, then I got a very bad infection and had to spend 3 weeks in hospital and had to go off Humira.
 
After 6 weeks my RD decided to try me on Orencia, I was so excited again, another miracle drug, but after 2 injections still no relief. I guess if there was no hope we would give up, so please just hang in there, it has to get easier..we are strong and we are survivors. Aren't we?........
I know that self injecting makes it all feel so real.. here is my  LONG but helpful  injecting tips..
 
I was also a needle wuss.

Even though the Enbrel, and the Humira pooped out on me I am so proud that I became adept at self injecting..

It is such a non issue now. I used to faint at finger tip blood tests..Here is what works for me.

First thing give yourself time, this isn't a facial, but it is something you are doing for you. treat it like a gift. fix a cup of coffee, go someplace quiet, play calming music.

Make sure the syringe is WARM. your body is 98.6... room temp will be a shock. I rest the syringe across the top of my coffee mug. Then just before I inject I roll it between my palms.

Ice the area of your tummy you will inject. Get it REALLY cold. I have an ice pack in a light t shirt, and leave it there for a good long time. You want that area numb. Wipe your tummy with the alcohol pad and let it dry.. Completely. The sting is mostly from wet alcohol on your skin.

Pinch up a roll of flab about the size of your thumb and finger together, check the syringe, and gently push the plunger in a little to get the air out of the syringe..

Hold the syringe like you are throwing a dart, and slide the point into the skin you have pinched up. The ice will have numbed it so much you won't feel the needle slide in.

Release the flab, and shift your fingers on the needle holding it between the index and middle finger, with the thumb on the plunger.

SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."

You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.

You can do it


Just an aside to all of the tips given here:  I use alcohol wipes that have a bit of lidocaine in them.  Bought them by accident, didn't even notice.  Now, considering that I used to administer local anesthesia to my patients (dental) on a regular basis, I know that just rubbing a bit of topical lido on skin isn't going to do much at all.  It has to be an EMLA patch to really penetrate the skin.  Topical anesthetic like that works on mucous membranes (think gum tissue or eyes here).  THAT SAID, guess what, it works!  I had to self inject the methotrexate a few months before I started the Humira, and I never felt the needle going in, and while I'm very adept at giving shots, it couldn't be THAT easy.  Then I noticed the box said it had a topical anesthetic mixed with the alcohol.  So the next shot I tried without using that brand pad, just a plain alcohol wipe.  And that one stung going in.  So, go ahead and ice the spot, bring the med to room temp, and try the alcohol wipe with topical lidocaine.  I bought it at Walgreens, and it's their brand, I believe.
 
Oh, one other thing:  The autoinject pen is ruthless.  It doesn't stop for anyone.  But once it's in, it's over.  My DH saw me give myself one for the first time last week (he's usually gone in the am by the time I'm up and injecting), and I have never seen him wince like that before.  Hmmm, let's have them try it and see the compassion soar!!!  LOL
 
Keep your chin up.  None of these crazy drugs are working for me, but, heck, we can only keep trying, right!!!!
Wow, This is a really fast board!
 
Thank you so much for all of your advice. I'm not feeling so sorry for myself today as my right hand can actually make a fist
 
I'm still apprehensive about Monday but I keep telling myself it's worth it all. I depend on my kids and husband for so much, really simple things but they all add up. This is for them. I can do this.
 
I will definately be warming the auto injector and icing as much as I can bare. I'll have a nice cup of tea on hand. I will also give the alcohol wipes with lidocaine a go. Decided to go with the stomach. What I haven't decided upon is if I will get up really early so my husband can do this or if I'll just bite the bullet and give it a go.
 
