there is hope after all/ enbrel is wonderful

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koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 12/29/2008 10:06 AM (GMT -7)   
yeah  to everyone who hurting,
there is hope!!!!!!! after a year and a half of trying a lot of different meds my docs have started me on Enbrel despite my missing givings about the possible side effects. i've only been on it a few days but I feel like a million bucks. I just hope its sticks. i hope everyone can find a solution like this that works as well. it just take some persistence and little luck to find the right med.
i hope all of you can find the solutions you each need soon!!!
Thanks
Tom

leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 1/4/2009 12:47 PM (GMT -7)   

I feel the same way about Enbrel.  After having been on Pred and Methotrexate and those two just not quite cutting it, it is a relief to find a medicine that actually works.  I've been on it for 14 months now and have only had a few painful injections (if I do the injection a little too far to the outside of the upper thigh the pain is almost unbearable!  Must be a nerve there...) and no serious illnesses to report.

I'm right in the middle of my first respiratory illness that has given me a touch of concern (second respiratory illness overall since starting Enbrel).  It is very mild thank goodness but lingering a bit too long.  My good luck is in that I already have scheduled my regular Rheumy visit tomorrow at 3:00!

And honestly, my arthritis pain was so severe at one time that it not only has readjusted my idea of what pain actually is, but if I do happen to get lymphoma or some other Enbrel related illness and die 20 years earlier it will have been worth it to be able to "live" during the time I have!  I am 37 now, and if I make to to 60 with no pain that will be fine with me if the alternative is to live to 80 with constant unbearable pain!


Arthritis (poss. RA) - Doc scripts: Enbrel 50 autoinjector, Methotrexate 5 pills/week, Folic acid. 


koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 1/5/2009 12:07 PM (GMT -7)   

i hope i can avoid the infection risk with enbrel. any advice on how to do that? i understand the pain thing too. a year ago the pain was so bad i couldn't walk a step, let lone get up a help caring for our infant son. that was hard. that kind of pain makes you crazy in a hurry. i was so depressed back then, i'm glad the new meds are working so far.


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 1/5/2009 12:29 PM (GMT -7)   
I also take Enbrel and have been on it for over a year now, but I also take the MTX along with it.  I wash my hands a lot especially after using the keyboards at school, and I try my best to stay away from those who are sick.  I actually had more infections while on the MTX alone, now that I have been on Enbrel, my daughter had strep throat and I somehow managed not to get it.  However, I did get a couple of bad viruses with the body aches.  Try getting plenty of rest, and vitamins don't hurt! I take an assortment of those daily, since these meds tend to deplete your body of vitamin B12 and Calcium.
 
One thing I have noticed with these medications both the MTX and the Enbrel is that they really take a toll on your gums/teeth for whatever reason so make sure to see your dentist on a regular basis.
 
I'm glad the Enbrel is working out so well for you both.
 
 
 

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 1/6/2009 9:27 AM (GMT -7)   

Hi Leelou67,

I agree with you 100 percent about taking these drugs and the quality of life they give us.   I suffered for several years, refusing to try the new meds because of my fear of side effects. I was taking care of my parents and so afraid that if I got sick I wouldn't be able to care for them.  My Dad passed away in December of 2005 and I lost my Mom in June of 2007. 

Finally my pain got so bad and the damage to my joints was getting to the point it was difficult to use my hands - so I started out on Enbrel.  I had to switch to Humira because I had a really bad injection site reaction on the Enbrel (probably from the preservatives, they said).  Anyway - been on Humira since August and it has made my life so much better.  Both my parents died at age 86 and both of them had reached the point where there wasn't a lot of quality left to there lives.  I miss them both so much but know they are in a better place and have peace knowing I cared for them both till the end.  After watching them, there is no way I would even want to live that long.  All we have is today and I'm so grateful that today I have very little pain.  Thank God for Humira,

