New RA drug Simponi

Julie Community Member June 08, 2009
  • I've tried them all; Embril, Humira, Remicaid, Orencia and they worked somewhat but not enough or for any length of time.  Last week I went to my Rhumi and he said that their was a new RA drug out, Samponi, and wanted to know if I wanted to try it. OMG>>> not more than 2 days later the imflammation went down dramaticly.  I stopped the 5mg of Prednizone that I was taking too.  I hope that it lasts through the month.  I'll keep you updated.  YEA.....

70 Comments
  • Brad
    Health Guide
    Jun. 09, 2009

    I so hope this keeps working for you! My dr mentioned it, but said the once a month dosing tied his hands! If it works for you I may UNTIE his hands! Good for you!

     

    Brad

    • Julie
      Jun. 09, 2009

      Thanks for the encouragement. Why are your Dr's hands tied? Is it insurance? I hope that you find something that works for you.  Life is so much better without pain.  Sending healing thoughts your way for a good day.

       

      Julie

    • Brad
      Health Guide
      Jun. 09, 2009

      He wanted a drug that he could change the dosing level and the length in between doses. We went with Humira instead. And, yes, I am still waiting on the ALL POWERFUL insurance company to bless me with an okay to get it!

  • garrison
    Mar. 26, 2011

    I was given 2 samples of simponi last Nov.,Dec 2010. After the first injection about 4 to 5 weeks I started feeling like a new person. Swelling went down, aches and pains started going away. After the 2nd injection for another month I just kept getting better. So much better I was ready to go out and swing a golf club which I had not been able to do for...

    RHMLucky777

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    I was given 2 samples of simponi last Nov.,Dec 2010. After the first injection about 4 to 5 weeks I started feeling like a new person. Swelling went down, aches and pains started going away. After the 2nd injection for another month I just kept getting better. So much better I was ready to go out and swing a golf club which I had not been able to do for over ten years. It was wonderful!!!

     

    However, my medicare will not approve a payment, even though I had to switch to Remicade 60 miles away every 8 weeks and they approve that. Go figure!

    I've seen the remicade billing and the is very close to being the same. It is doing the job that simponi did. I don't know how long it would have lasted but it was really great to have some relief. Remicade infusion is not doing the same.

     

    I also have been on methotrexate .8ml once a week for over 10 yrs through all the other treaments. Recently it was dropped to .4 ml because of a change in lab results concerning liver function.

     

    good luck with your results. RG 

  • Bill Isom
    Nov. 03, 2010

    Thank you Julie for your comments on Simponi. My 30 year old niece developed RA which showed symptions about three years ago. We finally got her to see an RA Doctor who started her on Methotrexate with no results in 4 months. Then she started Enbrel in combination with Methotrexate. So far, three weeks, she has not had any improvement. We know that it might...

    RHMLucky777

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    Thank you Julie for your comments on Simponi. My 30 year old niece developed RA which showed symptions about three years ago. We finally got her to see an RA Doctor who started her on Methotrexate with no results in 4 months. Then she started Enbrel in combination with Methotrexate. So far, three weeks, she has not had any improvement. We know that it might take Enbrel between 3-6 months to work. It is encouraging that Simponi has worked for you very quickly so we will talk to our RA Doctor next appointment about Simponi. I have been doing intensive research on RA and have found the following which might be of help to other persons with RA. Dr. Ralph J. Argen,MD FACP has used small dose Enbrel as a joint injection on about 1,ooo patients with good results. There have been other clinical studies on joint injections of a similar nature with gene therapy (see; "an inflamation-inducible adenoviral expression system for Local (joint) Treatment of the orthritic joint. Gene therapy 2004;11(7):581-590') and orthopedica gene therapy in 2008, Pub Med Central, Harvard Med School at www.arthritis-researcg.com. Also Univ of Amsterdam Academic Repository - J. Adriaansen; document/42383. Also of interest is a Pilot Study of Potassium Supplementation for Adult Patients with RA see info at http://clinicaltrials.gov/ct2/show/NCT00461448. There is also an interesting article by Charles Weber,MS "Rheumatoid Arthritis Treatment by Potassium". It is very important that any RA patient should work with a qualified RA doctor in considering any alternatives to current accepted protocal medication because RA is a very complicated issue and one should NOT self-treat. There are open minded RA doctors that will work with you. Nutrition is very important but again, RA is much different than Osteo because it involves the immune system so you don't want to do anything without discussing with your doctor so you will not do anything to complicate the issue. Remember nutrition, including even vitimin supplementation, must be Balanced. For example, probotics might be helpful but on a limited basis because over use of probotics will stimulate lymph T-cells.

  • Jim
    Jim
    Jul. 26, 2010

    Look here - www.roadback.org

     

    You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands...

    RHMLucky777

    Read More

    Look here - www.roadback.org

     

    You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.*

  • pam
    pam
    Jun. 27, 2010

    i am about to start simponi this week hope it does all that they say im running out of options dont want to be taking any more painkillers. so glad our government pays for these drugs

    • Laura
      Jun. 27, 2010

      I received my first Simponi injection at the beginning of June 2010.  No side effects to date and my energy level has increased - this alone is worth its weight in gold!

      There has been a slight improvement in joint pain and hopefully this will continue in a positive direction.  Am able to resume 'gentle' exercise which is...

      RHMLucky777

      Read More

      I received my first Simponi injection at the beginning of June 2010.  No side effects to date and my energy level has increased - this alone is worth its weight in gold!

      There has been a slight improvement in joint pain and hopefully this will continue in a positive direction.  Am able to resume 'gentle' exercise which is major in trying to head off this disease. 

       

      Trying to stay positive!

       

      Laura      

    • Julie
      Jun. 27, 2010

      YEA......I love to hear when a fellow sufferer is getting better.  Best to you.

       

      Julie

    • Julie
      Jun. 27, 2010

      Yea.  I'm happy that you found something that is working for you.

