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Old 07-16-2009, 07:50 AM   #1
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Enbrel: tell me your experience – good & bad

I seem to have relapsed after having been in remission (mostly) for several years. The doc wants me to consider Enbrel but I react badly to every medication I’ve ever taken – and I’ve taken a lot of different arthritis drugs. I currently take Tylenol and Advil (not together!). Tell me about your experience with Enbrel.

Ta for any info you can provide.

 
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Old 07-30-2009, 12:26 PM   #2
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Re: Enbrel: tell me your experience – good & bad

I had six blessed years of relief on Enbrel. Unfortunately my body is no longer "fooled" by it and is outsmarting the Enbrel, I have to find another biologic. I took two 25 mg. shots per week which I pre-mixed myself, they were relatively painless. It took almost two months to fully kick in, but I began noticing improvement within three weeks. I felt quite fatigued at first. Good luck!

 
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Old 08-11-2009, 12:43 PM   #3
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Re: Enbrel: tell me your experience – good & bad

Thank you for sharing your experience.

 
Old 08-11-2009, 06:57 PM   #4
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Re: Enbrel: tell me your experience – good & bad

I had a bad experience with Enbrel. Not only did it not make me any better, it made me worse. My fatigue was terrible and I developed swelling under my skin that almost looked like huge fluid filled cysts. My doc had never seen such a thing but I found that the Mayo Clinic site keeps a listing of post-production side effects and they were prominently listed there. Post-production means side effects gathered by the company and doctors after the initial clinical trials. Those side effects are listed in the info on the drug but all the stuff that cropped up after wards is not listed anywhere...except the Mayo Clinic. Thank goodness someone is watching these drugs!

I've been off for 2 years and most of the swelling is gone except for a couple of patches on my arms that I don't think will ever go away. I'm now on Orencia and that is working well with very few side effects for me. It's just so difficult to figure out what will work for who! Rheumies have to be detectives these days.

Good luck with Enbrel and I hope it gives you relief.........Jenny

 
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Old 08-12-2009, 05:28 PM   #5
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Re: Enbrel: tell me your experience – good & bad

i have been on mtx but did not tolerate it well. tried enbrel next and it worked very well for me. not near as much fatigue and disease stable. after about 3 years, i switched to Humira. also doing well with that. the reason for the switch was increased fatigue. i had injection site reactions originally with both meds but each injection it lessened. i have been on Humira for about 3 years now.

from my experience, the biggest reason people have to stop the tnf blockers is that they did not work. have also heard of a case of dizziness.

my ra is certainly tolerable at this point. my rheumatologist stresses the problems which are incurred in the body as a whole over long term (heart problems, rheumatoid lung, anemia) therefore he believes in treating agressively.

i hope you are able to find the drug that works for you.

 
Old 09-03-2009, 05:06 PM   #6
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Re: Enbrel: tell me your experience – good & bad

I was on Meth + Prednosone for 8 month. I was so sick every day and was loosing a lot of hair since Meth is mild form of chemo therapy.
Than I was switched to Enbrel hoping to get more help from it and had to go off right after they discovered I have MS, they can't put anyone on Enbrel with MS. Enbrel did not help me much with pain, needle did not bother me at all although I always had read and inflamed area after each injection. Dr said this is OK, not to worry about.

For me Orencia IV infusion works the best. We all very different and to each it's own, right?

Best of luck to you!
MOldova

 
Old 09-04-2009, 07:29 AM   #7
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Re: Enbrel: tell me your experience – good & bad

Oh Moldova I'm so sorry about your MS diagnosis and I wish you all the very best. Thank you for replying to me. Good luck.

 
Old 09-08-2009, 07:30 PM   #8
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Re: Enbrel: tell me your experience – good & bad

I have had psoriatic arthritis for about 30 years now. I have been on Indocin, Riduara, Celebrex, and Vioxx and probably some other things. Indocin worked well for awhile but the doctor wanted to try some other things. Celebrex was like taking candy, just no taste like candy. Maybe if there were a chocolate flavor at least that part would have been good since there was no effect. Vioxx worked really well, but the good ole lawyers and such found a way to make some money while getting it pulled off the market. My rheumatologist wanted me to try Embrel which I have been on for about 2 and a half years. I have had no side effects, give myself a 50 mg shot every Sunday morning. It seems to be working. I have felt better, managed to be more active and getting more exercise, which I think also helps. But then if the medication is not working, it is very difficult to get motivated to exercise. I have had people comment that I seem to be moving better than I used to. So with all of that, I am pleased with Enbrel. I have weaned off of the Indocin, which at first I was still taking along with the shots. I know I am not cured, I still have some aches and pains and stiffness. But I am much better than some of what I went through.
I wish you well with your experience with it. The cost is rather steep and if my insurance ever kicks on it, I will probably have to figure out something else. Another help in the Enbrel QuickAssist program which helps to pay for this. I wish health care would not have to be dictated by how the insurance is going to pay, but I will not get into that in this posting. Good luck with this aggravating condition. No fun but I try to make the best of it.

rbmscc

 
Old 09-10-2009, 04:47 PM   #9
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Thumbs up Re: Enbrel: tell me your experience – good & bad

Hello, I have Reactive Arthritis (auto immune) not related to RA. However, the drugs are the same. I have been on Mtx for the last 5 years. My first DR only had me on a low dose for a year. I found a great RH Dr the 2nd year and he said I was undermedicated, put me on 2 - 50 mg shots (Mon and Thur) and 1.0 cc of Mtx a week. It took about 3 weeks to get used to all that med, but I felt better daily. It was great except that it was too late with all the knee damage and I also have Fibro which plays games with my ReA (attacks the tendons in my limbs). So I have a fight going on between the muscles and tendons.
I had to go off of both meds to have oral and sinus surgery. It was the longest year of my life. Sure I had pain meds, but the Enbrel and Mtx combo works very well for me. I went for a med check, 3 months now and the DR asked "Can you tell when it is time for your Enbrel Shots?" and I said "Of course", he then replied "then it is working for you no changes".
I have a motto "You can always try a med, and if you don't like it go off it. But if you don't try, how will you know if you could feel better".

~MK~

 
Old 06-22-2011, 05:48 PM   #10
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Re: Enbrel: tell me your experience – good & bad

Hi. I have been on Embrel for 2 1/2 to 3 years for Psoriasis. I haven't noticed any side effects till a week or so ago. I found out Monday I have a blood clot in my right leg in a shallow vein. not sure if it's Embrel related but for someone 57 in good health it seems odd. I do know once or twice I hit a vein or something cus some thick blood leaked out the injection site.

It works great for Psoriasis and maybe just a fluke I hit a vein with such a short needle but I'm wondering if it was the Embrel.

Good luck with your health.

 
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