Alicat


psoriatic arthritis, peripheal artery disease


hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/6/2009 2:18 PM (GMT -7)   
I am in remission now but extensive damage from before and take alot of pain meds to allow myself to function. I am not able to hold down a job as the damage to my feet is to severe. Does anyone know if u are in remission will they let u take new drugs to prevent flair up. Also we have no coverage here does anyone know if the drug companies will help with the cost? It is $6000.00 for Enbrel a month and I cannot pay for that. I do not get out of the house much any more is there anyone in the same position and maybe could help with some ideas as how not to feel so isolated and lonely. I really hate this lonely business but my friends have lives busy ones and I realy can't plan much as I never know which days I can get out of bed. I have Rheumatoid Arthritis total body. Sorry if I sound sad guess I am a bit and that is another issue, sometimes I think I am feeling sorry for myself and other days it really does hurt. Any help would be wonderful.
hopeful56

koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 1/6/2009 2:54 PM (GMT -7)   

hopeful56,

on the Enbrel.com website there are links to Enliven. its a resource that might help you answer questions about covering the cost. right now Enbrel has been a miracle for me but i'm on doctor's samples. my insurance is in the process of approving or dening coverage. i hope they cover this. i don't know what i'll do if they don't. the new biological meds are the only thing that helps 98%. good luck and hang in there.


leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 1/6/2009 5:37 PM (GMT -7)   
I'm very afraid of getting sick while on Enbrel.  I wash my hands all the time, I quit biting my fingernails, and stay away from sick people.  If someone were to come to work sick I would let them have an earful, and then stay away from them.  I even time my shot so I'm in it's 60 hour half-life time when I'm not going to be around people.  I am VERY lucky in that I get to work completely from home as of 10/08, so I take the shot on Monday nights.
 
I got sick all the time while on MTX and Prednisone.  Prednisone is horrible.  It is a miracle for about a month or two, and then you can forget it.
 
My insurance will only pay for Enbrel if I get it through one of three pharmacies in the whole country.  The insurance company purchases the drug directly from the manufacturer and distributes it only through these three places.  They will not pay anything towards the cost if you get Enbrel anywhere else.  But - nobody told me any of this.  Took me weeks to figure it out, and several more weeks to actually get the process going.  Thank God they pay for it.  When I first went to the pharmacy they wanted $2k!
 
If your insurance won't pay, try to change insurance companies!  Enbrel is still very very new so hopefully as more and more people take it the cost will come down.
Arthritis (poss. RA) - Doc scripts: Enbrel 50 autoinjector, Methotrexate 5 pills/week, Folic acid. 


koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 1/7/2009 8:13 AM (GMT -7)   
I'm afraid of getting sick too. the black box warning on Enbrel would make any worried. the lack of statistics on how many people get sick or even die on Enbrel caused me to hold off for several months but i couldn't wait any longer. my condition was causing me not to life the way i should be able to at 29 years old. i have a 1 1/2 year old son and i was worried if something happen to me that i wouldn't be here for him but being in constant pain was just as bad, if not worse. at least i'm in good shape for the time being (knock on wood)

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/8/2009 9:52 AM (GMT -7)   
Hi hopeful56,  Wow, quite a story.  All of these autoimmune diseases stink!  I hate to hear that now you are just doing pain management.  I definitely understand, as a week ago I had an epidural block at the top of my neck right into the spine.  They knocked me out, only took 15 minutes, & wow all the pain is gone & my neck moves great. They usually do these shots in a series of 2, but because the pain is totally gone, we're just going to see what happens.  He injected me with Decadron. 
The past year I have done exactly what you did...isolated myself terribly. nono   It's hard to keep up & most people don't understand the pain & limitations at times.  Every day, its an uphill battle to just shower or want to shower!  I've made myself call some friends & my sister, to try to change my ways.  Alone is bad.  My husband is my rock of 35yrs & is just wonderful, but I need to re-join the world.
 
I have a question for you hopeful56.  You said you used to work.  Why are you not on disability?  idea I have had disability through Medicare since 1979 (I was 30). They pay 80% of everything and I have AARP, which pays the 20%.  It costs me $195.00 a month.  AARP offers this 20% ins if you have Medicare even if your not a senior.  So, I am totally covered for anything, except of course the $195 a month.
 
Thanks for letting me hear your story.  I wish you well.
StillStanding wink   
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