       

      Happy pain free days.

       

      Julie

    • Brian L
      Jul. 28, 2010

      I have rheumatoid arthritis and have been taking Simponi for 3 months now.  I had so much pain in my shoulders at night that I could not sleep, even with all the narcotic painkillers I tried.  The first night on Simponi and every night since I have slept without any pain.  My wrists, hands, and knees are also greatly improved.  The only...

      RHMLucky777

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      I have rheumatoid arthritis and have been taking Simponi for 3 months now.  I had so much pain in my shoulders at night that I could not sleep, even with all the narcotic painkillers I tried.  The first night on Simponi and every night since I have slept without any pain.  My wrists, hands, and knees are also greatly improved.  The only reaction I have had is slightly elevated blood pressure, but an extra 5mg of Ramipril took care of that.  I still can't work, but at least I now have an almost pain free life, with very little stiffness.  I have reduced my Tylenol 3's from 150 per month to about 30 per month.  To me Simponi has been a miracle!!  I also take 20mg Arava every other day and 75mg SR Diclofenac and 400mg Plaquenil daily.  I have not tried any other biologic as my rheumy suggested Simponi, and she has never let me down.

    • Julie
      Jul. 29, 2010

      Brian,

       

      I'm so happy that Simponi is working for you.  It is am amazing feeling to be pain free.  Almost a "high"....

      I am no longer on Simponi as it did not work well for me.  I am trying Rutuxin next week.  I'm a bit worried about it though as it is a very powerful drug but I've heard that it has helped many,like me, eho've...

      RHMLucky777

      Read More

      Brian,

       

      I'm so happy that Simponi is working for you.  It is am amazing feeling to be pain free.  Almost a "high"....

      I am no longer on Simponi as it did not work well for me.  I am trying Rutuxin next week.  I'm a bit worried about it though as it is a very powerful drug but I've heard that it has helped many,like me, eho've not responded to other RA Biologics.

       

      Be well.  Have a happy paon free day ").

      Julie 

  • Joanne
    Jun. 15, 2010

    I am so happy to here that it is working well for you.  I should be going on Samponi this week.  Waiting to here from my doctor.  I hope it works well for me too.  Tired of the inflamation and pain I have been going through for about a year now.  Good luck.  Joanne

  • ali.shae
    Apr. 30, 2010

    after you did your first injection of Symponi how long did it take to feel relief?  My father started the injections on 5 days ago and so far feels no relief.  He's tried pretty much everything else out there, remicade infusions etc.  I just want him to feel some relief so was curious if he may expect some relief soon??  Thanks!

    • Julie
      Apr. 30, 2010

      HI,

       

      Unfortunatly, I did not get much relief from Simponi.  I switched to another drug, Actimera.  I've had 1 infusion so far with no relief.  I've tried everything and am so discouraged.  I had the worst flare up in years the other day.  I had to up my prednisone just to find some relief to swelling and pain.  I go back...

      RHMLucky777

      Read More

      HI,

       

      Unfortunatly, I did not get much relief from Simponi.  I switched to another drug, Actimera.  I've had 1 infusion so far with no relief.  I've tried everything and am so discouraged.  I had the worst flare up in years the other day.  I had to up my prednisone just to find some relief to swelling and pain.  I go back to my dr Wed and will have my 2nd infusion.  I hope that it kicks in soon.

       

      I hope that Simponi starts working for your dad.  I think that each person is different in how they react to a drug.

       

      Julie

    • BH
      BH
      May. 11, 2010

      Hi Julie,

       

      Just found your site.  Sorry you have to suffer with RA.  Hope you find a measure of relief anyway you can, however I fear prescription medications have the potential for doing alot of damage to our bodies. Predisone being particularly hard on one.  

      I am in my early 50's and have lived with chronic knee pain from injuries and...

      RHMLucky777

      Read More

      Hi Julie,

       

      Just found your site.  Sorry you have to suffer with RA.  Hope you find a measure of relief anyway you can, however I fear prescription medications have the potential for doing alot of damage to our bodies. Predisone being particularly hard on one.  

      I am in my early 50's and have lived with chronic knee pain from injuries and over use,..hundreds of parachute jumps (it's the kanding not the jump ha ha), carrying heavy loads over rough terrain plus 30 years of distance running.  

      Although I tried about every OTC solution possible, including Glucosamine, Chondroitin, HA, etc., I never had any relief until I took a pharmacuetical grade Glucosamine supplement and added pharmacuetical grade Omega 3 Fatty Acid to my diet.  

      Both human and equine scientists tell me that they can prove Glucosamine helps repir and even build joint cartilidge.  They think Chondroitin and HA may help but can't prove it.  

      The Omega 3 Fatty Acids help counter inflammation, which can be a big cause of pain, due to an unbalanced Omega 6 to Omega 3 ratio in the Western diet where our Omega 6 to Omega 3 can be as much as 40:1 compare to the accepted recommended ratio of 2:1.    

      Much like you, I created a site to help people who have chronic knee and other joint pain - not necessarily RA, but from degradation from Father Time. 

      please visit:  http://www.myachingknees.com to see if there is any information that may be of use to you. 

      regards,

      BH

       

       

  • Anonymous
    Stacey
    Jun. 29, 2009

    LaughingI just started Simponi. (I have been trying new RA meds for over 6 years. I have tried steroids, several NSAIDS, Methotrexate injections, Humira, Enbrel, Remicade, Orencia, Kineret, Rituxan and now Simponi).

    It has been a week since my injection of Simponi and I have not noticed any side effects. I have read that even of you have failed other TNF blockers Simponi...

    RHMLucky777

    Read More

    LaughingI just started Simponi. (I have been trying new RA meds for over 6 years. I have tried steroids, several NSAIDS, Methotrexate injections, Humira, Enbrel, Remicade, Orencia, Kineret, Rituxan and now Simponi).

