Feeling overwhelmed--mini breakdown

[lmstepha]

Yikes, was last night a mess. All of my anxiety about my P spreading lately (the new spots are my toenails, fingertips and forearms), all of the fear because the pain in my spine is starting to bleed through the Celebrex, the concern about changing to Relafen which does not seem to be doing anything, and the anxiety as I wait for my first shipment of Enbrel all came to a head last night and I had a mini breakdown. I am scared to start taking Enbrel and I am scared to not start taking Enbrel. My first shipment was suppose to come in last Thursday. Last night I got a card in the mail from UPS because they had the wrong address. Pharmacare wrote my address down wrong and my Enbrel has been sitting at UPS for seven days. Those seven days were such a long wait for me. After more than 2 hours on the phone last night, I spoke to two different UPS locations (that could not tell me anything), my doctor's office (where I had to leave a message), Pharmacare pharmacy (who could not find me anywhere in their database), and 888-go-Enbrel (who told me that all of their nurses were trapped in an ice storm and could not get to a phone). Besides all the frustration and anxiety buid-up, the 888-go-Enbrel lady gave me very different information than my doctor. I feel so uneducated about the process. My doc just said that he wanted to put me on Enbrel. He said they would be pre-filled syringes that I would have to administer twice a week. He said after checking insurance, the first shipment would arrive and then I should schedule a time to meet with his nurse for instruction. The 888-go-Enbrel lady said she could not believe that he had not given me a video. She also said that it would be a 14-step process not pre-filled syringes (unless I went with the 50mg but I have read the postings here talking about them not being the best). I am confused and feeling unsupported. Thank goodness for you folks. I sat down last night and just sobbed uncontrollably. Even at work now as I type I get tears in my eyes thinking about anything to do with PA, Enbrel or doctors. All this stress over a medicine that I am not even sure I should be taking. The main reason I am taking the Enbrel leap is because I am only 28 and have not had any children yet. Somebody say something uplifting please! I know it is not always this bad but I feel so downrigh yucky right now.

[grannyfranny]

Hi Lisa,
I'm sorry that things got so messed up for you. Sometimes we have to have a good cry and then things seem better. It's OK to cry and pitch a fit!!!!!!

With the Enbrel---I did not get a video, but this was last year. The pre-filled syringes come in the 50 mg. The 25mg, you have to do yourself. It is not hard to do. A nurse will go over it with you and give you your first shot. If you live close to your doctor's office, they would probably do it for you. You will get a very detailed booklet to show you step by step exactly what to do.
It is not hard-it's just the first one that seems so if you have never done this before. If this is the med. that helps you--you will start looking forward to giving yourself the injection.

This delay is not worth getting so upset. Try to learn that things like this just happen. It is not your fault and you have no control over it. It will get straightened out. So just be cool and try not to think about it. No need to let the incompetence of others drive you nuts!
Hang in there

[liz]

I can't help you with the Enbrel, but just wanted to give you a big (((((HUG))))!

Sometimes it all gangs up on us and we have to let it out.

I would call you dr back if you want more info. on the Enbrel. That's something I would want to be fully educated on before I started as well.

[lmstepha]

Thanks granny and Liz. To quote Granny--"I think you BOTH might be angels!"

Guess my doc was not as educated as he should be! He definitely told me twice a week and prefilled syringes. Guess I should call him so that he does not send misinformation out there!

[jayt]

Trust me, its REAL easy to feel overwhelmed and caught up in the whole process. Even though I'm fairly happy with my insurance, everytime I switch NSAIDs or start something new there's an entire authorization process to go through. This just means more waiting until any possible relief.

I'm really sorry to hear about your Enbrel shipment getting messed up. That's terrible. Hopefully that will all get worked out, and you can start your treatment ASAP. It almost sounds to me like the lady at 888-Enbrel was making more of an issue out of it than it really is. Sure, I guess if you broke down every little part of the process it might be 14 steps. They probably consider taking the cap off the needle a whole step. Now that I've done it a few times, it literally takes me about 5 minutes to do both shots. With the new 50 mg premixed syringes, this will be down to probably a minute or so. So its really not that bad.

As for a video, I got one with an instruction booklet when I signed up for Enliven services. Nothing was mentioned by my rheumy or derm, however, when I went in for training the nurse was extremely helpful. She walked me through the process and made it seem really easy. When you go in for instructions, that will be the best time for you to ask all the questions you want. Maybe even bring a list with you if it would help. Good luck with everything. Give it a little longer and I'm sure it will work out.

