First dose of Enbrel. What should I expect?

General
21

Hi beecreek, I agree you need to tell your doctor about your skin infections before making a decision. There’s also a lot of research you can look at, and you’ll find the most recent stuff is consistent with what Lamb says.

But I’ll tell you my experience. I was taking MTX and low to moderate Prednisone (10-12 mg) for about 8 months, just keeping the disease on a low simmer. Kept getting sick - colds, flus, that wouldnt go away, bronchitis. Needed something better to function, continue to work, and most importantly play with my toddler :slight_smile:

I started Enbrel, stopped MTX, and tapered down to 4mg pred. My PsA was suddenly so much better ( I am a lucky quick responder), and I suddenly stopped getting sick all the time.

Then I had a work trip to Burkina Faso (West Africa). Not quite the wet socks lamb refers to, but certainly not a developed country! We decided to halt the Enbrel while I went over in case of increased infection risk. I felt lousy, even though I upped my pred significantly to deal with it. Well 3 tummy bugs and one skin infection later, I was so glad to get back to Australia, off that pred and back to my Enbrel.

Fast forward 3 months… I’ve not had a single infection or significant cold or flu since.

Tonight I’m sitting in a remote field camp in Burkina Faso, somewhere near the border with Togo. This time I brought my Enbrel with me, and despite 42 hours in planes and airports, and developing country conditions, I’ve not even had a sniffle since I left home.

If those terrorists think they are going to take my Enbrel, they’ll have a fight on their hands!

(they are at least one country away - so not serious :slight_smile:

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tntlamb / Jenn: I appreciate your reply and I understand. I feel so much better about the idea of taking enbrel. I have started the enbrel enrollment process through enliven services already just in case my dr still wants me on this drug. And Im glad I did start it now. You and Jen were reassuring. I didnt know very much at all. Just from what I read in the drug info booklet by the company. My mind will be more at peace as I wait to hear back from my dr. As well I have to see if my insurance will approve me.Thats the next step. The insurance company said they'll cover me 100%.if I get approved. Ive always known that treating PsA aggressively is the best approach & you reminded me about this too at the same time you reassured me it's safe. I am sorry you both think I am a nut case. emotional I am. All this is so scary , having PsA and getting worse but so were my leg infections so I freaked out when I saw there is a greater risk of infection. You are right - apart from the drug info sheet the other studies and accounts I read from others were old. Nothing in recent yrs. Thank you for giving me your personal perspectives on this. Thank you for taking the time to reply back. Jenn stay safe!!! Keep your enbrel close to you =) I am glad you are doing well over there. By the way I hope to stay on medication if my husband and I have another baby. A little concerned about this but my dr said enbrel is safe. Ive read that it is not reccommended but women have taken it without any issue. Unlike mtx which is very dangerous. anyways I would hate for my PsA to get worse if I was to get pregnant and not take anything. My dr was reassuring when he said enbrel will probably take all your symptoms away and pregnancy will be better experience.


tntlamb said:

The warnings you are referring to are from the initial applications. there are studies done prior to approval. They generally are a fairly small population 500 - 1000 so numbers can be skewed pretty easily. There is a reason for this. The study is repeated with several populations. Once the drug is approved the "warnings etc" are pretty much cast in stone. Then after the drug is in use they monitor it in what is called aftermarket studies. The data becomes more and more "accurate" (or at least indicitve of what really happens.) If it get worse the drug is reviewed. but if it gets better, interrstingly not much changes. The after market data is not as easily found, but its out there.Most docs won't refer to it what they may do is answer a specific question, what they are most likely to do is hand you a brochure and tell you to read it and do your research. (This means they disagree with the prescribing information)

If you really want to know whats what you can access the "real stuff" if you cl;ick into the "For health Care Proffessionals" prescribing information on the drug companies websites. Its frankly a bit complicated to ferret through.

You asked why it isn't as strong for MTX? thats because the have NEVER been any approval studies for MTX like the initial studies for the biologics. Its operating off the fact its an approved drug being prescribed at 1/100th the dose it was approved at. The fact that most of the patients using MTX in the initial study DIED has nothing to do with it (much) It is a chemo therapy drug for colon cancer. More to the point these folks all hadall the condition (infections cancer etc) so it is hard to know if MTX caused new ones. thats a bit overstating by the approval of low dose MTX for arthritis really was based on whether or not it worked for the NEW conditions. But just like Enbrel there have been aftermarket studies:

http://rheumatology.oxfordjournals.org/content/48/8/867

Heres the thing. The chance of serious side effects aren't much higher than taking nothing with ANY of these drugs. There is a chance of some really annoying side effects for sure.