    It has been a week since my injection of Simponi and I have not noticed any side effects. I have read that even of you have failed other TNF blockers Simponi still may be effective. This gives me hope as no other drug has given me results that would justify staying on the drug -OR- I have had dangerous side effects.

     

    So, Simponi so far, is promising. I hope it works, a once a month injection is much better than many of the other options.

     

    (I even gota prescription assistance card that will cover my co-pay for 6 months and help with the co-pay for another 6 months. This will definitely be long enough to decide if Simponi is right for me. Oh, BTW, the first dose was free. Simponi was sent to my Dr office for me to try the first injection free. So if you need help paying for your Simponi, tell your Dr.)

     

    • Anonymous
      julieg0826@yaho...
      Jun. 30, 2009

      Hi Stacey,

       

      We sound like RA sisters going through the same medication rollercoaster.  I'm hopeful that Simponi will be the final one that I have to try.  I had my 2nd injection today.  I did have some awful flairs for the past week and was just waiting for today. I cheated and took it 2 days early.  I was in too much pain last night. ...

      RHMLucky777

      Read More

      Hi Stacey,

       

      We sound like RA sisters going through the same medication rollercoaster.  I'm hopeful that Simponi will be the final one that I have to try.  I had my 2nd injection today.  I did have some awful flairs for the past week and was just waiting for today. I cheated and took it 2 days early.  I was in too much pain last night.  I sucome to taking some pain meds and 10mg of prednisone and it helped me make it through the day.  I'm hoping that this is just a bridge. Boy, the world is such a different place without pain.

       

      Best to you too.  It is nice to talk to someone who understands.Smile

       

      Julie

    • Stacey93
      Jul. 10, 2009

      I was told to inject every 28 days. So it is ok to inject 2 days shy of a full month. Even though all pamphlets say once a month dosing, my nurse says it lasts 28 days.

      So far I do not see any side effects or improvement but I have just had one dose. I inject dose #2 around 7/21.

      I am always willing to talk to anyone and be of help to anyone.

      I hope you have...

      RHMLucky777

      Read More

      I was told to inject every 28 days. So it is ok to inject 2 days shy of a full month. Even though all pamphlets say once a month dosing, my nurse says it lasts 28 days.

      So far I do not see any side effects or improvement but I have just had one dose. I inject dose #2 around 7/21.

      I am always willing to talk to anyone and be of help to anyone.

      I hope you have a great weekend!

    • Anonymous
      Liz
      Feb. 11, 2010

      Hi, my name is Liz and I too have been on the RA rollercoaster for many years. Enbrel worked for me so well, my doctor was convinced that I didn't have RA afterall. After going off of it for 4 months and MAJOR flairups, I went back on Enbrel.. it didn't work fo rme the second time.. then Humara.. it did nothing.. I had my first shot of Symponi.. it worked almost...

      RHMLucky777

      Read More

      Hi, my name is Liz and I too have been on the RA rollercoaster for many years. Enbrel worked for me so well, my doctor was convinced that I didn't have RA afterall. After going off of it for 4 months and MAJOR flairups, I went back on Enbrel.. it didn't work fo rme the second time.. then Humara.. it did nothing.. I had my first shot of Symponi.. it worked almost immediately.. so I am hoping it stays that way. It makes a huge difference to be able to talk to others that understand the everyday pain and fatigue.. it is hard to be a happy mommy when you hurt so. Thanks for letting me talk... It helps.

    • Julie
      Feb. 12, 2010

      Liz,

       

      I know, it is frustrating to not find a medication that works well... Especially when the drug commercials say that all of these drugs stop the progression of joint dammage. Not for me so far. I've only gotten worse.

       

      I wonder why some of us are SO LUCKY? 

       

      I hope that you find something that works for you soon.

       

      Take care...

      RHMLucky777

      Read More

      Liz,

       

      I know, it is frustrating to not find a medication that works well... Especially when the drug commercials say that all of these drugs stop the progression of joint dammage. Not for me so far. I've only gotten worse.

       

      I wonder why some of us are SO LUCKY? 

       

      I hope that you find something that works for you soon.

       

      Take care and good health.

       

      Julie

       

       

    • Marge
      Aug. 01, 2009

      I too, have been trying RA meds for 6 years (Methotrexate, Arava, Plaquenil, Humira, Enbrel) without improvement. I took my first Simponi injections today and was really happy with how pain-free the injection was and so far no local reaction (I found the Humira to be terribly painful and had horrible rashes and itching with Enbrel). I am so hoping this will...

      RHMLucky777

      Read More

      I too, have been trying RA meds for 6 years (Methotrexate, Arava, Plaquenil, Humira, Enbrel) without improvement. I took my first Simponi injections today and was really happy with how pain-free the injection was and so far no local reaction (I found the Humira to be terribly painful and had horrible rashes and itching with Enbrel). I am so hoping this will be the "miracle drug."  Good luck to you and all who read with site...I hope Simponi works for all of us!    Marge

    • Julie
      Aug. 01, 2009

      Hi Marge,

       

      Thanks for the encouragement.  I too was surprised how painfree the injection was and I too did not get the sight reaction as I did with others.

       

      I've had 2 injections.  I have found some relief but still have occasional flare ups.  I had to be on antibiotics  for a UTI and had a flare the whole time and had to take...

      RHMLucky777

      Read More

      Hi Marge,

       

      Thanks for the encouragement.  I too was surprised how painfree the injection was and I too did not get the sight reaction as I did with others.

       

      I've had 2 injections.  I have found some relief but still have occasional flare ups.  I had to be on antibiotics  for a UTI and had a flare the whole time and had to take 5mg of prednisone to get by.  I'm hoping that with time Simponi will work wonders for both of us.

       

      I wonder why we are so "lucky" to have a body that does not respond to most of the RA drugs.  My miracle drug is Prednisone. It works best but I have to worry a bit about the long term effects but for now the benefits of a pain free day out weigh the longterm risks.  I'm on a very low dose when I have to take it.