[lmstepha]

Well there is good news. I already know one step. Thanks JayT! I am more than sure I will be able to take a cap off! LOL I have another idea, how about every week a different person from these boards comes to my house and gives me the shot? It may be hard to lure you Jayt because you probably have even better weather than I. It will be 75 degrees and sunny all week here in Raleigh, NC. Maybe some of the snow friends should take a trip to NC to administer the shot!

Does that mean that some folks are going to move to the once a week 50mg? I think everything I have seen on these boards about the new Enbrel has been bad!

[liz]

Lisa, we're all in this together and we're here to support each other. I have many a days where I broke down, and I came here for support. The people here are wonderful, and they understand because they are going through the same thing.

We have our good times and our bad, and we just hope that the good times outweigh the bad ones.

More (((((HUGS)))) my dear!

[jayt]

It may be hard to lure you Jayt because you probably have even better weather than I. It will be 75 degrees and sunny all week here in Raleigh, NC.

That's true. Its almost 80 today and that will continue all week. That probably sounds great to a lot of folks, but its almost too hot this time of year. Even us native Floridians need a little bit of cold weather every now and then!


Does that mean that some folks are going to move to the once a week 50mg? I think everything I have seen on these boards about the new Enbrel has been bad!

I wasn't really given a choice by my rheumy. When I went last week he just went ahead and wrote the script for the 50mg. Same thing happened with my dad. I'm going to give it a try myself, and then go from there. I still have a month of the old 25mg shots left before then.

[lmstepha]

Please keep me posted on what you think of the new Enbrel. I am so confused now that I am not even sure which Enbrel my doctor sent me!

[nla]

Lisa, we have ALL had melt-downs. You're in good company! Once you get the insurance hassles all straightened out you will be fine. I do the 25 mg. shots that you have to mix 2 X a week. At first I was totally paranoid, but it's a breeze!

My rheumy did give me a whole "kit" from Enliven last year when I started. It included a video, etc. Here's a little "tip" for you: go to the website for Enbrel. Right there you can play the same instructional video on your home computer!!! It looks more complicated than it actually is! The worst, for me, was the first time I did my shot alone at home. After that it's nothing at all!

Take a breath, girl! Weather and UPS are out of your control anyway ;) Good luck and please let us know how you make out with your shots. I promise you will soon be an old "pro" with them! I'll keep my fingers crossed that Enbrel is your miracle!

Nancy

[lmstepha]

Okay, I got the "bad medicine" yesterday. I say the "bad medicine" because it has to be returned. This is the Enbrel that sat at UPS for a week. I will get the new shipment today. I was glad to have gotten the old stuff just to satisfy my curiousity. My box of goodies did present a couple of questions that I need to ask to this group. I assumed that I was going to be doing 25 mg twice a week to help my PA. Instead he prescribed the 50 mg pre-filled syringes (which means I can not read anything else bad about them because I am scared enough--good stories please!) twice a week. It looks like he is using this dosage to treat my P. Although I hate my P, I am much more worried about my PA. Should I ask if for the lighter dosage? Any of you out there who have P and PA using the 50mg twice a week? I have read that Enbrel is more likely to have reactions at that doage. Can some of you wonderful peole give me some personal stories and experinces that might help?

[mupitz]

Lisa ~ Hi. I started taking Enbrel, 2 shots of 25 mg twice a week (totalling four needles that I had to assemble and mix myself) for treatment of P and PA in July of 2004. I was terrified at first, really terrified. I was so sure I was going to screw it up or hurt myself. My doc sat with me and showed me how to do the first shot and then watched as I did the second myself. I got a kit from the doctor when I went in with the Enbrel for my first dose/training session. They didn't see the sense in giving it to me before I got the meds. It included a booklet, a video I never bothered watching cause I had the lesson from the doc, a sharps container, and a placemat. I ordered a free welcome kit directly from Eliven that included a travel bag with freezer inserts and a large sharps box.

My PA has responded better to the Enbrel than the P on the increased dosage and I've had little to no negative side effects. My husband helps me with the upper arm shots, I find those difficult to do myself, and I've had others, like friends do them also. Legs and belly I do myself. Since you've got to mix and prep 4 needles a week, it becomes routine in NO TIME. Honest.

