Hello all, sorry I have been absent. My question revolves around what sort of treatments/medications exist after Remicade and/or all TNF Blockers?
Both Enbrel and Humira did not work well. It did have some pain relief but nausea was really strong with Humira and pain/swelling was not significantly relieved. I started Remicade 6 weeks ago and just had my 3rd infusion. So far I am experiencing strong "flu like" symptoms after each infusion. Its also getting stronger and lasting longer, for example, it lasted about a week after the 3rd infusion. Plus, I now have muscle soreness/ache/pain in calves, thighs and forearms. Feels like I just lifted weights all day yesterday and now all muscles are very sore.
I have an appointment with Michigan RM tomorrow but its starting to look like Remicade is not the answer for me either!! Thus, I assume this ends the TNF Blockers for me so does anyone know of other treatments that are used for people like me? Basically went thru the basics....MTX, Arava....then Biologicals Enbrel, Humira and Remicade (all TNF Blockers). Whats next?
Any advice, suggestions would be greatly appreciated as I have an appointment with my Cleveland Clinic RM next week and I want to ask her this same question so it would be nice to be prepared. Even if its just a start I could then research it via Google.
Thanks in advance
Chris
I haven't tried it myself, but a lot of people swear by antibiotic protocol therapy. Check out www.roadback.org or read the infection theory vs disease modification and other AP threads on this board. And let us know how things turn out for you! Good luck.As far as biologics go, the next ones are Orencia and Rixtuan. I do not how well anyone has done on those.
Have they investigate other reasons you are getting so sick? Maybe something else is going on that is causing the problems. GI symptoms are very common with RA, FM, etc.
Those are a couple of things you might ask about and if the Remicade is doing any good for you. By the 3rd infusion, there should be something showing up in either your symptoms or bloodwork.
It sure wouldn't hurt to mention the AP therapy at this point. It seems like it is a lot less dangerous and less expensive than the biologics. If nothing else, it would be interesting to see what they think about the therapy. Printout the pages and take them with you.
I'm sorry to hear you are not getting relief.
I've been taken off of Humira and once it's out of my system my doctor wants me to consider Rituxan or Orencia because these are in a different class of drug than the ones you mentioned above.
Considering you aren't getting good results with the TNF blockers it would make sense to switch to something that works differently. You might want to do some research on these.
I'm considering Rituxan. I've talked to a couple people that are having amazing results and it's only a twice a year infusion! Wouldn't that be great?
Good Luck. Hope you find something that works well for you. I know it's frustrating.
Thanks Gimpy, Deanna and Lovie for your replies.
Like most others, I have spent several years as undiagnosed until the synovitis really started showing up in multiple joints. That's when the light bulb went off in my doctors heads. For months they held off on the RA DX because my RF was zero! Until I started showing clinical signs (swollen fingers, thumbs, wrists and knees) was when they ordered additional MRI's and all came back with synovitis, tenosynivitis and sadly, bone erosions. Thus, since it really quacks like a duck, walks like a duck and flys like a duck......I think its a duck:) Just in case I still see a rheumatologist at the Cleveland Clinic every few months to OVERSEE my entire care. I feel it gives me a second set of eyes on how my treatments are doing.
I am definitely going to research Orencia, Rituxan and AP. However, are these the only 3 types of treatments left for me to try?? Then its either choose the one that worked best or none at all?
This is tough to swallow but I am still holding out hope that either the Remicade or one of the remaining treatments induces remission. I think I am going to keep trying the Remicade until about 4 or 5 infusions to make sure I gave it a good shot. Perhaps my expectations are too much? From talking to others, reading online posts and doing research, I see that people get REMISSION from any one of these treatments whether it be MTX, Arava, Humira, Remicade, Orencia, AP, etc. I also assume REMISSION means that they have little or no symptoms of pain, swelling, etc.
If I am assuming incorrectly about the remission and/or my expectations are out of whack, please put me in my place. Educate me so that I don't have these whacked out expecations.
I sincerely wish you all the best and thank you again for the response. Further advice about what I wrote above would be greatly appreciated. I will also review the thread about AP.
Chris
Hi Chris..I also had side effects with Enbrel and no improvment with Humira. I just had my 4th infusion of Remicade and my rd seems puzzled by my results. I also get increased swelling and pain after my infusions. I get a bad flare in the shoulder of the arm that my IV was in, and I have had increased muscle pain and weakness esp. in my legs ever since I started it. Because I didnt have luck with the other biologics my doc started me out at 5mg/kg of Remicade which is a higher dose than if it was my first biologic. Do you know what your dose is?
My doc has not had a great a sucess with his pts that are on Orencia, but says the ones that are on Rituxin are quite excited about the results they are getting. I am just a little leary about the possible severe side effects connected with the rituxin...both of these drugs have only been approved for use in RA for a year. I dont know how I feel about being a guinnea pig.
I think I am going to give the Remicade a few more chances...at least 2 more infusions. Then...I dont know. I found it interesting that you are having the same muscle problems though..that gives me alot to think about. It has been really bad for me and the pain can become very severe at times. Other wise I still have flares, and fatigue most days. I do have good days...but not enough to call it remission..not even close.
I am not here as much as I am at rasushi, but I will try to keep up with you..I am interested to see what you find out or do..since it sounds like we are in similar situations.
Hi! I am on AP for scleroderma with RA overlap. In addition to the sites mentioned above and the AP threads here, another site is www.rheumaticsupport.net There is a wealth of info and testimonials as well as a message board on both the rheumaticsupport and the roadback sites. Good Luck - you sound very proactive, after all, no one else knows or cares as much about our bodies as we do. Best regards, Pat