       

      Be well and let me know how you are doing.  Happy summer.

       

      Julie

    • Marge
      Aug. 01, 2009

      Prednisone is my wonder drug, too.  Small doses help me so much.....it's too bad the long term side effects are so bad.....I would love to live on that stuff!!!! I hope you're feeling better soon.    Marge

      my e-mail address is collielady@earthlink.net if you would like to keep me updated on your progress.

    • Julie
      Aug. 01, 2009

      I tried to e-mail you but it did not work??? We can keep in touch thru this site, I guess. 

       

      Yea, Predinsone is one of those drugs that is cheep and works wonders.  If the doctors had not told me of the side effects, I would never know.  It is a life saver to me on many days too.

       

      Be well and keep in touch.

       

      Julie

    • Stacey93
      Aug. 12, 2009

      SmileHello Julie and Marge. I am due for my 3rd Simponi injection next Tuesday.

      So far still no reall side effects and no huge changes, but I think flares are not as bad. I do think I feel tired and weak for a few days after the injection, but if the Simponi helps that is a small price to pay considering the dire side effects I have had with other drugs.

      I look...

      RHMLucky777

      Read More

      SmileHello Julie and Marge. I am due for my 3rd Simponi injection next Tuesday.

      So far still no reall side effects and no huge changes, but I think flares are not as bad. I do think I feel tired and weak for a few days after the injection, but if the Simponi helps that is a small price to pay considering the dire side effects I have had with other drugs.

      I look forward to sharing my sotor with both of you and wish you the best!

      Love and many blessings!

      Stacey

    • Julie
      Aug. 12, 2009

      Hi Stacey,  I'm glad that Simponi has worked somewhat for you.  I had great hopes but have had 3 injectons with little or no relief.  Without that bitter little prednisone pill I think that I would not be able to get out bed. It's funny how the cheapest drug works the best.  I return to my Dr tomorrow to see if it just is...

      RHMLucky777

      Read More

      Hi Stacey,  I'm glad that Simponi has worked somewhat for you.  I had great hopes but have had 3 injectons with little or no relief.  Without that bitter little prednisone pill I think that I would not be able to get out bed. It's funny how the cheapest drug works the best.  I return to my Dr tomorrow to see if it just is going to take a little longer for Simponi to work.  I'm trying to keep positive. I'm just worried about how the RA has damaged my elbows and limits my range of motion. I'll let you all know if things change and Simponi starts working.  I wish you only good health.

    • Anonymous
      Anonymous
      Jan. 13, 2010

      Dear Fellow RA Sufferers,

       

      I just noticed the  tv. ad on Simponi. I plan to follow it's effects with keen interest. I am presently on a

      combo of 20 mg. of Arava and 50mg. of Enbrel. and luckily it is working very well with little if any side effects. The one recommendation for all is to try and exercise daily to whatever extent you can.

       

      Wishing...

      RHMLucky777

      Read More

      Dear Fellow RA Sufferers,

       

      I just noticed the  tv. ad on Simponi. I plan to follow it's effects with keen interest. I am presently on a

      combo of 20 mg. of Arava and 50mg. of Enbrel. and luckily it is working very well with little if any side effects. The one recommendation for all is to try and exercise daily to whatever extent you can.

       

      Wishing you all a pain free life!

      Marsha

    • Julie
      Jan. 13, 2010

      I stopped Simponi as it was not working and I'm now trying Cimzia...  I'm a bit discouraged as no TNF's have worked well for me.  Anyone else experiencing this?  If so, what has worked for you?

    • Anonymous
      Susan
      Feb. 15, 2010

      Hi Julie, I never heard about the drug Prednisone your miracle drug... Can you tell me something about it. I see my doctor on Wednesday and if its such a miracle a could use as much as I can get. Does it have any side affects.Thanks for you help Susan

    • Julie
      Feb. 15, 2010

      Prednisone is a steroid med that has been around for decades.  Most people and doctors have a love/hate relationship with it.  Their are side effect.  For me, I worry about bone loss.  It works the best for me for now.  I take a very low dose, 5mg a day.  It takes away a lot of my inflamation.  Without it, I would have a heck...

      RHMLucky777

      Read More

      Prednisone is a steroid med that has been around for decades.  Most people and doctors have a love/hate relationship with it.  Their are side effect.  For me, I worry about bone loss.  It works the best for me for now.  I take a very low dose, 5mg a day.  It takes away a lot of my inflamation.  Without it, I would have a heck of a time walking.

       

      You can look up this medication on the web to get more information.

       

      Be well.

       

      Julie

    • Anonymous
      Susan
      Feb. 16, 2010

      Hi Julie Thank you for your help I will look it up and speak to my doctor hopefuly he has a love for it.. Again Thank you

    • Anonymous
      HARDWORKERWITHR...
      Jun. 27, 2010

      Thank you for your accurate feedback esp. about all the others you tried. Please, Please let us know how you continue on the drug. A new RA survivor one day at a time. I find that even though I work hard. Don't leave work to see my doctor all the time, no one cares or understand the fatigue and pain...So you are a blessing.

  • Anonymous
    gail
    Jun. 11, 2009

    Julie - good for you.  I'm a newbie at RA.  I've tried methotraxate, plaqunil, arava, all made me sick.  Now I'm on the sulfa drug - no success.  Since Easter I have been in the hospital 3 times with pneumonia - so along with being tired from RA - the pneumonia makes you tired also - it's almost like I can't win for losing.  I...

