Afraid to take on Enbrel, what should I do?

May Community Member August 22, 2008
  • I was diagnosed with RA in 1994.  To stop the fast progress of the arthritis, my doctor gave me Prednisone 5 mg and stopped it in 3 days.  No wonder it is called a miracle drug.  I went through denial, depression, and desperation and tried all kinds of alternative methods.  I went through a lot of suffering.  Then I came back to Prednisone.  I slowly reduced my dose to 0mg with the help of Chinese medicine.  Right now I am on Arava, Imuran, Plaquenil, Fosamax, Vitamin D and a lot of supplements.  Life has been OK with some ups and downs and occasionally I have to get some shots at the joints.  After all these years, my pain tolerance increased.  But in April I had a flare up and restarted on 10mg of Prednisone.  I tried to reduce the dosage but my fingers and wrists would get worse.  The pain I have had these last few days were like my first RA attack in 1994.  My hands, wrists, left shoulder, right knee and feet are all puffed up.  I haven't felt so bad in so long.  Finally, my doctor ordered a body cortisone shot.  I was told that I should feel better in 2-3 days and it would work for two months. 

     

    My Rheumatologist wants me to get on Enbrel.  I really don't want to take another medicine and don't like to give myself shots.  (I used to give my mom insulin shots.)  I am so glad to find this RA sharing site and to have the chance to get in touch with people going through the same experience.  I don't know what to do.  Do I have a choice?  I am afraid that my doctor will keep pressing me to start Enbrel.  I am very worried about the side effects, the skin hardening, etc..  I will hear from my nurse about a TB test tomorrow.  I am from Asia, and when I was young, every kid got an immunization shot for TB when they were a baby that resulted in my skin test always resulting in a positive result.  They don't do this anymore.  I need to get an xray and may need to go through the TB treatment as well.  I don't know whether I should take Enbrel or not and any information about this medicine will be greatly appreciated.

11 Comments
  • Lene  Andersen
    Health Guide
    Aug. 24, 2008

    Hi there,

     

    I took Enbrel for 2 years before switching to Humira - I have fibromyalgia as well as RA and Enbrel gave me muscle pain.  However, before I took Enbrel I was in a severe flare that left me unable to do much but sit around and be in pain. I started Enbrel and got my life back. It was astounding. The injections were no big deal and now they...

    RHMLucky777

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    Hi there,

     

    I took Enbrel for 2 years before switching to Humira - I have fibromyalgia as well as RA and Enbrel gave me muscle pain.  However, before I took Enbrel I was in a severe flare that left me unable to do much but sit around and be in pain. I started Enbrel and got my life back. It was astounding. The injections were no big deal and now they have the autoinjector, so it's even easier.  Didn't notice anything about skin hardening while I was on it, although I needed to keep my skin well moisturized because it got very dry. Also drank at least 2 litres of water every day and ate like a teenaged boy without gaining weight.  I've recently talked to someone who's been on Enbrel for 10 years (part of that with a small dose of methotrexate, as well) and managed well.  For 10 years.  Incredible. 

     

    You absolutely have a choice on which medication to take or not to take - it's your body.  Your doctor doesn't make the decisions, you do. But all choices come with consequences.  Taking the meds may bring some side effects, not taking the meds may cause damage to your joints and restrict your abilities. The way I look at it, big problems need big solutions and it sounds like you're having a rather large problem with the RA right now.  It's a good idea to do some research, write down your questions and then have a discussion with your doctor about your concerns.  S/he is there to help you - ask all the questions you need to be comfortable with your treatment options.  Good luck!

    • May
      May
      Aug. 24, 2008

      Thank you for your advice. I wish that I had read your site earlier. There are so many suffering and mistake that could be avoided. I think that I will give Enbrel a shot and hope eventually the other medicine can be eliminated in the future. Right now I am taking so many pills. I am on Prednisone 10mg, Plaquenil 200mg, Imuran 100mg, Arava 20mg, Fosamax + D,...

      RHMLucky777

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      Thank you for your advice. I wish that I had read your site earlier. There are so many suffering and mistake that could be avoided. I think that I will give Enbrel a shot and hope eventually the other medicine can be eliminated in the future. Right now I am taking so many pills. I am on Prednisone 10mg, Plaquenil 200mg, Imuran 100mg, Arava 20mg, Fosamax + D, Vitamin D 50,000IU. Besides the prescription drugs, I also take quite a few supplements: Super EPA, black currant see oil, DHEA, Vitamin D3, SAMe. I recently add MSM and Glucosamine Chondroitin and was told they don't work.

       

      Today is my third day after the body cortisone shot, I do feel 80% better. Tomorrow I will contact the doctor's office and try to get on Enbrel. Thanks again for your response and it really make me feel much better.

       

    • Anonymous
      Anonymous
      Sep. 08, 2008

      Hi,

      I just wanted to throw my 2 cents in about Enbrel.  It sounds like you're making the right decision.  I'm a 24-yr-old with JRA; about 4 years ago I had a massive flare that lasted several months.  Most other drugs had failed (naproxen gave me an ulcer; prednisone, arava, celebrex didn't work; cortisone shots became less and less effective;...

