Retuxin VS Orencia - Need more information!

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SerumNegative
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/4/2008 2:27 AM (GMT -7)   

 

Well, looks like I have hit the wall again.  Remicade is not working and I am at max dose, shortest time.  Just diagnosed with Sjogrens by my Rheumatologist and it seems I have had it for as long as I have had Rheumatoid Arthritis.  Both do not show up in any blood work as I am Serum Negative (10% of populous).  I am also a guy, and Sjogrens is only 10% affecting men.  I HATE beating the odds like this!  Initial diagnosis was salivary biopsy when tear glands started to go, but the disease was not yet in my salivary.  Now it is in my eyes, sinus and salivary and probably had something to do with the Chronic Pancreatitis back when this all first started (overnight 4 or so years ago).  Both the RA and the Sjogrens is severe and the quality of life issues are down, way down.

 

Problem:  Now that Remicade is a no go, I get to choose from Retuxin or Orencia.  Who knows what about either, who knows what about the effects of either on Sjogrens.  Please don't tell me what the Internet says, I am looking for personal experience, ideas about which to choose.  Side effects on both are staggering.  What experiences have you had with these drugs?  How did you make your decision?

 

I need to decide so that I can go in immediately once my infections clear.  One thought, Retuxin has to be in the hospital, which is NOT convenient, but I want what is best.  HELP!

 


 

Thanks,

SerumNegative 

 

Current Diagnosis-Serum Negative Poly Migratory Rheumatoid Arthritis, Serum Negative Sjogrens Syndrome (eyes, sinus, mouth, Possible Chronic Pancreas involvement), Chronic Pancreatitis, Acid Reflux, Depression.

Current Meds-Remicade (max dose, shortest time), Methotrexate 5 mg once weekly, Folic Acid daily, Lorazepam 2 mg at night, Lisinopril, Citalapram, Lipitor, Prednisolone Ophthalmic acetate, Pilocar 4% (1 drop oral 4 x daily), Tylenol PM at night, Prednisone (as needed), Oxycodone (as needed).

Testing/Surgeries-Sinus (twice) from reoccurring infections, Cataract surgery in both eyes from long term Prednisone use, Endoscopy 3 x (once with ultrasound), Colonoscopy, monthly blood work.

Current Issues-Bladder Infection, Sinus Infection, Salivary Glands Infection-on antibiotic #6!.  Remicade no longer works after 4 years.  Issues with vision being blurred and out of focus.  Night vision has suffered.

 

Post Edited (SerumNegative) : 2/7/2008 3:21:49 AM (GMT-7)


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 2/5/2008 8:54 AM (GMT -7)   
What ultimately decided for me was that Orencia is out of my system in a month......so if I get infections (I tend to get infections on the biologics) I'm able to recover faster because the Orencia is out of my system faster. Then as soon as my infection clears, I get my infusion.

If you are on Rituxan and get an infection, you can't adjust the meds because it's in your body for 6 months.

I'm doing well on Orencia and haven't had any side effects. Good luck with your decision.
Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/5/2008 12:50 PM (GMT -7)   

Hi SerumNegative,

I do not have experience with orencia or rituxan, but i do have RA and sjogren's.  From what I understand TNF is implicated in sjogren's, just as it is in RA, so any of the tnf-inhibitors would work.  I currently take enbrel and mtx.  One thing I noticed in your signature is that you're taking only 5 mg of mtx/week.  This is a fairly low dose.  I started these drugs taking enbrel alone and gradually adding mtx.  Mtx didn't start making a difference until my dosage was increased to 15 mg/week.  That in combination with the enbrel has been my magic elixir.  Is there a reason why your doctor has not raised your mtx?  For reasons no one seems to understand, it often take both mtx and one of the tnf-inhibitors to control these stupid diseases.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


SerumNegative
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/7/2008 2:58 AM (GMT -7)   
Howdy all and thanks to all for the info and opinions.  I am greatful. 
 
I have been told that Remicade does not work on Sjogrens at all (double blind study) and due to financial issues with a 50/50 copay on drugs not administered in a medical setting, Enbrel and Humara are out (can't afford).  The low MTX dose was due to liver issues.  Remicade was working great until recently.  about 2 months ago the Sjogrens really kicked in (started slowly 4 years ago), the Remicade stopped working.  Now I have been given the choice of Retuxan or Orencia as they work with Sjogrens.  Both T-cell and B-cells are suspect in Sjogrens, and though there is more info that Retuxan works, Orencia is being looked at in 2008.  I understand the issues with infections as I get them OFTEN and bad.  Maybe Orencia is the best choice, but I would love to here from some other folks that have Sjogrens and have taken either Retuxan or Orencia.  PLEASE RESPOND and THANK YOU!!!!
 