    RHMLucky777

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    Julie - good for you.  I'm a newbie at RA.  I've tried methotraxate, plaqunil, arava, all made me sick.  Now I'm on the sulfa drug - no success.  Since Easter I have been in the hospital 3 times with pneumonia - so along with being tired from RA - the pneumonia makes you tired also - it's almost like I can't win for losing.  I wanted to ask you about insurance and the infused drugs - did they payj?  I realize that some insurance companies pay until you reach the donut hole and then the subscriber pays and then they pick up again.  Is this how your insurance works?  is Samponi and injectable or a pill?

    t

    • Anonymous
      julie
      Jun. 11, 2009

      I'm sorry that you've had to go thru so much.  Some of the RA meds have a contra indication for those with lung issues so make sure that your Rheumatologist knows that you had pneumonia.

       

      My insurance does cover Simponi. I have to pay a $40 co-pay. Their are assistance programs thru the drug companies for most of the costly meds that a lot of people...

      RHMLucky777

      Read More

      I'm sorry that you've had to go thru so much.  Some of the RA meds have a contra indication for those with lung issues so make sure that your Rheumatologist knows that you had pneumonia.

       

      My insurance does cover Simponi. I have to pay a $40 co-pay. Their are assistance programs thru the drug companies for most of the costly meds that a lot of people don't know about. Ask at your Rheumatologists office. They can help contact the drug companies for you.

       

       

      Simponi comes in a prefilled injectable syringe.  It is easy to use and a once a month injection.  I like that aspect too as I like to travel and don't want to worry about carrying it with me as it has to be refridgerated.  So far, it has worked fabulously.  I can't believe how much better I feel. No side effects, so far.

       

      I'm sending healing thoughts your way.  I hope that you get better soon.

       

      Julie

       

       

       

    • Anonymous
      gail
      Jun. 15, 2009

      Thanks for the info.  My rheumatolgist is aware of my pneumonia and as soon as I am well enough she will most likely start me on one of the biologics.  Thanks for the info on Simponi - it sounds like something I would like to try.  I'll let you know.

       

      gail

    • Julie
      Aug. 01, 2009

      Sorry that I had not responded earlier.  I missed your questi0on.  Simponi is a 1 a month injectiion.. My insurance pays all but the $40 copay but their is an assistance plan thru the manufacture that picks up the $40 and so it is 100% covered.

       

      Every insurance is different. You may have to have tried and failed other RA meds before they pay. ...

      RHMLucky777

      Read More

      Sorry that I had not responded earlier.  I missed your questi0on.  Simponi is a 1 a month injectiion.. My insurance pays all but the $40 copay but their is an assistance plan thru the manufacture that picks up the $40 and so it is 100% covered.

       

      Every insurance is different. You may have to have tried and failed other RA meds before they pay.  Call them and see.

       

      I sure hope that you are all well now and no more pheumonia.  I know that some of the RA drugs are not to be taken with some lung problems.

       

      Be well.

       

      Julie

       

       

    • Anonymous
      doug
      Nov. 23, 2009

      I have been taking SIMPONI for the last 6 months. First month was wonderfull, second - not bad, but on the 3rd month it's lasted only a 2.5 weeks. The medication cost $1,800 per month. My co-payment is $350.

  • Kelly Young
    Jun. 09, 2009

    Awesome Julie!

    Watching with great interest.

    Kelly  Cool

  • DK
    DK
    Jun. 09, 2009

    Hi Julie, I, too, just tried Simponi.  I have been on methotrexate, plaquenil, sualfasalazine, humira, enbrel, prednisone, and either had liver problems, or was allergic to each one of them.  Currently I've been on Arava for about 6 months and just was started on Simponi as well.  I'm keeing my fingers crossed that I don't break out with it. ...

    RHMLucky777

    Read More

    Hi Julie, I, too, just tried Simponi.  I have been on methotrexate, plaquenil, sualfasalazine, humira, enbrel, prednisone, and either had liver problems, or was allergic to each one of them.  Currently I've been on Arava for about 6 months and just was started on Simponi as well.  I'm keeing my fingers crossed that I don't break out with it.  I thought it hurt a lot LESS than the Humira or Enbrel ever did- lot less stinging.  It's been almost 2 weeks since my first shot and so far so good. My doc gave me a sample so I didn't have to go through the insurance hassel just in case it didn't work.  I would be very happy to hear how you progress.  How long have you been diagnosed?  I was diagnosed about 3 years ago and am still messing around with meds.  Guess it takes a long time.  I will just be thrilled if the fatigue even lessens.  It's almost worse than the pain and stiffness.  I sure wish you all the luck in the world and let me know how you are doing.   Donna Wink

    • Julie
      Jun. 09, 2009

      Hi Donna, I'm sorry for you troubles with the side effects. I've was diagnosed in 1991. I know that fatigue.  Pain is not our friend.  It takes the wind out of you.  I hope that you find something that helps you.

       

      I've also found out that I am Gluten Intollerant and have allergies to eggs.  I've noticed that since I've elliminated...

      RHMLucky777

      Read More

      Hi Donna, I'm sorry for you troubles with the side effects. I've was diagnosed in 1991. I know that fatigue.  Pain is not our friend.  It takes the wind out of you.  I hope that you find something that helps you.

       

      I've also found out that I am Gluten Intollerant and have allergies to eggs.  I've noticed that since I've elliminated them from my diet that if I ingest either that I have a flare up.  You may want to get tested for food allergies too as they create an auto immune response too.

       

      Be well. Keep positive.

       

      Julie

    • michele
      Mar. 05, 2010

      I have used simponi now for 2 months, have never felted BETTER. My insurance company will not pay for it so I have to stop. They are making me try other meds before they will approve it for me. Shame on them, money means more then health!

      Good luck to everyone who gets to try it. michele

       

    • Julie
      Mar. 05, 2010

      Doesn't it make you sick...litterly, that you have to try and fail meds over and over again before the insurance compamy allows you to use one that you know works. 

       

      Maybe call the drug company directly and see if they have a program for people that cannot afford the drug,

       

      Best to you.

