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.....



I 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).

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