Existing with RA

Iam on the second try. First try caught a bad cold and had to stop, now I am going on my third month and the results are questionable because I am still on prednisone and . Next month I will start cutting back to see if the Enbrel is working for real. It is an up hill battle and patience is the #1 helper. I have some some days that I just want to quit everything and just lay down and give up but the fighter in me keeps me going. Give Enbrel a chance to work or you will never know if it's helping you or not. Side effects are different with everyone specially if you are on other med. Good luck!!

Hi--I wonder if most of your side effects are not related to the predisone than the enbrel.  I have had to take several rounds of prednisone and although it really helps the side effects make me absolutely squirrely--rapid heart, sweating, lack of concentration, etc.  I could go on and on and on but it gets boring as I am sure you and everyone reading this knows them all.

Give it a chance and if the enbrel still gives you problems try humira if you have not.  I took that for about a year and it suddenly stopped working.  When it did work it was great.  I have a friend who took enbrel from almost the time it was available and only recently had to stop taking it because the effectiveness wore off.  She tried humira and it did nothing.  She is now taking the remicade infusion [which gives me cold chills] and says it is wonderful and working well.  Her RA is really bad and she has had it for years.

Good luck!

daisy

Hi!! Thank you for your input and it is funny because I just came back from a short vacation by the beach and it did wonders. I started coming down from the prednison slowly. I am a little scared because the last time as soon as I tapered it off my flares came up even stronger I am being cautious this time. My problem is that I already want to go back to work and I am scared to push my body. How long have you had RA?

Lots of luck.

Hi!! sorry I did not reply sooner but I had to go away for a couple of days. I also have bad depression and have to have my anti-depressants adjusted regularly.  It is not fun to have this disease because you feel like you have different personalities, I can go days feeling like I am finally on the right track of medications only to wake up like a complete nut a couple of days later. I have been coming down prednisone slowly and I am actually terrified if Enbrel is really doing the job. Since I started Enbrel My eyesight has gotten really bad and I have this weird feelings of floating and I have fallen a couple of times.  I just had a brain CT Scan because the drs. said I had symptoms of ms. I go to the dr. this week I will keep you posted. In the meantime remember you are not alone and if the depression gets out of hand try to keep a journal it has helped me a lot. God Bless you and keep you safe,

Unipat

My experience with Enbrel was frightening.  The first three weekly injections did not produce serious side effects, just a mild numbness at the injection site.  The day after my fourth injection, my heart was pounding and my legs swelled up and became very red (almost purple) from my knees to my feet.  Needless to say, I stopped using it after that.  I've had side effects with other drugs as well, six different ones in the past 18 months so I'm rather frustrated.  By the way, I still have neuropathy in my leg, the site of the last Enbrel injection which was about 10 months ago.

I am very sorry for not getting back to you sooner. I am having a hard time dealing with all this meds and often wonder is it worth it but only time will tell.  Let me know how you are doing and how is your body handling the Enbrel. Hope to hear from you soon!!!!

I think you responded very fast.  I just wrote yesterday. 

I started taking Enbrel shots in 2004 and it took almost 6 months for it to take affect.  At the time I was in a lot of pain in my knees and fingers.  It worked great for 2 1/2 years.  I haven't taken Enbrel since May 2006 because I had a bad reaction.  I became numb from the chest down clear to my toes.  I quit taking shots right away and it took 9 months for it to clear and it went out thru my toes.  I didn't feel good most of the time but I kept going cuz I was still working.  However, my dr recommended that I start taking Methotrexate and I started that in Dec. 2006.  In January 2008 I started having some more  reactions.  The only description that I have is I had electrical shocks in my left leg.  They were so bad that I would have to stop whatever I was doing until they subsided.  I finally quit taking the Methotrexate in June 2008 but I have had various degrees of shocks and numbness and my legs sometimes feel like they are on fire and my legs are weak and I cannot do any exercise of which I have been active, swimming and walking etc.  I wanted to know if anyone else has had these symptoms. I now have a lesion on the upper thorax and somehow I think that the Enbrel has damaged the myelin of my spine causing these latest problems.   I thought it was interesting that before I had this reaction I got calls and literature from the supporting agency of Enbrel.  Right now I can't remember their name. When the dr reported my  condition I quit getting info. Interesting?? 

I am sorry that you are not feeling well, dealing with the meds etc.  It is tough.  I still think I am pretty good since I don't have much swelling.  But it is so difficult to get thru some days especially the weather fronts that come thru.  I take a lot of Aleve Which seems to help some. 

Is Enbrel not working for you?  How bad is your RA?