Friday, June 01, 2012

The BIG Decision

By TamMae Thursday, April 23, 2009

So, thanks to happening upon this site last night in my quest for more info on the TNF-inhibitors, I have made my decision.  Next week when I go to my rheumy, I'm going to ask for Enbrel.  He's probably going to pass out.  Seriously, though, I am going to present my reasoning thus far, (feedback will be appreciated). When I was diagnosed in 1982/3 the treatment was aspirin, steroids and propoxyphene (Darvocet)  and this is what I was put on.  They didn't start you on DMARDs unless you were VERY advanced.  I never tested positive for Rhematoid Factor.  My parents, upon researching these meds, decided to take me to Dr, Thomas McPhereson Brown in Arlington, VA.  His unorthodox treatment was to get me off steroids, and treated RA with minocycline.  I feel that this doctor saved my life, since I have met people my own age who stayed on the steroid treatment through their teen years, and still need to be bathed and dressed by their parents.  After he died, I have been in what seems to be a perpetual search for a rheumatologist who CARES/LISTENS.  They are very rare.  I have become my own expert.  After having to get both hips replaced in '89 at the age of 21, I now had to be extra careful about infections of any sort.  Tried all the DMARDs.  Some worked fairly well, still had wicked flares, though, and in '94, '96 had to have the hips replaced agian.  Had terrible side effects with some of the DMARDs.  Almost lung infections being the deal breaker.  There has pretty much been a surgery every 2 to 3 years since 1989, so when the TNF-inhibitors came out with a bang about 8 or 9 years ago, I was in the midst of joint replacements, and since they were new, and since infection is one of the  buzz-words associated with them, I reason that A) This disease has run its course through my body, so, there are no joints that I would be protecting from damage. B) What if you take it, and get a mother infection and have to have one or more of the artificial joints taken out (worse-case scenario, I know, but see above 1989)?  Would taking the drug be worth it at this point? and finally C) Why not see if these drugs stick around a while and see what effect they have on others, before you jump in?  So earlier this year I went to a pain clinic and asked to be put on STRONG pain meds, and they kindly obliged.  Now, as I wrote before, I feel as close to "normal" as I ever have.  With this newfound energy, I have begun to wonder if I shouldn't try the TNF-inhibitor, just to see if its worth the risk to protect my ankles (the only weight bearing joints I have left that are MINE).  And if it happens to make it so I don't have to take the Kadian, MORE BETTER!  But I HAVE to stress, If any of you are in horrible pain and nothing seems to be working, PLEASE try a pain clinic.  Opioids are VERY safe IF you use them as prescribed and don't go crazy and try to climb a mountain, once you get adjusted to them. If you take them for legitimate, chronic pain, they don't make you spaced out, or high, or wacky. They really do just mask the pain, but sometimes thats all one can do with this disease, and they can help you keep moving.  When you stop moving, you are only inches away from not being able to move, and that is the scariest thing of all.

4/23/09 3:21pm

Good for You!!Cool   It is so refreshing to hear you be so positive!  I'm glad you've decided to get started on Enbrel and I'm sure you will find positive results!

You said, "Don't give up HOPE"  and that is the one thing I have been telling other to never let go of.  There is always hope and I believe that there will be a cure someday!

Thanks for sharing your story with us and being so encouraging as well!

Anonymous
Surf's Up!
4/23/09 4:57pm

Wow. You have had a long go of this disease. I can only speak about my situation. I have taken 6 Enbrel shots and take 1000 mg Naproxen a day. So far, so good. Slight reaction at the injection site (red patch, itching, some bruising for a day but not bad). I have RA in my feet and hands. This stuff took away most of the pain but can take up to 3 months to take full effect. It is very expensive, so check with your insurance. The Enbrel pharmaceutical company (Amgen/Wyeth) has an assistance plan, so your 1st 6-months might be free to you (insurance only). Also, you mentioned a physician in VA. If you don't get the results you want or want a 2nd opinion, my rheumy is Dr. Stephen Schechter in Bethesda, MD. Very nice and very informed. I hope all goes well for you! Keep us posted. :)

Anonymous
Cat Lover
4/24/09 6:26pm

I was taking Enbrel for about 3 years and it works very well!  I have severe case of RA.  It has since stopped working for me... so I am starting on Humira.  Both take about 2 weeks to 3 months to be effective, it depends on your body.  The only caution I can give is be very careful of infections, Flu's, colds, cuts, etc.  Just stop for a week or two or whatever your doctor says.  I didn't have any side effects.  It worked great for along time.  Go for it!

But thanks to you I am going to pursue a pain management doctor, I have been thinking about it for awhile.  So thank you very much!

Denise

 

4/24/09 8:57pm

Thanks for your input, Denise.  I really appreciate it.  And I'm glad you're going to see a pain specialist.  After going to one and seeing how much they empathize and help, I am surprized that rheumatologists don't recommend we go to them right away when someone continues to deal with chronic pain and can't get relief through the regular means they offer.  After reading so many posts on this site, (and considering my own situation for the last several years...) it is just a SHAME.  It can be a little rough at first because there is a certain stigma that goes with using strong pain meds if you aren't dying of cancer...but all severe pain is debilitating, and when one does the research, pain meds really aren't as scary as much of the other stuff we need to take to get through.  So GOOD FOR YOU!  You will be so glad you did once you can sleep through the night, and do some of the normal things in life!!!!

Anonymous
Cat Lover
4/24/09 9:01pm

I will call on Monday!  Thanks for the encouragement!Laughing

By TamMae— Last Modified: 12/19/10, First Published: 04/23/09