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Has anyone tried Simponi or Cimzia?

Naomi
Naomi
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Naomi is struggling with a need to change careers now

10/22/09

I have tried all of the following meds: Enbrel, Humira, Remicade, MTX, Arava, NSAIDS--prescribed and OTC--and Narcotics. I follow an anti-inflammation type diet, and take acai, high dose fish oil and other supplements. I have been on the following combo for the 22 months: Arava, Meloxicam, prednisone, HCTZ, and Orencia with good results until lately. For the past several months I've been getting progressively worse in pain, swelling, fatigue, fevers again. Now I'm on a medical LOA from work (again) and hurt HORRIBLY from neck to toes!! My rheumy wants me to consider changing to either Simponi or Cimzia.  has anyone tried either of them?  I'm glad there are new meds to try, but I don't know anyone on them.  I've read the pamphlets but would like some "real-life" info.

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Lene  Andersen
Lene  Andersen
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Lene Andersen is wondering how to clone herself

Lene Andersen is a writer and photographer living in Toronto,...

Friday, October 23, 2009

I believe there are some users on this site who have tried the meds you're asking about.  Try asking the question again in a SharePost - they tend to get more traffic, so it may increase your chances of getting a reply.

 

Good luck!

 

 

Eddie
Eddie
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Eddie is doing well..how about yourselves?
IT Professional, diagnosed in 1998.

Friday, December 18, 2009

I have just started Simponi ( 3days) so really too early to tell. After 11+ yrs on same meds (Enbrel, MTX, NSAIDS,Celebrex) simply stopped working I too am hurting from neck to toes and am hoping this one will give another 10+ years B4 giong to the next. Sorry I could'nt offer more info, just not at this time. Good luck.

re: Has anyone tried Simponi or Cimzia?
Naomi
Friday, December 18, 2009 at 05:04 PM

thanks for writing!  I wish you the best of luck on the meds!  Please let me know if you notice any improvements.  I haven't changed meds yet--ruling out avascular necrosis of both hips before deciding on a new med regimen.  I guess I'll know by the 1st of the year whether it's time to change or i've developed yet another problem--having an MRI just before Christmas.  Ahh...the joys of RA....one things for sure, there's never a dull moment!!

 

Anyway,  have a very merry Christmas and good luck with the med. Please let me know how you're doing on it.

Thanks,

Naomi

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Bob
Sunday, January 17, 2010
48yr old male / Yes, tried Cimzia and about to try Simponi. I was on Enbrel for 7 yrs (along with other accompanying meds) and my RA was aggressive so the dosage was one inection (25mg) ever other day instead of standard shot every third then fourth day, recurring as such. then the spring of 09 , the Enbrel seemed to stop working for me (just as Remicade had done back in 2004 after 9 months of use) (remicade costly too!). I next tried 1 month of Humira and developed a upper respiratory infection I then went to cimzia which has a heavy initial dosing the first 6 wks of 2 injections every 2 wks to saturated your body then a maintenance dosage of one shot every month thereafter. It is a syrupy, sticky clear fluid that really stung going in. As of at least now, there are not overdosing symptoms listed for Cimzia but I can tell you what they may be = My response was a very flush red face like a sunburn (especially after warm shower) with rest of body being warm, Then after my 3rd and final intial dosage of 2 shots I received a very powerful throbbing neuropathy throughout my whole body which took me out for the next 3 wks and there was nothing I could do about it except pray. This was also during the time my wife was in the hospital donating half her liver to save a friend (which turned out ok) so I had to still be strong to help her through. This chronic throbbing was a end result of using Cimzia and caused complete nerve damage by stripping the nerves protective coating away thus short circuiting and misfiring my body’s nerves signals. All of the RA injection meds (and even RA itself) can cause nerve damage along with other problems, but I was ok until the Cimzia as far as the nerves go, the Cimzia really did it. I stopped using Cimzia Sep 10/09 after that last initial dosing and returned to enbrel doing one shot every 5-7 days just to kept me from getting too bad. The Enbrel didn't seem to affect the pounding neuropathy (that I still have as of 1/17/10 and will for life). An analogy of the nerve feeling now is like if you ever cut your finger tip deep enough and got a throbbing sensation afterwards that really hurt??. So every heartbeat I have I can feel the pulse of the blood traveling through my veins outward towards all my extremities except it's the nerves that I feel. This is a 24/7 pain for me and no amount of pain killers stops the pain; it just takes the edge off. I am about to try Simponi this day Sunday 1/17/10 and am praying that this won’t create more problems for the next 30 days. I also have 2 herniated discs and one bulging disc in my lower lumbar, 1 cervical degenerated disc which causes migraine headaches that last for 1.5 days and here again, no amount of pain killers helps (but the chiropractic care I receive really does help), also have carpal tunnel both wrists and developed moderate asthma recently. I'm 48, well built 6' tall male in metro Detroit area that did commercial and industrial roofing for the last 30 yrs and worked through all seasons, heat, rain, snow (rarely collecting unemployment until now). I did all types of repairs, installations and estimates of all roofing types including residential shingles and flat or metal roofs. I could solve leak issues that no one else could for 14-20 yrs (several occasions). I was diagnosed with RA in 1988 and started treatment in 2002 (late due to not realizing what RA really was, I just thought it was regular arthritis due to hard work, I never really realized the significance of it). This is to give you an idea of how strong my mind, soul and spirit is, and body was..... but my body can no longer take it. I had to stop working in june and applied for SSI (still waiting of course) and currently in physical therapy. If you want, I'll let you know how the Simponi goes.
re: Has anyone tried Simponi or Cimzia?
Naomi
Monday, January 18, 2010 at 10:56 PM

I would love to hear how you are doing...I am so sorry that it's been so bad, especially after the Cimzia!  I hope the Simponi works for you and I pray the neuropathy will eventually resolve on its own (or with the help of Simponi).  I wish I had other answers for you....I know someone who went into adjusting after years of roofing/construction caused many physical ailments too.  It doesn't require the physical demands, anyway. In the meantime, I hope SSI comes through and quickly!!  This disease is just awful!!   Obviously, you are of strong mind and heart and I pray that that continues.  You really have to be strong on the inside with RA....and it's hard!.  I wish you the best on Simponi....please let me know how it goes.  Thanks for the info on side effects on Cimzia too---the docs talk like these are the latest and greatest, but it doesn't sound so great to me....obviously it's been H*@! for you...God bless and I wish you all the best!

 

God bless 

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