Starting Enbrel

[Had-It-Forever]

Hello fellow posters! A few weeks ago I posted a few comments on PA and fingernail P. I was diagnosed with P at age 12. Diagnosed with PA at age 20. Diagnosed with lymphoma at age 30. I have been on a host of meds, ointments and creams including MTX for about 12 years now. In the last few weeks my PA and fingernail P has flared beyond belief. I can't do ANYTHING without it involving pain. It got to the point that I am having trouble doing my job (I'm a secretary). I spoke with my Rhuem last week. We had spoke a few times about putting me on Enbrel. I was always afraid to because of the lymphoma. I have been in remission from the lymphoma for about 4 years now. My doc and I finally decided together that I would start the Enbrel. My life is just suffering too much and I need the relief. I believe that I will be starting it in a few weeks. Can anyone out there go through how it works from a patient's stand point? I know what the Doc says, but I wanted to know what a an actual patient thought. I know it is injectable. How often? I now there are side effects. What has anyone here gone through. I know it will probably be worth it. I just wanted some feed back from one of us. Not a doctor. Thanks so much. This website has changed my total outlook on this hellish disease.

[alli]

Hey, Haditforever,
I've been on enbrel for over three years now for severe plaque P ( recently diagnosed with mild PA, though I think I had joint issues for years before heading to a rheumy).
You already know that enbrel is an injectable. There are currently three different methods of mixing/injecting:
1) the old fashioned method of mixing the drug yourself ( time consuming, but the size of the needles is smaller)
2) the pre-filled syringe ( saves times, needle a tad bigger)
3) the sure click method ( saves time and you never see the needle, however, some have reported problems with this method).
I have used the first 2 methods in the list and prefer the pre-filled ( #2). I know there are some on the boards that still use the mix-you-own and are very happy and others who prefer the sure-click style.
The doctors office will teach you how to inject- trust me, it becomes NO BIG DEAL after a couple of times. I'm beginning to think it's a perfect way for any person with severe P to get over their fear of needles!! My annual flu shot hurts more :eek:
I have not had any side effects to date other than some injection site reactions in the first few weeks of using the drug. I also have not had any 'more' problems with catching colds or viruses ( though I should mention that I jump about four feet away from anyone who sneezes or coughs near me). I get my flu shot and TB test annually and get blood done regularly.
Since you're starting the enbrel for both skin and joint issues, I'm assuming that they're going to start you on the 'double dose' of enbrel for the first three months. This is 100mgs ( or 2 shots a week) to kick start the drugs action. From what I've read on these boards, most people get relief from their PA very quickly during the first few weeks of enbrel use. The skin can be slower to react---this is where that darn P varies from individual to individual. I've read here that some have seen skin improvement within a couple of doses. It took me forever ( LOL :D , now seems forever), 9-10 weeks to see my skin clear. Once the clearing started, wham, it cleared in a matter of 2-3 weeks.
For me, enbrel has been a great drug. Just last night I "shot up" ( my derm and rheumy both HATE that expression :rolleyes: ), and thought, ummmm, that was my entire treatment for the week----took about 30 seconds. I do constantly live with the knowledge that enbrel may stop working for me, or that I might have to stop biologics for another reason, until that time, I'm enjoying some freedom from my P/PA.
If you have any questions, feel free to PM me.

[easydoesit]

Alli do you stop taking the Enbrel when you get your flu shot? Or is that not an issue? I'm starting Enbrel soon myself and was curious about that.

[alli]

Easydoesit,
I do not stop the enbrel prior to getting the flu shot. However, this is just MY doctor's orders. I heard a derm speak in Orlando who did say that he required his patients on enbrel to quit the drug for 2 weeks before getting the shot.
I think it's a matter of which protocal the doctor follows.
I recently switched my prescription of enbrel from my derm to my rheumy. The rheumy requires that I get a TB test every year and was shocked that the previous 2 derms hadn't done this!! I've also heard some derms/rheumy's requiring chest x-rays before they write a scrip for the biologics.
It all depends on your doctor.

[easydoesit]

Easydoesit,
I do not stop the enbrel prior to getting the flu shot. However, this is just MY doctor's orders. I heard a derm speak in Orlando who did say that he required his patients on enbrel to quit the drug for 2 weeks before getting the shot.
I think it's a matter of which protocal the doctor follows.
I recently switched my prescription of enbrel from my derm to my rheumy. The rheumy requires that I get a TB test every year and was shocked that the previous 2 derms hadn't done this!! I've also heard some derms/rheumy's requiring chest x-rays before they write a scrip for the biologics.
It all depends on your doctor.