Just before I lost my insurance I was scrip was changed to the 50 mg prefilled syringes. So I haven't gotten the opportunity to try them out. But I researched them. Apparently, they have to be room temp for a comfortable injection. Some people warm them in their armpits for a couple of minutes or let them sit out for a half hour or so.

I suggest starting with the higher dosage. If side effects are bothersome, they can lower it. I'm confused though what did you actually get the 25s or the 50s?

[lmstepha]

I got the 50s Becky. While I am less intimidated by the pre-filled syringes, I know many here have had trouble with them. Thanks for sharing your experinces with me. It helps. Sorry to be so afraid. I know many of you with insurance problems wish you had my problems.

[JodyGK]

Hi Lisa Marie -- please don't be sorry that you're scared. It's a valid feeling, and those of us already on Enbrel completely relate to the fear you're feeling. I know before I started Enbrel I was very nervous about it. I worried about so many things, not the least being I am a complete needlephobe. I've actually been known to faint while giving blood or getting an injection at the doctor's office. I was sure I'd never get up the nerve to inject myself.

Well, here I sit a year and a half later, and I'm an old pro at injecting myself. It really is easier than I thought it would be. It really doesn't hurt when I angle the needle well. And I'm one of the lucky folks who have never had a site reaction or any other side effects, except some tiredness on the day of injection for the first month or so. But that passed too.

I haven't tried the 50 mg yet, but my next shipment (due tomorrow) is going to be the 50 mg. I've read all the feedback on the boards about it, and will follow the advice I've seen so far: let the syringe sit out for at least 15 min to 1/2 hour to get rid of the chill (alleviates stinging of the solution), have ice ready to ice my skin before injecting (alleviates pain from new needles). I'll be trying the new needle without the ice to see what the difference is the first time.

Again, no apologies please for expressing your very real emotions. We're with you. Some of us have been there and know how intimidating the whole thing can feel. Let us know how it goes.

Jody

[lmstepha]

Thanks Jody. Please please please let me know the results of your experiments with the 50s. I should receive them today but I need to schedule my first lesson so I ma not sure when I will actually start. I need to go back and look at those threads with the tips. Where is linkmaster MikeK when you need him?

[sdavies]

Just had to type a reply Lisa Marie. So sorry your having such a bad time, hang in there - the darkest hour is always just before dawn!
Love and best wishes from across the waters in Wales.

Stacey

[vshorter]

Hi Lisa Marie,

I've been on the 50 mg 2x's a week for 4 months now and been using the new pre-filled syringes for the past month. It has really helped my PA and cleared what little P I had.

A couple of tips:
1-Call Enliven Services and enroll so you get a welcome kit and also request a travel cooler. That will also get you a large sharp's container for your used syringes. It took a few weeks to get mine. (If your doctor doesn't give you a kit with a small sharp's container (he should) you can use a rinsed out laundry detergent bottle for your used syringes until you get a sharp's container.)
2- Pick up some alcohol wipes at the drug store as these no longer come with the Enbrel like they used to and maybe some cotton balls and a small ice pack to use before/after injecting.

With the pre-filled syringes - I leave them sit out for 45-60 min. before injecting. 15-30 min. was not enough as I still had some stinging.

Also important is to make sure the skin area wiped with alcohol is dry before sticking the needle in or it could sting.

As far as the needle being dull - there is a pointy side to the needle if you hold it up and look at it. I make sure that the sharp point side is down so that it is the side to pierce the skin and angle in. This seems to help some.

When you inject - important to go in at 45 degree angle and pull out at same angle - try not to move it around at all. Also, don't press down hard or rub the injection site after removing the needle - just hold a cotton ball lightly on spot if there is any bleeding until it stops.

I also found it helps to make sure that there is no medicine on the tip of the needle when I inject - I just shake the syringe or flick the barrel with my finger to knock the droplets off the tip. It's important not to touch the tip of the needle to anything after uncapping it to prevent contamination.

Personally, I don't ice before or after injections, but a lot of people have said that it helps prevent bruising and can also help with the problem of the dull needle. To me, the needles aren't that big of a problem by following what I have listed above and I very rarely get any bruising unless I move the needle or go in at the wrong angle (less or more than 45 degrees).

Didn't mean for this to be so long, but I hope some of it helps. :) I like not having to mix the Enbrel. Sure, the needles aren't quite as sharp as the old ones - but hey - once you get used to it, it's only a couple minutes twice a week - and I fiqure compared to the pain of PA... :eek: it's a piece of cake! :cool:

Best of Luck-
Vicki