Trying to decide if I should start Enbrel... | Arthritis Information
I saw my Rheumy today and she again brought up Enbrel to me. She has mentioned it several times that she thinks I am a good candidate for it. She has talked with me about the risks and benefits and what her other patients have said (all great things).
I've read bits and pieces on this forum about others and thier Enbrel experiences, some not too good.
Any opinions about Enbrel? Did you feel any different after the first injection? Do you feel tired or wiped out like some people do when they get their Methorexate shots? I have heard it's very expensive so I should probably talk with my insurance to see if it's covered too.
Thanks!
Kelly
Kelly,
I loved Enbrel and it worked right from the start for me. I felt amazing relief the next day after the first injection. I took it for over seven years (almost eight). During the time that I used Enbrel, I was able to feel great without Methotrexate or anything else other than Aleve or sometimes Tylenol. I've had RA for 40 years; for me, it was one of the most effective meds I've used. GOOD LUCK TO YOU...KNOW IT'S HARD TO MAKE THE DECISION.
Hi Sharon,
May I ask why you stopped using Enbrel? Did you have side affects or did it stop working?
I just saw the Enbrel forum on here and have been reading all the posts there. Most sound wonderful, there are a few in there that really scare me. (heart arythmias, cardiac arrest, MS) So, I'm still trying to figure out if MTX is better or Enbrel. I'm on a low dose of MTX and slowly climbing every few weeks but havent had any real relief yet.
Just curious why you stopped. I hope you are still getting the same relief now you did on Enbrel.
Kelly
[QUOTE=klynn141]I saw my Rheumy today and she again brought up Enbrel to me. She has mentioned it several times that she thinks I am a good candidate for it. She has talked with me about the risks and benefits and what her other patients have said (all great things).[/quote]
Did you tell your rheumatologist of your great concern and worry with regards to your lungs/cough? And your ongoing worries related to your thyroid? Did you tell her that you have pending appointments with specialists to pursue answers to your questions related to your chronic cough/cold and your labile thyroid testing?
One of the cautions related to biologics, included Enbrel is not to begin therapy if you are experiencing any type of infection and you have mentioned "chronic cold" and fever as something you have been battling. Personally, I would be hesitant to make any changes in your situation until all your cares and worries have been addressed, including your latest diagnosis of somatization disorder.
As have been discussed before, MTX takes as much as a few months to be effective and if I remember correctly you are on a very low dose. Unless you are experiencing joint erosion and marked synovitis, it might be a good idea to give the MTX a chance to build-up in your system. [quote]
Hi Kelly,
I have been on enbrel for a year now. It took me about a month before I truly recognised a change. Enbrel gave me back a lot of my energy. I love it and have had great results from it. Good luck in your decision. HG
edited for spelling
hiking_gal2009-10-07 15:44:18I was on Enbrel and felt IMMEDIATE results. It was awesome. The ONLY reason I'm off it is because I had multiple URI's which forced me to stop taking it and each time I restarted it, it became less effective. Good luck in your decision.
Phats
I took Enbrel and felt better in about two weeks. Had to stop it because of MS type problems. remember with this drug you are trying to fool Mothe Nature and sometimes she does not like thatKelly,
I quit Enbrel because it stopped working for me . After about seven years of feeling great it just didn't do the job. I switched to Humira for a few months, went back to Enbrel and then (after about another year) my doctor decided to try Orencia. I did have some skin problems after about five years on Enbrel....none of which would have made me quit. My skin (which has always been sensitive) became a little more sensitive. I did develop flat warts on my legs which the skin doctor thought was related to Enbrel. I've been off Enbrel for one and one-half years and my skin is still sensitive and still am bothered by the warts (which really don't show) so who knows for sure what caused them. I hope this info is of some help to you.
Sharon
I'm on enbrel.... have been for a year and a half.. it gave me my life back...
Though I've had to stop it repeatedly for infections.. I am hoping that these are fewer and farther between..
Each subsequent restart of the medicine was again great relief.
My RD states I have only TWO joints at this time w/ active synovial inflammations.... (wooo hooo!!)
BUT...
and I stress this..
Please re=read Shug's posting above..
