i started on this new injectable drug.. Simponi.. about 4 months ago.. The first 2 months it only seemed to work about 2 weeks and the 3rd month it kicked in and i feel like i am a new person now.. Have gone off prednisone totally and no Arava or Plaquenil.. Although I will still need to take Methotrexate with the Simponi forever..
I do need to add that it costs 1500.00 a month for the one injection and you really need good insurance or are on disability..
Also I live in Canada and it may not be available to you.. yet..
I just hope this info helps someone somewhere and it can be gotten for you... It truly is a miracle drug..Although mouth sores are a pain, that seems to be the only thing so far..
We all need help with this and it should be available to everyone, not just specialized people.
Good luck all.
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Donna--A
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Hi Donna, glad to hear you are having a good response to simponi.
Mouth sores: do you take vitamin C tablets? I've posted many times on here when others have had problems with mouth ulcers due to mtx., my old rheumy nurse told me to increase my vit. c tablets for a couple of days when I had problems with ulcers in my mouth when I first went on to mtx. and it worked for me within hours. I was already taking one a day so increased it to two for about 3 or 4 days and if ever the problem comes back I do the same again. Your recommended daily dose may differ from ours in UK but may be something to try. Hope this helps
Yes, it is available in the UK (its other name is Golimumab) and available for RA and PsA patients who have failed other biologics I think. But like all the biologics (anti-tnfs) you have to jump through a lot of hoops in the Uk and meet specific criteria before you get offered them. I'm really glad it has worked so fast for you though and hope it keeps on working.
Mouth ulcers are quite common with MTX, and can be avoided in most folk by increasing the dose of folate. I assume you take folate as well? If not, thats something to ask about.
Fabulous news, I am so happy for you, how long did it take for you to get onto this drug? Isn't it great though that because of all the research we have drugs that work!! Well done and hope you can now move forward with your life!!
That is great news, so pleasedfor you, we all deserve a break, this is such a rotten condition you just cant under estimate the havoc it wrecks on your body. I think Simponi will be next for me if Humira ever stops working.
Thank you all for the responses and am glad to hear you have it in the UK as well.. Just hope it keeps working lol.. Judi, I will definitely start on the vitamin C thing and pray it works. Anything is worth a shot. Once again good luck all and thanks.. Will let you all know if it ever gives up on me. I hear alot of them do after awhile. So heres hoping.. Keep well all.
always lovely to hear when the meds work long may it continue!
Hello! Your post was 3 years ago. I am wondering if you are still on golimumab, and how was your longer term experience with it? I might need to seitch to gmab and your feedback will be highly appreciated.
Thnaks!
I was on simponi for a few years I used MTX for some of the time
until my liver started rebelling. I had higher enzymes. MTX was
put on the shelf at that time and I used just Simponi. My joints
felt a lot better and my energy was a tiny bit better but overall
I would say that it was goooooood stuff for me.
I have a nerve disease that is calling for Rituxin so we are killing
2 birds with one stone by using this new stuff that I hate. I am
sick with it. I hope to go back to Simponi injection.
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long may it continue!
MTX so far so good.
Enbrel not working so have been offered drug infusions...Rituximab ( MabThera )
New drug
What a year so far