       

      Julie

    • Donna T.
      Jun. 01, 2010

      I have been on Simponi for amout 4 months now and methotraxate 7 pills a week since december. I have been able to drop my predinsome to 10mg a day from 40mg and am have a lot less pain. If it is your insurance company, you should sign up for the financial assistace at www.simponi.com you get it for 6 months free and 6 months at $5.00, this will...

      RHMLucky777

      Read More

      I have been on Simponi for amout 4 months now and methotraxate 7 pills a week since december. I have been able to drop my predinsome to 10mg a day from 40mg and am have a lot less pain. If it is your insurance company, you should sign up for the financial assistace at www.simponi.com you get it for 6 months free and 6 months at $5.00, this will get ou through the 1st year and you can re-apply at that time for additional assistance. I have tried embrel and had reactions to it and simponi is my last hope for a TNF blocker before we start IV therapy (not a fan of).

    • Diane
      Aug. 19, 2010

      I was bless by Johnsons and Johnsons, the approve me for a year worth of simponi by using the MAP program. I had my first shot yesterday and for me

      so far has not done a thing. Do agree there is less sting the Embrel. But if it

      doesn't work then whats the point. Swollen in Indiana

  • Anonymous
    cbell
    Jun. 08, 2009

    Please do let us know how it works for you!  I have tried Enbrel and Humira with no change at all.  I get my fifth infusion of Orencia on Wed. and I can't see any change yet.  I take 15 mg of prednisone, 9 pills of methotrexate per week plus other drugs.  I am sick and tired of trying things that make no changed at all and it takes so long...

    RHMLucky777

    Read More

    Please do let us know how it works for you!  I have tried Enbrel and Humira with no change at all.  I get my fifth infusion of Orencia on Wed. and I can't see any change yet.  I take 15 mg of prednisone, 9 pills of methotrexate per week plus other drugs.  I am sick and tired of trying things that make no changed at all and it takes so long to find out it isn't going to work.  I am so glad that something is working for you!

    Keep us informed.

    Cindy

    • Julie
      Jun. 09, 2009

      So far, so good.  I'll keep my fingers crossed...I still can.  I hope that you find something that works well for you.  It is wonderful not to be in so much pain. The pain and swelling/stiffness is not all gone but I'd say 70% better.  I'll take it.  I hope that it does not ware off before the 30 days.

       

      Be well and keep positive. ...

      RHMLucky777

      Read More

      So far, so good.  I'll keep my fingers crossed...I still can.  I hope that you find something that works well for you.  It is wonderful not to be in so much pain. The pain and swelling/stiffness is not all gone but I'd say 70% better.  I'll take it.  I hope that it does not ware off before the 30 days.

       

      Be well and keep positive.  Wishing you a painfree happy day.

       

      Julie

    • Anonymous
      Anonymous
      Dec. 24, 2009

      If you could find a remedy for the pain that didn't have a list of side effects a mile long, would you be interested?  A very good friend of mine is now drug and pain free most days....seriously.  email me if this interests you. cherylwrites at gmail dot come.

    • Anonymous
      luig
      Jan. 11, 2010

      send me the info please

    • Anonymous
      Anonymous
      Jan. 11, 2010

      Luig, the website is itsinthejuice.vemma.com - based in mangosteen, a known natural anti-inflammatory that is just amazing. You can email me too, happy to answer any questions you have. 

    • Anonymous
      Susan
      Feb. 15, 2010

      Hi Julie, I just started taking samponi I had my first shot on tuesday, I don'tknow if it has made a difference.. My and problem is did you have any side affects, that night I got really sick and had a really bad headache for two days and also on my right side my ribs hurt so bad it feels like someone broke my ribs.  I can't even breath, or sneeze.. Did...

      RHMLucky777

      Read More

      Hi Julie, I just started taking samponi I had my first shot on tuesday, I don'tknow if it has made a difference.. My and problem is did you have any side affects, that night I got really sick and had a really bad headache for two days and also on my right side my ribs hurt so bad it feels like someone broke my ribs.  I can't even breath, or sneeze.. Did this happen to you??? I hurt so bad please let me know if this happened to you Thank you Susan

    • Julie
      Mar. 05, 2010

      Susan,

       

      I did not have these side effects. Sorry to hear your troubles. I hope that you contacted your dr and can find answers to your problems and find a med that works.

       

      Unfortunatly, Simponi did not work well for me. I then tried Cimzia, no real help.  I am going to be trying the latest RA biologic in a few weeks. I am on the 4 month rollercoaster....

      RHMLucky777

      Read More

      Susan,

       

      I did not have these side effects. Sorry to hear your troubles. I hope that you contacted your dr and can find answers to your problems and find a med that works.

       

      Unfortunatly, Simponi did not work well for me. I then tried Cimzia, no real help.  I am going to be trying the latest RA biologic in a few weeks. I am on the 4 month rollercoaster.

       

      Won't it be wonderful to find something that works.

       

      Best of health to you.

       

      Julie

    • Susan
      Mar. 30, 2010

      Hey Jolie, Thanks for your help the doctors said they didn't believe that it was from Simponi and they told me to go back on my meds.  So I toke another shot and about two weeks later I am back with really bad pain but this time on my left side not my right I didn't get sick or have the headache but the pain is so bad I can't breath, cough or even laugh...

      RHMLucky777

      Read More

      Hey Jolie, Thanks for your help the doctors said they didn't believe that it was from Simponi and they told me to go back on my meds.  So I toke another shot and about two weeks later I am back with really bad pain but this time on my left side not my right I didn't get sick or have the headache but the pain is so bad I can't breath, cough or even laugh with out it hurting so bad, so the doctor doesn't understand what is going on they still don't think its the Simponi but I can't understand what it could be.. The pain is so bad and again I am missing work cause its just to hard to stand up and left anything I just can't figure out what is going on the Simponi doesn't seem to make me feel any better I will never use it agian the only problem is what kind of damage has it done to me

    • Julie
      Mar. 30, 2010

      Susan,

       

      I'm sorry to hear that you are not well.  You know your body best and have to make the choice, sometimes over your doctor, as to when to stop a med.

