To take Enbrel or to not take Enbrel.... | Arthritis Information

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OMG.... I have been going back and fourth with this question for months now. My dr. wants me to try it everytime I see her.

I read great things about it, then awful things: side affects...weight gain (which prednisone and anxiety med is doing fabulously on its own thank you very much),  sinus infections which caused one person to be hospitalized...etc.
 
I really honestly just dont know what to do. I wish I could look into the future and see what to do.  I know I've asked a few questions already on here about Enbrel and your experiences...I guess I was hoping someone would tell me something maybe their doctor has told them when trying to figure out whether to start Enbrel or not...or just say some magic words to make me fall one way or the other!
 
Where I'm at right now:  I've been on methotrexate since Sept 3rd. started at 2.5mg, have been increasing slowly. Now at 12.5mg (have been on this dose for 3 weeks now). My joints have gotten worse, hurt more and affecting a lot of areas instead of a few. Dr. said each new dose doesnt take full affect for 6-8 weeks. So, do I wait it out 3 or more weeks to see if 12.5mg will work and hope I dont get worse, or just bite the bullet and try Enbrel?  Like eveyrone else I'm sure, I'm scared of getting sick from Enbrel. I have frequent colds that i hang on to for weeks and weeks. I rarely don't have a cold or cough and worry Enbrel will make things a whole lot worse. My doctors response was that she has heard from her patients that take Enbrel, some do catch more colds/infections, and others actually have said they catch less. She thinks they catch less do to your body is not working so hard to fight RA, and now with Enbrel taking care of RA, it has a chance to fight off the other infections/colds etc. which I thought was an interesting theory.
 
Thanks for listening to me...any new advice that I may not have heard before , please let me know! Thanks!
have you gotten a second opinion?  while it may seem true that enbrel might be the best option it by no means is your only option.  For example 12.5 mg of MTX is still on the low side, doses over 20 mg are not unheard of..I was on 27.5 mg for a very long time.  You can combime  the mtx with plaquenil or sulfasalazine or add minocycline.  You an also add or change to arava and see how you do with that.
 
Personally if I were in your quandry I would go and see another rheumatologist and get a fresh look and ideas 
 
Hi Kelly,
 
I don't have any words of wisdom here but I have been on Enbrel for over a year and it gave me my life back.  I have the energy that I did not have before.  I told myself I would give it a try for 6 months and if I responded well to it I was willing to run the risks.  I mean every medication has a scary side effect attached to it.  I didn't seem to get more infections than normal.  Maybe you could give yourself a try on it for a specific period of time (like 6 months).  That would not be too long and you would know if it worked well for you and then you can make a choice to continue it or discontinue it.  Good luck making the decision....that is always the worse part.  HG
Thanks buckeye. I do really trust and like my rheumy. She keeps suggesting Enbrel but just says to think about it .  Yeah, I kind of thought maybe another drug added to my mtx might help rather than jumping right to Enbrel. I'll go do some research on Arava... I did have Plaquenil a year ago, was great on it, then had an episode of many weeks of severe fatigue and being sick. I wasnt sure if it had to do with Plaquenil or not, and doctors couldnt tell me either so said to stay off of it.Hi Hiking Gal:  See, now that comment makes me think I should try it. That's not a bad way to look at things. (give it a try for a short period of time).  I worry about long term affects as well since there aren't many studies past 10 yrs with biologics that I can find. I'm glad it's worked so well for you and that you havent gotten terribly sick with colds etc ...and you're right, every drug has risks.
 
Having my RA get worse and not be able to get it under control later when I finally decide to try Enbrel worries me as well. I've noticed this disease causing trouble on much more than just my joints, so maybe I should give it a shot . 
trusting your dr has nothing to do with getting a second opinion.  Have you ever been looking all over the place for something and someone else walks into the room and finds it  immediately?  For me a 2nd opinion is like that...its getting a fresh pair of eyes and a new opinion to look at things for you..its gathering more information..just like you are doing here...the only difference is another rheumatologist is a professional dr not just playing one on the internet like we are :)buckeye2009-12-09 14:07:32Klynn141,
 
I've been sick less often since I started Enbrel.  I'm not sure if that's the norm, but that's what happened to me.  Like Hiking_Gal, it gave me my life back too. 
 
After suggesting Enbrel several times, and me saying no, my RD finally asked why I was afraid to try it.  I told him I was afraid of getting Lymphoma and then we talked in length about the studies.  You should talk to your RD openly about your concerns.  Maybe it will help you make a decision.
 
For me, I had to try something.  I was at my worst and didn't think I could go on any longer like I was.  I couldn't function.  I feel lucky that I had a patient and understanding boss.  
 

I've never been sick often in the past and in the two + years on enbrel, that hasn't changed.    Since Aug 07,  I've had the flu once and a horrible head cold the following year, but that's no worse than anyone else.   No other side effects and I've lost weight, not gained.   Adding enbrel to mtx made a difference in my fatigue and taking care of that lingering joint inflammation.   But, I did not add enbrel until after I reached 25 mg of mtx.  May just be my RD's approach, but she increased 2.5 every month, going from a beginning dose of 12.5, ending at 25.  She felt if there was not signifcant change in one month, it was time to bump it up.   And, if 25 mg didn't take care of it after a month, add enbrel.    

