So today I went to my Rheumatologist for my regularly scheduled follow-up visit. We've decided to stop Simponi and to begin Remicade in a few weeks. This is my last chance....every other medication has lost it's effectiveness or has failed. Work is difficult, washing dishes is difficult, petting my dog is difficult and a good night's sleep is impossible. The pain is just horrible....I am praying this works....I cannot even imagine being like this for the rest of my life.
Dear Suzanne,
You will have my prayers as well. There are many here who have been helped tremendously with Remicade, and I hope that you will be another one of them. I know that you are very strong, and I hope your strength can get you through this. Please know that the scientific community is always releasing new drugs into clinical trials, there is always hope on the horizon.
Sending you my best,
SK
You're not even close to the end........ But I'm confident the Simponi will work. There are the specifics:Actemra, Kineret, Orencia, and Rituxan. and combinations thereof some amazing results with DMRDs and stellara and just recently RoActemra.
They are combining the new generation with various families of "antidepresents" and NSAIDS and getting amazing results.
I've been on Enbrel, Humira, Simponi, all with Methotrexate. (If I listed all my antidepressants, anti-anxiety meds and such we'd be here all night) My Rheumatologist said that he was disappointed in the PsA trials with Stelara...says it works great for the skin, but not so great with PsA. Orencia as well - did not prove well in PsA studies. He said the problem with Simponi is that he doesn't think the dose is high enough, and it can't be given more than once a month. The RA drugs come out much faster, but the effects they have on PsA are not always so great. He says the Remicade has more flexibility to be adjusted so hopefully we can find that right dose. My Rheumy is great - an expert in PsA that has given lectures all over the country and I have the utmost respect for him. I could tell by the look on his face that it was hard for him to say, "let's move on to Remicade", because it is the last of the approved drugs I can try.
I’ll be praying for you too. Good luck, don’t give up.
I hope the remicade works as well for you as it seems to be working for me. My rheumy suggested remicade for the same reason - being able to adjust the dosage to fit my needs. My PsA is so aggressive that I went from nothing to Enbrel to Remicade in six months.
Remicade has done WONDERS for me.. I went from not able to go up and down stairs, barely walking to running and exercising and playing in the floor with my kids in less than a yr.. If you have any questions about it don't hesitate to ask! I wouldn't be the woman I am today (healthy) without it! :) Hope it works for u!!!
Thank you!
SK said:
Dear Suzanne,
You will have my prayers as well. There are many here who have been helped tremendously with Remicade, and I hope that you will be another one of them. I know that you are very strong, and I hope your strength can get you through this. Please know that the scientific community is always releasing new drugs into clinical trials, there is always hope on the horizon.
Sending you my best,
SK
I will keep researching!!
tntlamb said:
You’re not even close to the end… But I’m confident the Simponi will work. There are the specifics:Actemra, Kineret, Orencia, and Rituxan. and combinations thereof some amazing results with DMRDs and stellara and just recently RoActemra.
They are combining the new generation with various families of “antidepresents” and NSAIDS and getting amazing results.
I hope so too!
remicadebeliever said:
Remicade has done WONDERS for me… I went from not able to go up and down stairs, barely walking to running and exercising and playing in the floor with my kids in less than a yr… If you have any questions about it don’t hesitate to ask! I wouldn’t be the woman I am today (healthy) without it!
Hope it works for u!!!
Thank you i appreciate it!
bumble said:
I’ll be praying for you too. Good luck, don’t give up.
Aggressive is the word!!
remicadebeliever said:
Remicade has done WONDERS for me… I went from not able to go up and down stairs, barely walking to running and exercising and playing in the floor with my kids in less than a yr… If you have any questions about it don’t hesitate to ask! I wouldn’t be the woman I am today (healthy) without it!
Can’t they go back and try some of the others again? I know with the P meds it works that way. Something works for a little while and stops, so you switch, but try again after a break from it and it works again.
I did try going back to enbrel after being off it for a year, but no luck with helping the PsA and my skin lesions started coming back. My PsA has been very aggressive over the past two years.
That's what my rheumy talked of to me today as well. Just pulled the plug on Humira today and I will start Orencia infusions in the next few weeks - already tried Asulfadine, Methotrexate and Humira with no good or long term results. I can't try Asulfadine again because I am apparently allergic to it (sigh) and will will try an additional drug if needed with the Orencia on board. I hope that Remicade works well for you Suzanne. Good luck!!
CJCB said:
Can't they go back and try some of the others again? I know with the P meds it works that way. Something works for a little while and stops, so you switch, but try again after a break from it and it works again.
If you had any response to the Simponi the remicade should really kick....... They are very similar but as your doc said Simponi might not be strong enough.
I was on Simponi for just a little over a year and I had about 3 weeks of "little to no pain", but once the pain came back it was HORRIBLE...worse than ever.
tntlamb said:
If you had any response to the Simponi the remicade should really kick....... They are very similar but as your doc said Simponi might not be strong enough.