 

Thanks,

SerumNegative 

 

Current Diagnosis-Serum Negative Poly Migratory Rheumatoid Arthritis, Serum Negative Sjogrens Syndrome (eyes, sinus, mouth, Possible Chronic Pancreas involvement), Chronic Pancreatitis, Acid Reflux, Depression.

Current Meds-Remicade (max dose, shortest time), Methotrexate 5 mg once weekly, Folic Acid daily, Lorazepam 2 mg at night, Lisinopril, Citalapram, Lipitor, Prednisolone Ophthalmic acetate, Pilocar 4% (1 drop oral 4 x daily), Tylenol PM at night, Prednisone (as needed), Oxycodone (as needed).

Testing/Surgeries-Sinus (twice) from reoccurring infections, Cataract surgery in both eyes from long term Prednisone use, Endoscopy 3 x (once with ultrasound), Colonoscopy, monthly blood work.

Current Issues-Bladder Infection, Sinus Infection, Salivary Glands Infection-on antibiotic #6!.  Remicade no longer works after 4 years.  Issues with vision being blurred and out of focus.  Night vision has suffered.

 

Post Edited (SerumNegative) : 2/7/2008 3:19:25 AM (GMT-7)


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/7/2008 4:23 PM (GMT -7)   
just bumping you to the top of posts in hopes someone out there can help, sorry i cant. take care though yally

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 2/7/2008 9:53 PM (GMT -7)   
Hi there SN,
I have RA but not sjogren's. I have had two rounds of Rituxan over the last 5 months. That is 4 total infusions as each infusion is given 2 weeks apart. It was right before or within a week of my Second round (4 months) that I was amazed at how I have felt. I didn't hurt. I was a new person. I am getting close to the next one wearing off so right now I am not so good but it hasn't been the best weather either. Rituxan has to be given with Methotrexate so if you are not on this I would get that started. As for side effects. Other than infusion side effects the day after I really haven't had any at all. Actually, I am sick less than I have ever been if that says anything. Bloodwork has remained stable and crp had dropped way down. Overall, I feel that this drug was the best choice I could have ever made. However, I am not only on this but 25mg of methotrexate, Arava, Folic Acid (which i will never skip again), and an occassional anti inflammatory. I will say that I haven't had to be on steroids now for over 3 months. Woohoo. Of course everyone responds differently and they take care to give steroids, benedryl, and tylenol prior to the infusion to reduce any chance of severe reactions. I never had a severe one but I did have weakness, sweats, and a general not feeling well type of feeling but for no more than 24 hours. If you can get it then go home and sleep it off I think it is better. Oh, and yes you do sit there for nearly 8 hours and you can't sleep because they check your vitals every 15 or 30 minutes but overall it really isn't that big of a deal because you do this twice in two weeks and then may not need anything for 6 months to a year or even more. I am really hoping for the more part but I think I need to make a lot of lifestyle changes before the more part will come.

Good Luck in making your decision.
Theresa
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Arava 20mg, Rituxan infusion, Folic Acid, Fish Oils, Advil, Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


SerumNegative
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/7/2008 11:59 PM (GMT -7)   
Thank you ALL! There are pro's and cons for both drugs and I appreciate the feedback. MORE PLEASE. I will say this much for Retuxan, my best friend had lymphoma and it was a brand new drug. He had relapsed on the other drugs, took this one, felt so great when he got it that he played racquetball on those days and is cancer free, like cured!!!! Orencia, dang it, is more convenient but I don't know if it works for sure with Sjogrens. I need more input before I can move forward. All feedback, good or bad is needed. This is a scary process. Theresa, what did the doc tell you about side effects? Did he paint the whole scary picture? My Rheumy is pushing Retuxan. God knows I would like a semi normal life...


 

Thanks,

SerumNegative 

 

Current Diagnosis-Serum Negative Poly Migratory Rheumatoid Arthritis, Serum Negative Sjogrens Syndrome (eyes, sinus, mouth, Possible Chronic Pancreas involvement), Chronic Pancreatitis, Acid Reflux, Depression.