It's going to be a stressful day as it is. My family are moving in on the Monday and Tuesday. I'm from Scotland, travelled internationally for many years and then finally settled here in the USA 10+ years ago. My parents are retiring here. They are building a house and have been renting. Unfortunately the owner wasn't paying the mortgage so they are being foreclosed upon 2 months before their house is due to be finished. I will also have my sister and her 3 yr old here. Her husband is going on a tour in Iraq for 9 months and she doesn't want to be alone in the UK. Her husband will join us for a couple of weeks vacation before he goes. I will have a full house to say the least. I'm trying to get the house in order and help keep the construction moving on my parents house. I'm getting there slowly, but if my hands keep improving like this I might actually be able to pull this off.
 
Lisa hope you find something that works for you soon, and thanks for the heads up re lidocaine.
 
Pip, yes I'm a big believer in probiotics. I'm kind of scared to stop them. I think I will forever continue to take culturelle, but have dropped the Florastor due to yeast issues. C diff is out there and not just in hospitals and rehab facilities. I do believe that I picked up the spores while visiting a rehab facility. I had a drive thru lunch on the way home after thoroughly cleaning my hands with alcohol as I always did. ALCOHOL DOES NOT WORK ON C DIFF
 
It's going to be a pretty desperate situation for me if I ever have to take another antibiotic again, and I'm sure that day will come, hopefully not soon though. One day at a time, just so happy to be seing improvement.
 
Thanks Again
 
Take Care
 
Jenny
 
Jenny - sweetie, a few of us here are using antibiotics to control this monster.  LOL  Personally, they saved my life.  I'm an APer (antibiotic protocol).  To our way of thinking, yes, taking those antibiotics may have helped bring this situation on, but it wouldn't have happened if your gut immunity was OK to start out with.  Strep is one bad microbe and almost impossible to kill in all 3 forms.  A round of slash and burn antibiotics will leave a cell wall deficient form behind and, to our way of thinking, that's what's making us sick.
 
Correct me if I'm wrong, but a quick look on the Internet shows Culturelle as having only one strain in it?  Florastor is supposed to be good, but if it doesn't work for your body, then it's not the correct mix for you.  My concern is the yeast breakthru - by the time we 'show' yeast we're systemic.  Have you thought about adding in different strains WITH the culturelle?  I'm having a tough time killing off my systemic yeast.  That stuff doesn't want to go.
 
Hugs,
 
Pip
 
Hi Pip,
 
Sorry, I should clarify. Antibiotics are almost a swear word in our house, but through no fault of their own. C diff is/was the main culprit but a combo of suppressed immune system and then the trigger ceftin for strep. The strep cleared up just fine but the antibiotics wiped out my good flora and the c diff which I may have come in to contact with a couple of months before started to have room to grow. I had to go on several rounds of antibiotics to get rid of / put this infection in remission. A total of 5 1/2 months of heavy a/b's. Eventually changed from a GI to an ID Dr and  I ended up on vancomyacin 500mg 4 x daily for a month. He has seen many on methotrexate with c diff. I needed the florastor to take up the space where the c diff might have grown so to speak. The antibiotics don't kill off the yeast but they do most other probiotics. Now that I hope all that is past I'm happy with the minimum culturelle, least offensive to my now tender digestive system.
 
Antibiotics have their place, and yes they are a life saver. They got rid of my c diff and as much as I was scared to I had to start an antibiotic protocol for Latent TB. The INH should not affect my gut flora unlike cephalosporins. I had a BCG as a child in the UK so I kind of knew I would test positive, so I had an Interferon Gold Test done and tested 3 x more than the minimal international positive criteria. So yep definately have TB there.
 
I'm not familiar with the kinds of antibiotics used to treat RA. I believe most mess with your flora. What kind of probiotics do you take? My yeast infection wasn't that bed, used lots of yoghurt. Not perfect but I think it's also due to antibiotics (my discomfort
 
Take Care
 
Jenny
[QUOTE=kathy_in_wlsv]
 
SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."

You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.

You can do it [/QUOTE]
 
 
I just LOVE your chant!!!
Hello,
 
Welcome to the board!
 

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