But ask any of us who have been around for a while The CERTAINTY that this disease will do some very bad things if not treated makes those chances of side effects almost not worth considering. A lot of us are old farts who in the eyses of you youngins lives are almost over anyway. But ask any of us if we have taken these drugs when we were your age in order to make our lives and the lives of our children better (had they been available) I'd be very surprised if anyone would have said no. I'm not trying to make light of your concerns/fears at all.

23

I liked the Enbrel. I preferred the pre-filled syringes over the pens since I like the control over the speed of injection. In addition, I am used to giving shots since my son has type one diabetes, so the shot stuff was not a big deal.

I'd get an itchy bump, and sometimes a bruise. Sometimes it would be a little sore, sometimes it would be fine. None of the side effects were much more than a mild distraction. If using your stomach as an injection site, pick a spot where your clothing waistline won't irritate it.

The Enbrel worked great at first for about 2 1/2 months, and then its efficacy began to dwindle. I'll be placed on Humira soon. I'm just waiting for it to arrive.

Enbrel is a miracle drug for many. Best wishes to you.

24

It is emotional and scary - the disease itself, the drugs, the concept of a life sentence (until you find a different way to look at it).

We are not nuts (though who could blame us if we were!!!), and the decisions are hard (hmm, the one with the box that says cancer, or the chemo drug that messes with your liver, among other things… Chocolate or Strawberry?) .

I’ve made a few pleas for help that were far more emotional than yours on this board, and found great support , that’s what everyone is here for :).

Do make sure you do you research and know your options - but to be honest, it sounds like you really do have some good things going for you - a Rhuemy who knows his stuff, isn’t dismissive, and wants to treat the disease as it should be - aggressively.

Good luck with it, and with making a family. I’m starting the long trip back to see mine tomorrow :slight_smile:

25

Thank you dmarajade! For the tip ...thats another thing you have to inject it and I'll have to do it myself..but Im glad that i can have a nurse come to my house to show me how to do it. Thanks again for your tip. Also i think i can get used to doing it after a while. It may take time . this is not so scary. more so was the risks but people on here like yourself have calmed my fears



DMaraJade said:

I liked the Enbrel. I preferred the pre-filled syringes over the pens since I like the control over the speed of injection. In addition, I am used to giving shots since my son has type one diabetes, so the shot stuff was not a big deal.

I'd get an itchy bump, and sometimes a bruise. Sometimes it would be a little sore, sometimes it would be fine. None of the side effects were much more than a mild distraction. If using your stomach as an injection site, pick a spot where your clothing waistline won't irritate it.

The Enbrel worked great at first for about 2 1/2 months, and then its efficacy began to dwindle. I'll be placed on Humira soon. I'm just waiting for it to arrive.

Enbrel is a miracle drug for many. Best wishes to you.

26

thank you thank you! I understand more now than i did..i feel better ..what a relief. When i meet with my dr again I'll have a new understanding. Yes i have to stop looking at it as a life sentence...thats how i feel. I have it and i have to move on. Treat it but not be soryr about it..i cant help it. We cant control it ..we can only take the meds and hope we feel better. I also try to help myself by keeping active, by exercising as much as I can...i could eat better though! And sleep more. But that's not easy. We can only do so much. My husband and I always wanted 3 kids. We have 2 right now. We'll see. Have a safe trip back to your family Jen.

Jen said:

It is emotional and scary - the disease itself, the drugs, the concept of a life sentence (until you find a different way to look at it).

We are not nuts (though who could blame us if we were!??!), and the decisions are hard (hmm, the one with the box that says cancer, or the chemo drug that messes with your liver, among other things..... Chocolate or Strawberry?) .

I've made a few pleas for help that were far more emotional than yours on this board, and found great support , that's what everyone is here for :).

Do make sure you do you research and know your options - but to be honest, it sounds like you really do have some good things going for you - a Rhuemy who knows his stuff, isn't dismissive, and wants to treat the disease as it should be - aggressively.

Good luck with it, and with making a family. I'm starting the long trip back to see mine tomorrow :)
27

I keep going back to Enbrel everytime another drug fails me. When I first took it 11 yrs ago, it put me in remission. After about 2 yrs it slowly stopped working. However, it still does work somewhat for me, which is more than I can say for the other meds.