Thanks for the info, I'll be sure to ask before having the flu shot.

I had to have the TB test and chest x-rays prior to my rheum writing the prescription. Actually I was tested for just about everything under the sun including hepatitis, HIV, etc etc!

[Had-It-Forever]

Hey, Haditforever,
I've been on enbrel for over three years now for severe plaque P ( recently diagnosed with mild PA, though I think I had joint issues for years before heading to a rheumy).
You already know that enbrel is an injectable. There are currently three different methods of mixing/injecting:
1) the old fashioned method of mixing the drug yourself ( time consuming, but the size of the needles is smaller)
2) the pre-filled syringe ( saves times, needle a tad bigger)
3) the sure click method ( saves time and you never see the needle, however, some have reported problems with this method).
I have used the first 2 methods in the list and prefer the pre-filled ( #2). I know there are some on the boards that still use the mix-you-own and are very happy and others who prefer the sure-click style.
The doctors office will teach you how to inject- trust me, it becomes NO BIG DEAL after a couple of times. I'm beginning to think it's a perfect way for any person with severe P to get over their fear of needles!! My annual flu shot hurts more :eek:
I have not had any side effects to date other than some injection site reactions in the first few weeks of using the drug. I also have not had any 'more' problems with catching colds or viruses ( though I should mention that I jump about four feet away from anyone who sneezes or coughs near me). I get my flu shot and TB test annually and get blood done regularly.
Since you're starting the enbrel for both skin and joint issues, I'm assuming that they're going to start you on the 'double dose' of enbrel for the first three months. This is 100mgs ( or 2 shots a week) to kick start the drugs action. From what I've read on these boards, most people get relief from their PA very quickly during the first few weeks of enbrel use. The skin can be slower to react---this is where that darn P varies from individual to individual. I've read here that some have seen skin improvement within a couple of doses. It took me forever ( LOL :D , now seems forever), 9-10 weeks to see my skin clear. Once the clearing started, wham, it cleared in a matter of 2-3 weeks.
For me, enbrel has been a great drug. Just last night I "shot up" ( my derm and rheumy both HATE that expression :rolleyes: ), and thought, ummmm, that was my entire treatment for the week----took about 30 seconds. I do constantly live with the knowledge that enbrel may stop working for me, or that I might have to stop biologics for another reason, until that time, I'm enjoying some freedom from my P/PA.
If you have any questions, feel free to PM me.

Thank you so much for all of the info, it was very helpful. I'm not afraid of needles and probably won't have a problem with them. When I had lymphoma I went through plenty of needles with the chemo.

Did you happen to have any fingernail P? I was wondering if the Enbrel would help with that? It seems to be the worst problem for me. Most of my PA pain is in my fingers, hands, wrists and knees. The fingernails are the worst. I have been doing the 777oil for my P along with fish oil, flaxseed oil and some vitamen D. But PA is my down fall.

I am currently on MTX, which seems to not be working for me anymore. It's been 12 years since I started it. Do think my doctor will take me off of it when I start the Enbrel? Did your doc take you off any of the meds you were on before Enbrel? He did say I would have to take a battery of tests before I start. I have been getting bloodwork every 3 months because of the MTX.

I was also curious about the financial issue. My insurance will cover it, but of course I will have a co-pay. Can I ask what you pay? I'll understand if you don't want to answer. Whatever the cost, I will pay it if it helps me be normal. Normal to me is being able to wake up with no pain.

I try to make the best of everyday that I am alive. But it's been hard lately. The pain is just to the point of being unbearable. This site is a Godsend and makes me feel a bit better when I come on and read that others understand the frustration of this predictament we are all in. Again, thank you so much for your information and taking the time to share it with me. Enjoy your day.

[alli]

Had-it-forever,
I actually began enbrel on a clinical study and had to stop using all prescription meds prior to the first injection. My study was to prove that double doses of enbrel were necessary in the first three months of use to 'kick start' the process of the skin clearing ( therefore making the insurance companies pay for the 'double dose' during the first 12 weeks).
Many people on these boards report using a combination of drugs along with the enbrel ( whether it be MTX or an added topical). In a recent conversation with my rheumy, he noted that most of the recent studies show that a biologic combined with MTX seems to be the golden bullet for a lot of patients. I am currently only using enbrel, but always want to be aware of what plan B or plan C would be if needed. I guess it will be up to you and your doctor about which meds he wants you to continue or discontinue.