       

      I hope that you find something that works soon.

       

      Julie

    • Susan
      Jun. 27, 2010

      Hi Julie, I just thought I would give you an up date on what is happening with the pain in my ribs after using Simponi, the RA doc finally ordered a full body bone scan to see what was going on with that stuff they put in you to show every thing up better well I had two broken ribs one on the right side and one on the left side they don't understand were it...

      RHMLucky777

      Read More

      Hi Julie, I just thought I would give you an up date on what is happening with the pain in my ribs after using Simponi, the RA doc finally ordered a full body bone scan to see what was going on with that stuff they put in you to show every thing up better well I had two broken ribs one on the right side and one on the left side they don't understand were it came from but I did nothing to cause it except the shot so now it was reported to the FDA and I don't know where they are going to go from there when I spoke to the simponi company they want me to send them a copy of my medical records I haven't yet cause I don't know why they would need that my doctor still doesn't think its from the simponi but what else could it be it all started right after I used the first shop

    • Julie
      Jun. 27, 2010

      Have you been on Prednisone?  Have you had a bone scan reciently?  I know that Prednisone thins your bones.  Ask your doctor.  See if your bones are thin if just turning wrong would have done it.  I don't know.

       

      I hope that you heal soon.

       

      Take care,

       

      Julie

       

    • Susan
      Jun. 28, 2010

      Hi Julie, No I haven't been on that medication but another lady had responded to me also a few weeks ago and said she was having the same pain in her ribs after using Simponi and her doctor told her they could do a full body scan I told her to but I haven't gotten anything back yet the one thing that seems the same also between us is we both have Osteoporosis,...

      RHMLucky777

      Read More

      Hi Julie, No I haven't been on that medication but another lady had responded to me also a few weeks ago and said she was having the same pain in her ribs after using Simponi and her doctor told her they could do a full body scan I told her to but I haven't gotten anything back yet the one thing that seems the same also between us is we both have Osteoporosis, now I don't know maybe if you have both RA and Osteoporosis the medacation might good for one but cause problems with the other, my doctor toke blood after the test result and found out that my vitamin D level was well below what your to have in your body my was 8mg when it has to be between 20 and 100, any ideas Susan

    • Julie
      Jun. 28, 2010

      I was thinking the same thing about Osteoperosis.  I worry about that with me as my bone scans shows my bones getting worse.  Prednisone is the only me that takes away my daily pain and swelling so to me it is a trade of with quality of life. 

       

      My Vit D was extremely low a few years ago too.  I just repeated my levels a few weeks ago...

      RHMLucky777

      Read More

      I was thinking the same thing about Osteoperosis.  I worry about that with me as my bone scans shows my bones getting worse.  Prednisone is the only me that takes away my daily pain and swelling so to me it is a trade of with quality of life. 

       

      My Vit D was extremely low a few years ago too.  I just repeated my levels a few weeks ago and it was still only ata 30.  I've been taking 1000IU a day and I guess I need to take more.

       

      I don't really have anymore ideas.  Thanks for the info though.  Be well.

       

      Julie

    • Angie
      Jun. 18, 2012

      Simponi did not work for me, either. It made me worse! I had  flare ups on my right shoulder, which I never had before. The pain was so intense and mobility was so limited.  Now I have torn tendons, bursitis, torn bicep. I feel Simponi gave me the flare ups and tore my tendons etc. I am no longer on it back to Humira and much better.

    • Anonymous
      fishermanpat
      Aug. 08, 2010

      Did your doctor send you in for xrays for possible plurisy?  That's an inflamation of the lining around the lung.  I suffered from that along with pnuemonia after my first infusion of Remicaid.  Just a thought.

    • Julie
      Aug. 08, 2010

      Thanks for the information.  My lungs are great....Thanks goodness.  I am not on Remicaid anylonger.  I had my first infusion of Ratuxan last week.  I had a pretty sizable flare yesterday evening.  Disappointing "(...   I have my secon infusion in a few weeks.  Hopefully it will start working very soon.  Be well.....

      RHMLucky777

      Read More

      Thanks for the information.  My lungs are great....Thanks goodness.  I am not on Remicaid anylonger.  I had my first infusion of Ratuxan last week.  I had a pretty sizable flare yesterday evening.  Disappointing "(...   I have my secon infusion in a few weeks.  Hopefully it will start working very soon.  Be well..

       

      Julie

    • Julie
      Jun. 27, 2010

      I'm sorry to hear about the side effect that you had from Simponi.  I did not notice any side effects.  I just did not feel much relief from it. 

       

      It is funny how we all react differently.  Maybe one day they will do a blood /gene test that will show what works best.  Or, better yet, a cure.

       

      Let's hope.  Be well.

       ...

      RHMLucky777

      Read More

      I'm sorry to hear about the side effect that you had from Simponi.  I did not notice any side effects.  I just did not feel much relief from it. 

       

      It is funny how we all react differently.  Maybe one day they will do a blood /gene test that will show what works best.  Or, better yet, a cure.

       

      Let's hope.  Be well.

       

      Julie

    • Diane
      Aug. 19, 2010

      Just read this post, so I see the somponi did nothing for you. does nothing for me either. sigh.

    • Diane
      Aug. 19, 2010

      Hi Julie,

      You said simpomi (sp) work for you. I had my first shot yesterday and I am my swallon today then I was yesterday. How is it still working for you?

       

      Wondering if this is the answer.

    • Julie
      Aug. 19, 2010

      Hi,

       

      I am no longer on Simponi.  I had my 2nd infusion of Rituxan 2 days ago.  I had a bad flare 4 days after my 1st then just settled into my usual nightly swollen joints until I took my prednizone.  I am told by my MD that it can take 2 months to start really working.  I'm litterly crossing my fingers as I don't know what else to...