In my opinion, 12.5 isn't a very high dose to base success on.   If you're having increased activity, why not increase mtx sooner than every 6-8 weeks?      I'm with Buckeye - a 2nd opinion doesn't mean lack of trust, it just means  you're taking that extra step in deciding what your options are.     
12.5 mg. of MXT is usually the starting dose.  I think your RD started you off on such a low dose due to your concerns about the meds. 
 
I wasn't nearly as concerned about the meds as I was about the complications and damage from Ra. 
 
The damage and complications can happen over a few months time or years, it depends on how you react to the disease.  There are no factors that will predict how quickly damage and complications can occur. 
 
To be honest you're just putting off the inevitable.  All the drugs have side effects and complcations.  If I was as undecided as you appear to be I'd seek a second opinion.   Like Buckeye said a fresh pair of eyes and ears may be what you need. 
 
We can only tell you so much and give you a limited amount of information, only you can make the decision.  Lindy
I was in a very similar position recently.  I took enbrel for the 1st time last week.
 
I certainly agonized over it.
 
I have a rather stern RD.  She seemed annoyed I didn't agree with her.  My argument was I didn't think I was in enough pain to try a biologic.
 
I needed to make a decision and I did decide on Enbrel.  I was taking 20 milligrams of MTX and will continue at that level for a while.
 
 
 
All went well and I feel fine.  I guess eveyone has to make their own decision.
 
I think I have a hard time coming to terms with the idea I'm not going to get over it.
 
Good luck whatever you decide.
 
Try it.
I've been on enbrel and 25mg mtx for 8 months. I used to get sick all the time but I am rarely sick now. My RD says he sees this frequently. A person with RA can have an over active immune system, attacking every germ that comes along. He says the drugs help the immune system be more organized. I could not see how a person with chronic sinus infections, bronchitis, and pneumonia, was going to survive being immune supressed..... But it worked just like he said it would. I've had 1 sinus infection since march. For me, that's unheard of.
Good luck with your decision. Thank you everyone for your opinoins, I do appreciate it. I think this has helped. I'll let you know when I try Enbrel. Lindy you are right, the complications from RA scare me just as much. I am seeing how active this disease is with me in just a short period of time and told my husband, I cant imagine what I will be like in 5 years if this is the rate it's progressing. I'd hate to think I didnt try Enbrel soon enough, and had other irreversible complications come up.
 
Thank you again...
 
Kelly
Klynn....aside of a itchy red patch at the shot site, and that only in the beginning, I haven't had any side effects from enbrel.  I rarely got sick before RA, and I still very rarely even catch a cold while on enbrel.  Haven't gained an ounce, or any other bad thing.  What I gained from enbrel is having the ability once again top walk like a normal person.  To do what I want when I want, to go through most of my days without being in a pain med induced haze, to enjoy life and be myself again. And to go on with this disease with the knowledge that I am doing what I can today to avoid disability in my future.
 
If you trust your dr and she is encouraging you to try enbrel, I think you should do it.  It's not like you have to make a life long, binding commitment to taking it. You can always stop whenever you want to.
Good luck Kelly, with whatever decision you make. I have no experiance with enbrel but I understand your concerns. I hope it all works out for you.
 
Lisa
I delayed for a year but at 20mg of MTX plus planquinel, plus 3 mg. of predisone plus salsalate it wasn't getting better.  It scared me also.  The nurse told me any bioligic is the only RA drug where you can actually decrease the use of other drugs.  That was motivating.  I am now down to 12.5 mg. of MTX and 1 mg. of predinose.  If the drug works it will dramatically change how you feel.  I have had 2 colds in the past 1.5 years and the one was horrible ( 1 month of antibiotics).  I constantly wash my hands, stay away from sick people and take care of myself so I am not suspeptible.  I take enbrel because it has been on the market for over 10 years and the data out is good. 
 
Who really wants to make any of these choices, but uncontrolled inflamation can lead to heart disease, etc.
Kelly, I did the same thing as you waited and waited to make up my mind about embrel. I never really got sick but I had infection after infection from it I have tried it for 2 years now and now my doctor said no more because the last infection I got was in the lungs so no more enbrel. If I were you I would try it and it may do wonders for you. GOD BLESS YOU IF IT DOES WITH NO INFECTIONS. I took 50mg sureclick thats what you want easy to give. I always gave it in stomach because on the upper part of leg really burned. Good Luck to you. Let us know if you do and how it is going. Joan well I am planning to start it, took the TB test, have the script, but lastnight i tossed and turned dreaming about starting it. It's really freaking me out . I'm worried since I'm sick with colds constantly that as soon as I start it I'll get really really sick.

Angel: I'm sorry it didnt work out for you. That's exactly what I'm worried about... I hope you've found something else to help your RA??? Are you on another biologic or did they say no to all biologics?
 
MJ: Thats what gets me excited, If Enbrel does work, to possibly be able to get off all my other meds (prednisone and Methotrexate).MTX is causing lots of side affects for me.
 