In the beginning we patients mixed up the med ourself, and injected twice a week. Then they started doing prefilled syringes with preservatives for a once weekly injection. Those sting somewhat. I just went back to Enbrel 2 weeks ago after many years off, and for the first time got the auto-injector. Holy crap it hurts! The med itself doesn't hurt (like Humira), and it's not all auto-injectors (the Simponi one was much less painful), but the Enbrel one is both hard for me to do with the little button on the top, and the needle feels like a harpoon going in my thigh (the only place I can manage to do it).

Good thing the auto-injectors were a sample from the doc: I have requested my new prescription to be 25mg / twice a week, without the auto-injector, just the syringe.

28

Nobody thinks you are nut case Bee.... We have all been where you are. Well this thing about having more KIDS when you already have kids (plural) is concerning...........

(My wife and I adopted 9 and are have a second generation due to some tragic circumstances so I'm really just kidding)

29

are you kidding about the "concerning" comment... you said "Well this thing about having more KIDS when you already have kids (plural) is concerning..........."

Huh? I dont understand.

i dont think 3 kids will be too many. And Im capable of looking after them. Im quite active. Any pain i have doesnt really slow me down. And maybe if I get on enbrel that will prevent any future damage. Like I said i wasnt doing bad on mtx. And my husband is great too. Really involved.

30

The majority of women have a remission during pregnancy, and the mother of all flares within a few months after childbirth. If you have another baby, make sure you plan ahead for that post-partum flare with extra help, food prep, the whole nine yards. I had times I couldn't hold my children during the post-partum flare. It's tough.

I would hate for my PsA to get worse if I was to get pregnant and not take anything. My dr was reassuring when he said enbrel will probably take all your symptoms away and pregnancy will be better experience.


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I said I was kidding, I have 9, and are starting over, of course I think its great. Good luck.
beecreek said:

are you kidding about the "concerning" comment... you said "Well this thing about having more KIDS when you already have kids (plural) is concerning..........."

Huh? I dont understand.

i dont think 3 kids will be too many. And Im capable of looking after them. Im quite active. Any pain i have doesnt really slow me down. And maybe if I get on enbrel that will prevent any future damage. Like I said i wasnt doing bad on mtx. And my husband is great too. Really involved.

y
32

It is going to get better. Give it some time to work and find the right amount that will help your situation. I take Infliximab ( Remacaid) and took 2 months to really help. Now I have to find the correct amount that will work. I don't take Enbrel but have found some sort of solution i think will work out in the end, Getting better slowly here.

33

Saw rheumatologist today - I will be joining the Enbrel club now. I do hope it is a miracle drug. This current flare up is such a drag.

34

It was December 7, when I posted this discussion. Today is January 22. I am feeling pretty good, and it seems that gradually I am getting better with each week and each dose. Less pain, less stiffness, but not completely free of it. I have had PsA for a least 20 years but was diagnosed only a couple of years ago. I took methetrexate for a year and it worked OK, but I still had to take narcotic pain killers. At present, I take a low dose of Tramadol now and then for soreness and stiffness from exercise. Oh by the way, I am able to exercise. I am very happy and hopeful currently with Enbrel.

Right before I started taking Enbrel I had SI joint injections for hip and back pain. I had a serious reaction to the injections. They may have helped with some of my pain, but I would not recommend them. I also had 6 weeks of PT and I am continuing what I learned there. I have had PT numerous times over the years without the same results. I attribute my current well-being to the Enbrel. The only side effects have been a slight redness and itching at the injection site.

35

Remember to give it time. For some people, they can feel better almost immediately. For others, it can take weeks or months. I started in September and I am just now starting to feel better. I am not 100% pain free but I am able to dosomethings I was not able to do awhile back. I hope it works..keep us posted.

36

Hello! I have been taking Enbrel for over 12 years. I still hesitate sometimes when I got to jab myself. I guess I stop for a second and wonder why I'm willingly sticking myself with this needle?!

Anyway, I noticed some relief within two weeks. I think it was mainly the swelling at first. After two months the P under my fingernails was pretty much gone and after 6 months my toe nails were mostly clear.

I don't like the auto-pens (sureclick) I like the pre-filled better. I like to get it from the fridge hold it in my hand for a couple minutes to warm it up and control the flow and angle myself. I inject in my stomach alternating left side one week right the next. I wipe the area with an alcohol pad, pinch some fat, jab, let go, inject, and wipe again with the alcohol pad. I have never had side effects other than minor itching and slight red/pink around the site.

If I feel like I'm coming down with a bad cold I don't take my injection untill I feel better. Other than that, I have not had any problem.

37

Thanks everyone. Haven’t actually got it yet as waiting for paperwork etc to go through. I’ll keep you posted!