there is hope after all/ enbrel is wonderful

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!

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.

 

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

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.

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.   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?  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