You should NOT start this medication if you have ANY infection whatsoever.. It will quickly escalate and can/will cause you great troubles...
best to you
I have been on Enbrel for about 4 years. I get more energy when I'm on it and I don't have any erosions so far. I still have some swollen joints although I'm still functional. I've had to go off it occasionally when I get an upper respiratory infection, but usually it kicks in again after a few weeks. It's not a cure,but it does make a difference.
Linda
I have read, from other posters on RA websites, that the cost of enbrel for a month's supply, ranged from ,500 to ,800.
You should check with your insurance's drug benefit plan, if enbrel is on its drug formulary list, and if there is a copay, or if, as more plans are doing, it is classified as a Tier IV drug, which then would cost the insuree sometimes a third of the actual cost of the drug.
I LOVED Enbrell. It worked from the first shot, and I have not felt as good as when I was on it..
Sadly, it stopped working at about 5 months.. But while it worked I had tremendous energy, and virtually no pain.. I remember the second week I was on it I cleaned my attic.. completley clean down to the floor joists removing 20 years worth of crap.. Also doing tons of gardening, including completely reshaping a 100 year old neglected lilac bush..
Go for it.
I personally take all the warnigs and side effects with a grain of salt.. They have to report everything I'm amazed the dont include car accidents or dating woes as side effects.
I have a post I make often about doing the shot.. Ill include that.
How to give yourself a shot...
I was a needle wuss.
Even though the Enbrel, and the Humira pooped out on me I am so proud that I became adept at self injecting..
It is such a non issue now. I used to faint at finger tip blood tests..Here is what works for me.
First thing give yourself time, this isn't a facial, but it is something you are doing for you. treat it like a gift. fix a cup of coffee, go someplace quiet, play calming music.
Make sure the syringe is WARM. your body is 98.6... room temp will be a shock. I rest the syringe across the top of my coffee mug. Then just before I inject I roll it between my palms.
Ice the area of your tummy you will inject. Get it REALLY cold. I have an ice pack in a light t shirt, and leave it there for a good long time. You want that area numb. Wipe your tummy with the alcohol pad and let it dry.. Completely. The sting is mostly from wet alcohol on your skin.
Pinch up a roll of flab about the size of your thumb and finger together, check the syringe, and gently push the plunger in a little to get the air out of the syringe..
Hold the syringe like you are throwing a dart, and slide the point into the skin you have pinched up. The ice will have numbed it so much you won't feel the needle slide in.
Release the flab, and shift your fingers on the needle holding it between the index and middle finger, with the thumb on the plunger.
SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."
You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.
You can do it
Thank you all for your stories and advice, I do appreciate it.
Kathy_in_wlsv: I will definatley come back to this before starting Enbrel on how to give myself a shot, thank you for all the details as I'd be wondering about every step and probably be on the phone with the dr.!
SPELUNKER: You always Amaze me! You remember more about me then my doctors do! lol I had my mom go with me for support to my rheumy appt. She's been on the phone with me during all my ups and downs and knows how to politely ask the doctors the things I'm afraid to say. All those issues came out to my Rhuematologist. She was very kind, spent lots of time with us talking. She did refer me to a lung specialist (even though I already made an appt) just to be on the safe side. She also referred me to a psychiatrist she said he is really good with anxiety and can help with that portion so I'm not going to my regular PCP for everything and they can focus on specific things for me. I did express how frustrated I've been going to the doctor for the same issues. She said sometimes its a leap of faith to trust medicine and trust what the doctor thinks is wrong. Asthma/allergies she said can come on later in life and sometimes they dont have the answers we are hoping to here. She highly recommended sticking with my PCP and says he is a very good doctor, very knowledgeable. So I think her just talking with me helped and after I get my specialist appts done and hopefully a good clean bill of health from both, then I will just trust them and keep truckin along. My rheumy did increase my prednisone to 10mg with a taper this week to see if it would help with my fatigue. it's been very hard to get through work. I am still on a low dose of MTX and going today to .3 cc's . I will try and be patient and look forward to my specialist appts to make sure I'm ok before thinking of starting Enbrel. She did explain all the risks, she said 2-3x fold risk of infections and went through the list.
Thanks again everyone!
Kelly
I took Enbrel for close to 5 years and it worked well for me. I had several stops and starts each year due to infections or surgeries. I began to develop hives about 3 years ago that continued to worsen despite changes in diet. My RD now believes the Enbrel was the main culprit of the hives. I switched to Humira last spring for 3 months, but didn't feel the benefit that I did with Enbrel, so, back to Enbrel this summer and a return of the rashes (with a vengeance!