      RHMLucky777

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      Hi,

      I just wanted to throw my 2 cents in about Enbrel.  It sounds like you're making the right decision.  I'm a 24-yr-old with JRA; about 4 years ago I had a massive flare that lasted several months.  Most other drugs had failed (naproxen gave me an ulcer; prednisone, arava, celebrex didn't work; cortisone shots became less and less effective; methotrexate made me so nauseated it wasn't worth taking).  My swollen knees made walking very painful, I'd lost about 60% of the range of motion in an elbow, and overall I was just very sick.  After 1 month on Enbrel all of my symptoms were gone.  It was absolutely amazing.  I took it for 3.5 years and always did the shots on my thighs, with no visible scarring (and only a little hardness).  I took no other arthritis drugs while on Enbrel.

      I've recently had to stop Enbrel because of some dental problems; the doctors weren't sure that Enbrel caused them and no one I've talked to has heard of Enbrel causing gingivitis, but stopping it seems to have started my mouth healing.  However, even with that, those 3.5 arthritis-free years were worth it!

      For travelling, I would just buy a little insulated lunch box/bag and put it in my suitcase.  The undercarriages of planes are cold anyway.  

      Good luck!

    • Anonymous
      Kim
      Oct. 17, 2008
      I too am on Enbrel and have been on it for about 6 years. It has worked its magic for me. I have not had any RA symptoms since being on this med. I am not on any other RA meds just the Enbrel. I too have dental problems. No one but me see the relationship of the RA or the Enbrel to the dental issues. I keep trying to find something. I did read that people with...
      RHMLucky777
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      I too am on Enbrel and have been on it for about 6 years. It has worked its magic for me. I have not had any RA symptoms since being on this med. I am not on any other RA meds just the Enbrel. I too have dental problems. No one but me see the relationship of the RA or the Enbrel to the dental issues. I keep trying to find something. I did read that people with RA have a double chance of getting gingivitis. My periodontist says gingivitis and bone loss is caused by infection and Enbrel keeps your body from fighting infection. I do see the relationship.
    • May
      May
      Oct. 17, 2008

      Thank you for all the inputs. I have been on Enbrel for one and half months now. After the first shot, all my symptoms were gone the next day. I am doing one shot per week and taking INH, vit.B6, prednisone, Imurin, Arava, Plaquenil, Fosamax, vit.D and quite a few supplements. The recent lab test showed my white blood cells out of normal range. The doctor may...

      RHMLucky777

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      Thank you for all the inputs. I have been on Enbrel for one and half months now. After the first shot, all my symptoms were gone the next day. I am doing one shot per week and taking INH, vit.B6, prednisone, Imurin, Arava, Plaquenil, Fosamax, vit.D and quite a few supplements. The recent lab test showed my white blood cells out of normal range. The doctor may lower the dosage on Imurin/Arava after seeing my next test.

      I have practiced Tai Chi for over 14 years. I started not long after I was diagnosed with RA. I am very fortunate to find a wonderful teacher. Tai Chi helped me tremendously. It is a gentle, relaxing exercise. You will get a total work out and sweat, but the effect is not like gym exercise. I get more energy and also sleep well at night. It is convenient that you don't need a big space or equipment. I would highly recommend Tai Chi if you are looking for some form of exercise.

      May

       

       

    • Anonymous
      RA, Fibro Lady
      May. 29, 2009

      My blood work also went out of control doing Enbrel, Plaquenil, Methotrexate, INH and B6. My doctor reduced the dose of the B6 from 100mg to 50mg and my blood work is steady now. Funny how a vitamin can do all that damage but it did.

    • Anonymous
      Anonymous
      Apr. 27, 2009

      i have been on enbrel for 3 to 4 years now,   the only thing to be aware of taking  it  is, if u are`t already,  is you can catch  a cold very easy, don`t be around no one  that  is  sick with  a cold or flu are has  a virus,  or  infection,  the enbrel does break down your ummune system, ...

      RHMLucky777

      Read More

      i have been on enbrel for 3 to 4 years now,   the only thing to be aware of taking  it  is, if u are`t already,  is you can catch  a cold very easy, don`t be around no one  that  is  sick with  a cold or flu are has  a virus,  or  infection,  the enbrel does break down your ummune system,  which will make  u  easy to catch stuff, plus  i have  had MRSA (MERCER STaFF INFECTION) WHICH U CAN CATCH ANY WHERE AT GROCERIE STORES, HOSPITALS, AND DOCTORS OFFICE, AND  IS  AIR  BORN,  I HAVE BEEN HOSPITALIZED WITH  IT, SENSE I`VE BEEN TAKING ENBREL,  AND I`VE HAD  IT 4 TIMES  ALREADY BUT PUT  IN THE HOSPITAL ON E  TIME WITH  IT,    BUT  YOU JUST HAVE TO BE CAREFUL WHO U ARE AROUND WHEN ARE IF THEY ARE SICK, TRY  NOT  TO BE,  I CARRY A SMALL BOTTLE  OF LYSOL AROUND WITH ME IN CASE  I HAVE  TO USE  A PUBLIC RESTROOM,  I CAN SPRAY THE TOLEIT SIT BEFORE I USE  IT,  PLUSE  I CARRY HAND SANITIZER WITH  ME, TO KEEP  MY HANDS  WASHED TO, GERM  FREE,    SO DIDEN KNOW  IF  U ARE AWARE,  BUT ENBREL  DOES  HELP ME AND HAS  BEEN WOUNDERS  FOR  ME,  IT  HAS  KEPT ME OUT OF  A WHEEL  CHAIR,        SOOO GOOD LUCK, AND HOPE  IT IS WORKING FOR  YOU,