Current Meds-Remicade (max dose, shortest time), Methotrexate 5 mg once weekly, Folic Acid daily, Lorazepam 2 mg at night, Lisinopril, Citalapram, Lipitor, Prednisolone Ophthalmic acetate, Pilocar 4% (1 drop oral 4 x daily), Tylenol PM at night, Prednisone (as needed), Oxycodone (as needed).

Testing/Surgeries-Sinus (twice) from reoccurring infections, Cataract surgery in both eyes from long term Prednisone use, Endoscopy 3 x (once with ultrasound), Colonoscopy, monthly blood work.

Current Issues-Bladder Infection, Sinus Infection, Salivary Glands Infection-on antibiotic #6!.  Remicade no longer works after 4 years.  Issues with vision being blurred and out of focus.  Night vision has suffered.

 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/11/2008 1:14 PM (GMT -7)   
out of curiosity...are you taking 1800mg of remicade every 3 weeks? just wanted to know what the maximum dose was for you. i do 600mg every 3 weeks right now.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


SerumNegative
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/17/2008 9:55 PM (GMT -7)   
Hi, sorry for taking so long, but I was infused with 900 mg Remicade every 4 weeks and was told this was the max dose for my body weight of 182 (now at 172 and dropping fast).  I am on 40 mg prednisone right now waiting to see the Rheumy on Tuesday.  We will be discussing the Orencia vs. Retuxin subject, though I had hoped to get some input from Sjogrens sufferers.  Any thoughts?

 

Thanks,

SerumNegative 

 

Current Diagnosis-Serum Negative Poly Migratory Rheumatoid Arthritis, Serum Negative Sjogrens Syndrome (eyes, sinus, mouth, Possible Chronic Pancreas involvement), Chronic Pancreatitis, Acid Reflux, Depression.

Current Meds-Remicade (max dose, shortest time), Methotrexate 5 mg once weekly, Folic Acid daily, Lorazepam 2 mg at night, Lisinopril, Citalapram, Lipitor, Prednisolone Ophthalmic acetate, Pilocar 4% (1 drop oral 4 x daily), Tylenol PM at night, Prednisone (as needed), Oxycodone (as needed).  NEW - Prednisone 50mg, Hydrocodone 7.5mg and SOMA.

Testing/Surgeries-Sinus (twice) from reoccurring infections, Cataract surgery in both eyes from long term Prednisone use, Endoscopy 3 x (once with ultrasound), Colonoscopy, monthly blood work.

Current Issues-Bladder Infection, Sinus Infection, Salivary Glands Infection-on antibiotic #6  #7!.  Remicade no longer works after 4 years.  Issues with vision being blurred and out of focus.  Night vision has suffered.

 


SerumNegative
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/19/2008 10:21 PM (GMT -7)   
Ok, Here is the answer, though I would still like LOTS MORE INPUT.  The Rheumy is setting me up to take another biopsy for Sjogrens, but before we get the answer, we will be starting on Orencia.  Even though I have serum Negative Sjogrens (indicators don't show in blood), if the biopsy is positive, the Doc will probably switch gears and go to Retuxin.  Now, he told me today about a new drug that will be out by next quarter.  A wonder drug for RA and Sjogrens that was developed in Japan and is being studied here in the USA and is before the FDA!  Let me know if you have ANY information on the drug I am referring to or if you are part of the study.

 

Thanks,

SerumNegative 

 

Current Diagnosis-Serum Negative Poly Migratory Rheumatoid Arthritis, Serum Negative Sjogrens Syndrome (eyes, sinus, mouth, Possible Chronic Pancreas involvement), Chronic Pancreatitis, Acid Reflux, Depression.

Current Meds-Remicade (max dose, shortest time), Methotrexate 5 mg once weekly, Folic Acid daily, Lorazepam 2 mg at night, Lisinopril, Citalapram, Lipitor, Prednisolone Ophthalmic acetate, Pilocar 4% (1 drop oral 4 x daily), Tylenol PM at night, Prednisone (as needed), Oxycodone (as needed).  NEW - Prednisone 50mg, Hydrocodone 7.5mg and SOMA.

Testing/Surgeries-Sinus (twice) from reoccurring infections, Cataract surgery in both eyes from long term Prednisone use, Endoscopy 3 x (once with ultrasound), Colonoscopy, monthly blood work.

Current Issues-Bladder Infection, Sinus Infection, Salivary Glands Infection-on antibiotic #6  #7!.  Remicade no longer works after 4 years.  Issues with vision being blurred and out of focus.  Night vision has suffered.

 

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