I've been on Enbrel for almost 2 years now. I had dramatic results just after my 2nd shot. I delayed trying it when my RD suggested because I didn't think my insurance company would pay for it. After months of my RD suggesting it, I finally decided to try it. The insurance did pay for it and after the 2nd shot, I wished I hadn't waited so long. Kweenb: That's EXACTLY what my Rheumatologist said her patients have told her. It's a big decision and they wait and wait and wait...finally decide to try and tell her they dont know why they waited so long, that they feel great! I'm gonna be one of those that wait...i want to be sure before i just say yes.Do you think you have to have Severe RA to start a biologic? I am very fatigued and have maybe 5-6 joints at a time affected, some hurt bad for a few days and move on to another spot. I just wonder if biologic drugs are for people where other drugs have failed, or their disease is very dibilitating? Do you think it's overkill ?I've been on enbrel for 5 or 6 months and I love it. I definitely would not put myself in the " severe" category. I think that if your doctor thought it was over kill, she probably wouldn't be suggesting it.
I also resisted moving up the med ladder, but my RD finally convinced me. He said that joint destruction is not the only risk of RA and that I owe it to myself and my family to get this thing as well controlled as possible.
[QUOTE=klynn141]Do you think you have to have Severe RA to start a biologic?[/quote]No
[quote] I am very fatigued and have maybe 5-6 joints at a time affected, some hurt bad for a few days and move on to another spot. I just wonder if biologic drugs are for people where other drugs have failed, or their disease is very dibilitating?[/quote]No
[quote] Do you think it's overkill ?[/QUOTE]No!
The mantra: early, aggressive treatment; tight control; remission.
I've been on enbrel for a little over two years now with no complaints. It took about 3 months to feel the full effect. Prior to starting enbrel, I thought I'd have to quit work or go to p/t, but I'm still doing fulltime and handling it pretty well. Tired at the end of day? Sure - but much better than before. I think mtx adds to some fatigue too. Only 1 or 2 joints were tender at my last appt and I go with less naps on weekends now, so feel pretty controlled. I consider my RA moderate and I think it was appropriate to add enbrel. I really don't think I'd be where I am at without it.
It is a tough decision to make and not one made lightly. I wish you the best.
Cathy
I started Enbrel about a month ago and I love it. It took about 2 injections before I felt true relieft but I really do like it. I was on Remicade for many years and then recently on Humira but I didn't get anything from that except a very gassy painful stomach for about 3 days after I would take it. I hope it will work as good for you as it did for me. Sandy
[QUOTE=Spelunker] [QUOTE=klynn141]Do you think you have to have Severe RA to start a biologic?[/quote]No
[quote] I am very fatigued and have maybe 5-6 joints at a time affected, some hurt bad for a few days and move on to another spot. I just wonder if biologic drugs are for people where other drugs have failed, or their disease is very dibilitating?[/quote]No
[quote] Do you think it's overkill ?[/QUOTE]No!
The mantra: early, aggressive treatment; tight control; remission.
[/QUOTE]
"I just wonder if biologic drugs are for people where other drugs have failed, or their disease is very dibilitating?"
Not sure why you would think that when the research and studies state that you can achieve clinical remission easier and quicker in the early stages of the disease. Why would you want to wait until damage occurs before you start a biologic?
Also, a big NO from me to all your questions. Please research RA clinical remission and see how it's achieved and how much easier it is to do early on in the disease. L
Do not let this large sum of money daunt you!!
There is patient assistance...
[QUOTE=Joie]I have read, from other posters on RA websites, that the cost of enbrel for a month's supply, ranged from $1,500 to ,800.
You should check with your insurance's drug benefit plan, if enbrel is on its drug formulary list, and if there is a copay, or if, as more plans are doing, it is classified as a Tier IV drug, which then would cost the insuree sometimes a third of the actual cost of the drug.
[/QUOTE]
[QUOTE=klynn141] I have heard it's very expensive so I should probably talk with my insurance to see if it's covered too.[/QUOTE]
Check with your insurance but also with Enbrel. They have a great assistance program if you have insurance. You don't pay a co pay for the 1st 6 months and then it is .00 for the next 6 and then reapply. The only qualifing you have is you have to have insurance. Sandy
Enbrel is for moderate to severe RA
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