I guess I just need to stop being a wuss, and try it. That's all we can do is try to see what works for all of us.
Enbrel worked great for me for about a year. No infections no sickness just energy and much much less pain. Then it seemed it wasn't working anymore but that one year was wonderful. I have a friend who is a pharmacist and asked him what he thought about taking all these ra drugs and the side effects. He said, "take them! the ra itself will make your life miserable and you don't want to end up crippled in a wheelchair." So I have taken his advice and have tried countless drugs. Several I was allergic to, some didn't work and some worked for a while. I am going on 4 years now since my dx. I go next Monday to a new rd and have nothing left but infusions which kind of scare me. But I DO NOT want to be crippled in a wheelchair or in lots of pain so I will go with the flo and see what rd says. Good luck and I hope it works and gives you much relief!hi, i thought i'd try and help. One big thing, is all the meds can be scary.. but so is the
disease!!
 I've now been on Embrel and its the little things, actually BIG, i can get out of the bed, in the morning, (my mattress is on the floor) and realized NO Joint pain, NO morning stiffness!
 I can actually walk a few blocks, easily, tho slowly..
(if my depression wasn't so bad, I'd be trying to,  up what i could do..still one of my goals.. i'm just .. slow).
 I'm not on pred or mtx, haven't been on those, for about a yr.. been on embrel hmm since..
august?? not sure! lol
 I read the side effects, once and yes, they scared me, but its that way w/ any disease..
like hiking gal, i feel l have more of my life back. I still have major Fatigue, but WOW getting up... no major joint pain or hrs of stiffness!!
 I'm more of a loner and I do make sure to stay away people, crowds to not get the flu/ sick, etc.. I also take large doses of vit C, if i do feel sick.
 ..
I would just jump in, but thats me, how bad do you hurt? thats what I think you need to ask  yourself.... I was at a point, where i had no life... I still have someone that helps do housework / carry things.. i'm just being careful.. but this is the best, I've been at, in
over 4 yrs!!!!
 I just keep hoping it keeps working and that I have no side effects.
... The sureclick pens, I also recommend, I take before sleep and w/ valium, its no biggie, 10 seconds of burn, big woo, compared to diabetics, who have to do it several times, daily.. inject.. once a wk.. easy..(and i hate needles) but hey I can WALK!!!!
 Its up to me, to do more rehab and I'm at the point where I actualy can.. notice how much i've been gone from the board, so maybe its been longer.... and only bc i do feel better :)
  So good luck and hugs!
Nothing is easy about this illness..ps: i just noticed you lived in Seattle.. O.. M.. G.. how??????
 I flew in, to visit my mom, end of Oct and before the plane, even landed, I could feel my joints swelling.. Noooo f way, could i live there full time... the rain.. omg, the rain, the grey!
 I told my mom.. July/ august.. from now on!!! LOL
(beautiful city/ gorgeous, but the weather would kill me.. esp now! )..(i was only there 3 days)..this last time.Hi Klynn,
Did you take your first dose yet?  Again, remember you can stop taking it if you have bad side effects.  Good Luck, HG
Whispered:  Thanks so much for sharing your story with me! I appreciate it!!  I 'm so glad Enbrel has been working for you. My dr. said to me she's had many patients like myself who wait and wait to try it, and once they do they tell her they can't believe they waited so long and they felt so much better.  Yep, live in Seattle... I've never lived anywhere else so I guess I'm used to the cold rainy icky whether all the time! LOL!  Where do you live? You said this hasnt helped your fatigue? That part probably sucks...I'm sorry. That's got to be one of the hardest parts as everyone has said on this board about having RA.  I wish you the best with this drug and hope it keeps working for you for a long long time!!! (and ofcoarse with no serious side affects!)
 
Hiking Gal:  Nope , havent started yet. Got the ok from my TB test, it's going through the "preauthorization" stuff with my insurance right now.  I tell ya though, I've had a few sleepless nights thinking about Enbrel. I am such a worry wart when it comes to trying new medications, I always think I'm going to be the "rare" exception and catch lymphoma or something! But like many others have said, Having RA can be just as bad with all those complications and make your life miserable.
 
Thanks for all the feedback and stories, I truly appreciate it!! I'll let ya know when I take my first injection. Knowing me I'll post MORE QUESTIONS! lol
 
Kelly
Kelly, have you cked with your dr about financial assistant? When I was on it my dr gave me a card from the manufacturer of enbrel and it paid for it for the first six months then I had to pay . It's a big savings! It is so expensive something like almost 00.00 a month. So ck that out and save some money. The complications are rare so don't let that scare you. Get your life back and be happy.I'm on the Enbrel assistance program too.  Everyone qualifies so ask your RD for the information before you fill your first prescription.  You have to activate the card first.  My Enbrel was also free for the first 6 months.  Now, I only pay for a month supply.
 
Also, unlike Whispered, my RA fatigue left when I started Enbrel.  Everyone is different, so I'm hoping your fatigue leaves too when you start it.
 
Keep us posted on how it goes for you!
Thank you Cindee and Kweenb! I just called my Rheumy and will be going to pick up the card today! you guys are awsome, thank you so much. This will really help!!
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