I never had finger nail P, but have heard from others that it's extremely painful!! Maybe someone who has suffered from that and has used enbrel can come along and answer those questions for you.

As for the co-pay, this varies according to your prescription coverage. There's a discussion about that here:http://www.psoriasis.org/forum/showthread.php?t=19919&highlight=enbrel+co-pays

I've heard of co-pays as little as $8.00 a month. I'm jealous. I pay $100.00 a month, but for me the cost is worth it. I am currently looking into getting the enbrel delivered through a mail pharm in hopes that I can get a three month supply for the cost of two months.

Best of Luck

[Had-It-Forever]

Alli,
Thank you so much for all of your useful information. I really appreciate it. Take care.

[theskinyouarein]

Hello & welcome to the boards. I also like the "patient" perspective, I feel like it's as close as you can get to having your finger on the pulse, so to speak. Practical experience is a real strength of these boards! My son started enbrel 7 weeks ago. It's been an instant relief for his PA and is slowly improving his severe P. I can't wait to see what happens over the next month or two! As far as side effects, the only one I (may) see is occasional stomach aches. He's had a problem with ?gastritis/ulcers in the past, so I am putting a call in to the derm to see if we should restart his pepcid complete. Other than this poss s/e, things have gone very smoothly. We use the multi-vial mix your own dosing, and it works fine for us. It's a bit time consuming at first, but then you seem to perfect the steps and it's pretty quick now. We use a lidocaine cream for the site before hand, so waiting the 20 or so minutes is what takes the longest!

My son use to take MTX and there are TWO things I don't miss #1) the exhaustion that my son felt and #2) the monthly lab work.

As far as I know, I MUCH prefer Enbrel, but it SURE took alot of soul searching before taking this step. My son is just 8 yo, son you can understand the amount of questions we had...and in some cases, still have...

Good luck, hope it works as well for you as it has for us!

[Had-It-Forever]

the skin youarein:

Thank you for your thoughts on Enbrel. I hope your son keeps doing well. I didn't get the PA until I was about 19 or 20 years old. Had the P since I was a kid. God love him for being able to go through this. Many days I just can't seem to take it anymore. (the pain and exhaustion) I should be starting the Enbrel in a few weeks or so. I have a bunch of things to take care of before I start. Thanks again.

[ouchyk]

Had-it-forever,

Good luck on Enbrel for many it's been a godsend.

Wishing you wellness..

Karen

[Had-It-Forever]

Had-it-forever,

Good luck on Enbrel for many it's been a godsend.

Wishing you wellness..

Karen

Thank you Karen, I appreciate all the info and well wishes I get from the wonderful people on this site. This site has given me new hope for something that seems so hopeless. Who would have ever thought that strangers could care so much about each other!

Take care...Lisa

[PsoriasisGirl]

Hi!

I've been on Enbrel for a year, then went off it to Raptive and Cyclo, and am now back on it. You can read my blog to see how I'm doing with my Enbrel/UVB treatments.

Enbrel truly changed my life the first time I was on it. At that time I just had Psoriasis over most of my body. When I went off Raptiva and Cyclo, we found out that I also had PA. After 1 shot of enbrel, my PA already started feeling better. After 3 weeks, I noticed a definite improvement in my skin and so far it's been about 6 weeks and my skin is getting better every day.

I have psoriasis on my:
scalp
neck
nails - got lovely pits!
hands (both sides)
arms
legs
trunk
genetalia
...maybe I should have made a list of where I DON'T have psoriasis, might have been easier.

When I went off Raptiva, we found that I had PA in all of my bone joints from my waste up. Heck, even my butt bone was hurting.

Anyway, I truly hope that this works for you. For the first time in about 10 years, I was able to wear short sleeves and I was so happy that before my latest outbreak (2 months ago), I was able to get into the pool with my kids (I had to wear swim pants, but my top was clear to where I could just wear a swim suit!). That meant the world to me.

To answer some of your questions:

-I am on 2 shots a week. I Take a shot on Tuesday and then on Thursday. I'm on the pre-filled 50mg needles

-It's already cleared up my hands and my head. Enbrel works from the top down, so you should first start seeing results in your scalp and from there on down.

-My nails completely cleared up after the pitting "grew out".

-I had PA in my fingers, hands, wrists etc, Enbrel got me relief fast (bear in mind though, I haven't had or been diagnosed with PA as long as most of the people on this board, so your recovery time might be longer)

-Your doctor might wean you off MTX. My doctor made sure that I was on Enbrel before we weaned off cyclo. I just prefer being on one medicine at a time.