      RHMLucky777

      Read More

      Hi,

       

      I am no longer on Simponi.  I had my 2nd infusion of Rituxan 2 days ago.  I had a bad flare 4 days after my 1st then just settled into my usual nightly swollen joints until I took my prednizone.  I am told by my MD that it can take 2 months to start really working.  I'm litterly crossing my fingers as I don't know what else to try after this.

       

      Best to you.

       

      Julie

       

    • Anonymous
      Vickie
      Jun. 08, 2010

      You seem to be on the same regiment as my husband. He takes 8 methotrexate a week plus diclofan. He is in so much pain right now. He also takes 10 mg of prednasone. He can't take anymore because he is also a diabetic. We are going to his rheumatologist today. Hope he finds something.

    • Anonymous
      HARDWORKERRAPAIN
      Jun. 27, 2010

      First I have RA. My sister is on Methotrexate. I do not wish to take because of all the side effects. I like to work out daily, but sometimes the pain the next day is do bad its not worth it. I hope this new drug simponi works with few side effects.

       

      1. What I find most helpful is when people provide accurate feedback. Not feelings. But objective facts,...

      RHMLucky777

      Read More

      First I have RA. My sister is on Methotrexate. I do not wish to take because of all the side effects. I like to work out daily, but sometimes the pain the next day is do bad its not worth it. I hope this new drug simponi works with few side effects.

       

      1. What I find most helpful is when people provide accurate feedback. Not feelings. But objective facts, i.e. how long they been on it. How many mgs. What side effects did they notice vrs the relief provided. Oh yes age. I am 40.

       

      2.Thank you.

       

      3. So many drugs recently that the FDA approved and have been on the market more than 10 years are just now being sued for the serious side effects they had. Suchas: Depokate, Paxil, Provental, etc. So I am very cautious but optimistic that there might be relief.

       

      4.Thank  you all for all your accurate and true feedback. Like many with RA who are knew, I have always been and continue to try to be a Hard Working American. Boss does not give a crap. Spouse does not understand fatigue level and pain levels. So this support is invaluable to someone like me. New. Or a virgin to RA...lol got to keep some kind of sense of humor.

    • Julie
      Jun. 27, 2010

      Hi,

       

      So sorry to hear that you are not getting support.  If you can document your employeers comments then go to HR.  This way your bad days cannot be used against you.  You have a disability do to an illness.  Your spouce is another thing.  Remind him of the for better/for worse vows he took and that you will stand...

      RHMLucky777

      Read More

      Hi,

       

      So sorry to hear that you are not getting support.  If you can document your employeers comments then go to HR.  This way your bad days cannot be used against you.  You have a disability do to an illness.  Your spouce is another thing.  Remind him of the for better/for worse vows he took and that you will stand by him when and if he gets ill as he ages.

       

      I have had RA since 1991.  I've tried every most every med for RA out there and the only thing that has given me any relief is Prednisone.  I've had to use it along with any other RA med I've tried.  (Embrel,Orencia,Remicade,Simponi,Cimzia etc)  I get some relief from these but also some horrible flare up while on them too.  I've been on Arava for 7 weeks.  I had the worst flare in many years 3 weeks ago.  My Dr put me on a short 3 day course of Dexamethazone (A stronger form of Prednizone).  OMG. My pain and swelling went down 75%.  Slowly the swelling has returned, sadly. I see me Dr this Thurs. The last med left to try is Rutuxin.  I'm worried about this med as it kills most of your B-cells and is also use for Lymphona.  I worry about being so immune suppressed.

      I just don't understand why I'm not responding. 

      I wish you the best in your wellness journey.

      Julie

    • Anonymous
      Pat
      Jun. 30, 2010

      Savella  saved my life.  I take Savella 100 mg  twice per day   the Prednisone 15 mg every other day and Melonicam the other day  That way my health is not as damaged as just the Prednisone every day.  I also have blood work every month to monitor my liver    I also take tramadol  50 MG  it is great for...

      RHMLucky777

      Read More

      Savella  saved my life.  I take Savella 100 mg  twice per day   the Prednisone 15 mg every other day and Melonicam the other day  That way my health is not as damaged as just the Prednisone every day.  I also have blood work every month to monitor my liver    I also take tramadol  50 MG  it is great for pain and Methotrexate 2.5 mg  4 pills per week.  

       

      I could not stand or walk before I started this.  The pain was so bad  I could not move.      I was on a walker  with assistance getting to the bathroom and bathing.   Savella  and the other meds  saved my life. I was down for almost 2 years until I found the right mix of meds.   I don't drink, or smoke and do drink 8-9 bottles of water a day.   NO red meat   Just Chicken and fish but not every day   Diet helps too

       

      Hope the best for you....  MY hands were also affected so it was hard to even grip the walker.  With that much pain you go down fast  I could not even put a shoe on or raise my legs to get dressed.   It was bad  Thank GOD I am much much better 

    • RA is a pain
      Feb. 22, 2011

      I just started Simponi yesterday.  I too have been on almost every RA drug imaginable.  I have had RA since '94. I am a 34 year old mother of 3, and this disease stinks.  I have been on Remicaide, Arava, Orencia, Methotrexate, prednisone, Enbrel, and most recently Cimzia.  The only drug that helped even a little was Orencia.  I was...

      RHMLucky777

      Read More

      I just started Simponi yesterday.  I too have been on almost every RA drug imaginable.  I have had RA since '94. I am a 34 year old mother of 3, and this disease stinks.  I have been on Remicaide, Arava, Orencia, Methotrexate, prednisone, Enbrel, and most recently Cimzia.  The only drug that helped even a little was Orencia.  I was able to go into remission while taking that drug, and then had 2 babies. Now 3yrs old and 8 mos old. I was in remission while pregnant with the babies, and since the 8 month old was born, my disease has come back with a vengence.  My doctor has tried 3 new medications since then, but nothing has worked.  I hope Simponi helps. I will keep you all up to date.

      Kristi