    • Anonymous
      Anonymous
      Apr. 27, 2009

      i have been on enbrel for 3 to 4 years now,   the only thing to be aware of taking  it  is, if u are`t already,  is you can catch  a cold very easy, don`t be around no one  that  is  sick with  a cold or flu are has  a virus,  or  infection,  the enbrel does break down your ummune system, ...

      RHMLucky777

      Read More

      i have been on enbrel for 3 to 4 years now,   the only thing to be aware of taking  it  is, if u are`t already,  is you can catch  a cold very easy, don`t be around no one  that  is  sick with  a cold or flu are has  a virus,  or  infection,  the enbrel does break down your ummune system,  which will make  u  easy to catch stuff, plus  i have  had MRSA (MERCER STaFF INFECTION) WHICH U CAN CATCH ANY WHERE AT GROCERIE STORES, HOSPITALS, AND DOCTORS OFFICE, AND  IS  AIR  BORN,  I HAVE BEEN HOSPITALIZED WITH  IT, SENSE I`VE BEEN TAKING ENBREL,  AND I`VE HAD  IT 4 TIMES  ALREADY BUT PUT  IN THE HOSPITAL ON E  TIME WITH  IT,    BUT  YOU JUST HAVE TO BE CAREFUL WHO U ARE AROUND WHEN ARE IF THEY ARE SICK, TRY  NOT  TO BE,  I CARRY A SMALL BOTTLE  OF LYSOL AROUND WITH ME IN CASE  I HAVE  TO USE  A PUBLIC RESTROOM,  I CAN SPRAY THE TOLEIT SIT BEFORE I USE  IT,  PLUSE  I CARRY HAND SANITIZER WITH  ME, TO KEEP  MY HANDS  WASHED TO, GERM  FREE,    SO DIDEN KNOW  IF  U ARE AWARE,  BUT ENBREL  DOES  HELP ME AND HAS  BEEN WOUNDERS  FOR  ME,  IT  HAS  KEPT ME OUT OF  A WHEEL  CHAIR,        SOOO GOOD LUCK, AND HOPE  IT IS WORKING FOR  YOU,

  • bucky badger
    Aug. 22, 2008

    I have been on Enbrel for a few months and it has seem to help most of my symptoms.  I too was worried about the shots but I have to say I am use to the sure click shot and it doesn't bother me at all anymore to take the shot.  In my short time of use I have had no problems or complications from Enbrel yet.  My RA Doc is considering...

    RHMLucky777

    Read More

    I have been on Enbrel for a few months and it has seem to help most of my symptoms.  I too was worried about the shots but I have to say I am use to the sure click shot and it doesn't bother me at all anymore to take the shot.  In my short time of use I have had no problems or complications from Enbrel yet.  My RA Doc is considering switching to Humaria or Rhemicade (not sure of the spellings since it is all new to me) since my elbows are still really inflammed and painful.   

    • May
      May
      Aug. 24, 2008

      Thank you for sharing your experience. I haven't decided whether to take on Enbrel or not. I am still trying to read more on this. Two days ago I got body cortisone shot and felt the improvement. I'll say 70% better but my right knee may be 20%. I was told that the shot will last about 2 months and I will need to add some medicine to maintain the present condition....

      RHMLucky777

      Read More

      Thank you for sharing your experience. I haven't decided whether to take on Enbrel or not. I am still trying to read more on this. Two days ago I got body cortisone shot and felt the improvement. I'll say 70% better but my right knee may be 20%. I was told that the shot will last about 2 months and I will need to add some medicine to maintain the present condition. It looks like I have to try Enbrel in order to have a normal life.

      I wonder if anyone has tried Enbrel for half a year or longer, I would like to know how is your skin taking it. Does it get harden? Is the medicine hard to handle when your are traveling?

       

    • happymom
      Jul. 22, 2010

      I have psoriatic arthritis and have been on enbrel for 7 years.  I will not willingly stop taking it.  Within 48 hours of my first dose, the change was soooo dramatic.  I was amazed.  I was nearly disabled before, and now I can function normally.  I have some aches and pains off and on, but no big whoop.  I am so grateful this...

      RHMLucky777

      Read More

      I have psoriatic arthritis and have been on enbrel for 7 years.  I will not willingly stop taking it.  Within 48 hours of my first dose, the change was soooo dramatic.  I was amazed.  I was nearly disabled before, and now I can function normally.  I have some aches and pains off and on, but no big whoop.  I am so grateful this medication exists.  It has meant the world to me.