-I can't remember getting bloodwork specifically for Enbrel, but I know that my doctor didn't administer follow up bloodwork tests for Enbrel after I started it.

-I'm currently paying $60 a month for my Enbrel, but I have been fortunate to have great insurance. Enbrel is also something that you can't get from your local drug store, you have to order it from a pharmacy that ships it to you. When I do this, I order a 3 month supply at once, so I only have to call them every 3 months to get a refill. It needs to be refrigerated, so make sure you have room in your refrig and make sure it DOESN'T FREEZE!

I know the pain is unbearable. I remember 6 weeks ago, not being able to get out of bed at all for 5 days straight. Between the pain and depression, I honestly don't know how we all do it. Right now the only physical pain i'm in is some tendonitus on my right left and a jaw joint problem...plus the itching and scratching (if you see my photos, you'll see how bad I truly was).

Last night was just a bad night, between the itching, feeling bad for myself and just depression, I didn't get much sleep. I think the hardest toll that Psoriasis and PA has taken on my body has been emotional. I just don't know how to get out of it. Plus on top of that, i go into surgery next week to get a lump removed from my breast...

Anyway, I digress...let me know if you have any questions, I will be sending happy thoughts your way!

[Had-It-Forever]

srpoteat:

Thank you for your post also. I appreciate everyone being so honest and open with things that are so personal. It is so hard to be positive about everything in life when you have this. I just take it day by day. One day I am crying in pain and the next I am laughing and joking around (thanks to the support of my husband). We need good emotional support around us. Good luck with your surgery, and best wishes from me to you.

Lisa

[alli]

Srpoteat,
You mentioned in your last post that enbrel wasn't something you could get from your local drugstore, this might be something that your insurance company requires.
I actually picked my enbrel up from my local Walgreens for years, until about 2 months when I received a letter from my insurance company requiring that I obtain the enbrel through a mail pharm.
The only problem I ever encountered with obtaining the drug through my local pharm was that since it's an expensive drug, I had to make sure to order it in advance to make sure it was in the store when I needed my refill.
I've only used the mail order system once ( well, next Wednesday will be my second time) and quite like it!!

[ouchyk]

I also pick up my humira from a local pharmacy, and before that enbrel this has been the case for the past 4 years ( almost )...I had the option of using mail order but decided not to use it. I like having all my meds at one place so they can look for interactions etc ( none with humira/enbrel that I am aware of )...I've been at the same pharmacy for over 20 years now..

Lisa,

Sometimes you have to take it day by day, hour by hour or minute by minute it will get better... thank goodness for supportive families and friends! It's no picnic being in pain and can be overwhelming at times.

Spoteat, glad to hear that your better, I will have to go check out your website again!

Hang in there,
Karen

[easydoesit]

Lisa I am starting Enbrel soon too and I cannot wait to begin as the past several days I have had probably the worst flare and pain to date. It's not as bad today thankfully, but for a few days I could not pick up a glass to drink from with my right hand, and my back was so painful that sneezing was excruciating.

I have to wait until after I have some dental work done over the next couple weeks before I can start, but I should be on the Enbrel by the second week of September. My fingers are crossed that it will at least tone my PA down. In the mean time Aleve is helping a bit to take the edge off the pain.

[marinersarenumber1]

Haven't been on the boards for awhile, but read your threads, and decided to reply. Maybe this has already been posted, but aside from your insurance carrier (I have Regence BCBS), you might qualify for Enbrel's QuickAssist program. My insurance pays for the bulk of the medication, and QuickAssist takes care of the rest. I believe QuickAssist will compensate up to $360.00 per month (approximate allocation), with additional financial support for up to 2 years. You might want to contact them: 877-777-8718. Bottom line, I don't pay anything for my medication! Even better yet, on 50mg a week for only 6 weeks, I've had very good results. I use the autoinjection method, and it's a no-brainer (I'm used to needles from my cortisone days). My feet still hurt sometimes, but the neck, chest, and knee pain is all but gone. I also stopped taking tylenol and aleve, which was really hard to do psychologically. My PA is under control, my P is getting better but still have trouble spots. Don't we all? I hope this info was helpful, and I hope that one day we have a cure. Later!

