Coming off Remicade

** Originally posted by judyweaves **

Hello,
I've been taking myself off Remicade, and it's hard. My last infusion was late Feb. In the past 4 weeks, I've had more pain than I ever had before Remicade.
I'm stopping Rem. because my liver enzymes became elevated in Dec. 09 (4 times above normal). Although the GI dr. and rheumy said it was OK for me to continue Rem., I didn't feel well with the liver problem. Since starting Rem. in May 09, I've never had great results with it.
I've been worried that the rheumy is more concerned with his profits than my health.
I once read that somebody else coming off of Rem. thought that it had caused his/her disease to progress. I now have pain & swelling in many joints (shoulders, wrists, knees, hips, ankles, etc.) that gets very bad at night. Also nausea at night. The pain is so bad that I have trouble turning doorknobs, getting into bed, and even opening my chap stick tube, etc.!
Anybody have experience coming off Rem.? Judy

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** Originally posted by RichJ **

hi judy,
im sorry that i can't help much but i can bump you to the top and maybe some will come through and help with your ?. i wish you the best

try and have a good weekend all

richard

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** Originally posted by d-ray **

Hi Judy,
I had great results with Remicade as far as my P is concerned, but PA not so lucky!!!! My blood counts were all over the place and when I came off, I could not WALK or use my hands hardly at all. I was having problems with my head and neck. Alot of shooting pains in my head, they thought (numerous kinds of Docs) I had a tumor or Temporal neuritis, etc. On, and on. It works great for some and not for others.

The only thing that helped me move was a Medrol Pack of which after4 months am down to 3 mg. I am now on Simponi but still have alittle pain of which we will deal with when I get back from a much needed vacation. You probably need to talk to your rheumy, or definitely find one to listen to you!!!!

Good Luck, I know what you are going though.

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** Originally posted by Kentucky_Girl **

hi, judy. i'm really surprised you were told that you could continue remicade with your liver enzyemes elevated. mine were just barely elevated one time and my rheumy checked them again immediately and said if they were not down to normal then i had to come off the meds. it was mtx for me. i think you are making the right choice in coming off the remicade.

how about sulfasalazine? i'm not sure if it is as hard on the liver. it has been working pretty well for me. also, remicade is a lot stronger than enbrel, humira and simponi. maybe once your liver enzyemes are normal you would be able to give one of those a try and see what happens.

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** Originally posted by judyweaves **

Hi, Ang,
Thanks for your reply. I had been on Remicade for 8 months when suddenly my liver enzymes shot up 4 times above normal. My GP immediately took me off Lipitor, which did not bring my liver enzymes down. My Rheumy thought I should continue on Remicade. I've become disappointed in him. Last summer he told me that he doesn't care about making a lot of money as a dr. -- he presented himself as this liberal, humane dr. The GI dr. said my enzymes might continue to go up and down, but I could stay on Rem. as long as the enzymes don't reach 5 times above normal. I didn't feel well and when I was young I drank too much for about 16 years -- so I'm worried my liver is vulnerable. Finally I said no more Rem. -- since then I've had some of the worst physical pain I've ever had in my life. When I have a bad day, though, the next day is usually better. Thanks for the other recommendations. Maybe I'll try one of the other drugs. Judy

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** Originally posted by vinnylid **

Judy,
My arthritis attack was very sudden and severe in Dec 2007. I used Diclofenac and various levels of Prednisone to keep functional until June 2008 when I started antibiotic protocol. In June 2008 I started 100mg twice daily Minocycline antibiotic and 50mg Diclofenac. I stopped Methotrexate the week I started Minocycline and weaned off Prednisone in 30 days and have not had to use Prednisone again. I got almost immediate pain relief from this approach. It is important to have inflammation under control when starting the antibiotic protocol and some level of Prednisone is commonly used for a short period of time. In Feb 2009 I started using Low Dose Naltrexone(LDN) which has allowed me to reduce my Minocycline to 100mg M,W,F and stop using Diclofenac. I am currently pain free and am playing golf again. The antibiotic approach works for some people if they don't have a strong genetic link to psoriasis.
vinnylid

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** Originally posted by Flycaster **

...The antibiotic approach works for some people if they don't have a strong genetic link to psoriasis.

Vinny, could you please link me to something so I can read more about that? Is this a Dr. Madelene Heng [UCLA] statement perhaps?

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** Originally posted by vinnylid **

Vinny, could you please link me to something so I can read more about that? Is this a Dr. Madelene Heng [UCLA] statement perhaps?

As far as the antibiotic Protocol part is concerned I got my info from http://www.roadback.org and http://www.rheumatic.org and click on faq. My primary care internist is writting the script. My reference to genetic link is just based on my limited observation. Some people have not been helped by AP, but it has worked for me. I have no known family link to have psoriasis, which leads me to the infection connection. Minocycline is so safe and easy to try, but most Rheumatologist won't try it as a first option to rule out an infection cause. In Nov 2007 I played golf daily and was very physically active. By the end of Dec 2007 I could barely get in and out of the car and drive. Sleep was for short periods of time in the recliner. Currently I have no pain limited activity and sleep 8 hours a night in bed. I don't believe this disease has remission and my pain starts to come back if I back off on my current treatment plan.
vinnylid

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** Originally posted by Kentucky_Girl **

i was going to ask the same thing as was wondering if by genetic link you meant the HLA-B27 gene? i do have the gene and know it is an indicator of more severe disease and spondylosis. i have not heard that it was a genetic link to psoriasis tho and would like to read more on this subject.

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** Originally posted by judyweaves **

I seem to have a genetic link. When I had my DNA tested with 23andme, they found that my top three health risks are for: type 2 diabetes, breast cancer, and psoriasis. They also found that I have a less-than-average risk for rheumatoid arthritis. This is pretty much on target because type 2 diabetes runs in my family (I don't have it), I have stage 0 breast cancer (LCIS), and of course I have psoriasis and psoriatic arthritis (my father has psoriasis, too).

I don't know if the antibiotics would work for me, since I have a genetic link. I'm trying the natural route right now: gluc. & chron., lots of fish oil, zyflamend (has anyone tried it?).

Judy

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** Originally posted by vinnylid **

Judy
I was using glu., msm, chron., fish oil and Zyflamend when my Psoriatic Arthritis attack started. They have very little impact on an autoimmune disease, but do help osteoarthritis.
vinnylid

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** Originally posted by jagfangirl27 **

Judy
I was using glu., msm, chron., fish oil and Zyflamend when my Psoriatic Arthritis attack started. They have very little impact on an autoimmune disease, but do help osteoarthritis.
vinnylid

I take fish oil every day and it does help, which makes me think I have OA going on as well as the PsA.

I had to come off Remicade because of a "lupus-like" syndrome where the blood marker for lupus was at near-lupus level. Once the Remicade worked itself out of my system, it went back to normal. Coming off Remicade was quite uncomfortable, very tiring and I thought I would never get better. Lots of pain and fatigue. I'm on Humira/MTX now and have had better results than with Remicade.

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