[PsoriasisGirl]

I did not know you could get Enbrel from Walgreens! That store really DOES carry everything :) I was told that I had to go through a mail order and for some stupid reason, I had to be "denied" a prescription from my local eckerd before it qualified for this mail order place to send it to me, so we took the prescription over to Eckerd, they said "What the heck is this? We don't carry it but if we did, it would cost you $1500 a month" and denied it. I guess it is the way that my insurance does it (BSBCNC). I'm not complaining, I'm lazy...I like it shipped to me so I don't have to run out to get it :)

I think everyone needs a "at least you're not like" friend. You all know what I"m talking about...it's the person you unwittingly compare yourself to when you're feeling down to make you feel better...whether it's "Well, at least our kids aren't like Joe Blow's kids"...or "well, at least I didn't marry Joe Blow's wife" or whatever...

I would be more than happy to be your "at least you're not like" friend. Lisa, anytime you're feeling down, go check out my pictures on the blog, the very first pictures which showed my major flare up. Then you can say "Yeah, well at least I'm not like srpoteat".... :) If your flare up is just as bad as mine is, then feel free to look at the picture of my overhanging belly and say "Well, at least my belly doesn't look like that!". It will make you feel better :)

In all seriousness, this disease sucks, but we just can't let it bring us down. We can't let it win! I will survive! (Great, now I have that song in my head!!!). I've spent many nights huddled in a ball at 3am just wishing for the itching to go away, and it just sucks. It REALLY sucks. It sucks I can't do "NORMAL" activities like wear t-shirts, go to the pool, hang out at the beach...but I'm not going to let it beat me. Ok, i'm done now :) Good luck with Enbrel!

[bellaloz]

I'm so depressed. I've been on Enbrel for 10 weeks and my psoriasis is worse. I stopped the UV, which worked amazingly well this summer when i cleared up from being at the beach. So i stopped UV treatments last week to see if enbrel was working. Well last night i noticed what a wreck my legs look and today the plaques are bright red.
I'm t hinking i'll go back and do the UV tonight after work just because enbrel is obviously not liking me the way it likes other folks.

Has anyone found that after 10 weeks it amazingly kicks in and starts working, or am i just kidding myself now? Will it just not work for me? Your thoughts would be so appreciated.

Lori

[RichJ]

hi lori,
sorry i can't help much but welcome to the p family. you will meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. maybe some one will come through and help with your ?

have a good night all

richard

[pgerpup]

Hi Lori,

I don't know the answer to your question either. I can tell you my experience is that Enbrel doesn't make a huge difference in my P, but it helps my PA significantly. I'm still stiff when I stand up to walk, but not nearly as bad as without it. So, for now I'm sticking with it. I was on it for 9 weeks the first time and I've been on it 4 weeks so far this time. I had to take a break to let an abscessed tooth heal. Some people have told me it takes a full three months to kick in. So, hang in there, maybe your immune system is stronger than you think! :)

Good luck,
Fay

[bellaloz]

Thanks for the kind replies so far. And the warm welcome!
Fay, when you say people have told you it takes three months, where did you hear that? And what do you mean about my immune system? Does that mean if my immune system is strong it takes longer for enbrel to work?
I'm so confused and would really love any advice someone might have about how long it takes to kick in.
Thanks! i'm wondering if i'm making it worse before it gets better!

Lori

[ouchyk]

Lori,

I have a good friend who was in clinicals for Enbrel which she remains on today, she's 100% clear I think it took her 12 weeks to get to that point.

I will ask her to either respond to you here tomorrow or send you a PM ( Private message ) as she's super busy.

Hang in there!
Karen

[alli]

Hey Bellaloz,
I think I heard Karen ( Ouchyk ) calling my name :rolleyes:
I noticed that you posted on the PA forum, are you using the enbrel for the psoriasis only, or PA as well? Another question for you, what dosage are you currently on?
The reason I asked these questions is that it's been proven that for the psoriasis a patient usually needs to start on a 'double dose' ( 100 mg a week ) of enbrel for the first three months. While some people see clearing in as little as 2 months, I think the majority see real progress at three months. My personal experience was clearing at around the 9th or 10th week.
You might want to check out the enbrel (www.enbrel.com) website for more information!!
Hope you start to see improvement soon!!

[kestrel2008]

I'm basically a PA person with very little P actually but still it took close about three months for it to really kick on me too. I think people react differently as some people report feeling different in a couple of days and others much longer. Even now after 4 1/2 years on it, it takes a good 2 weeks for things to even out when I get one of those pharmacy hiccups. Give it three months but not much more than that.. maybe you need to try one of the other options.

[alison149]

hi, just started embrel today. I was so nervous about giving my first shot. but it didnt hurt at all. I did it in the stomach . I have a lot of fat there . even when injecting in the liquid it didnt hurt. I had weeks of worrying for nothing. now i just hope it works.