Off of Enbrel... | Arthritis Information
Question....I have been off of Enbrel for 2 months..My question is this...If Enbrel is the drug of choice to stop Ra, why do i hurt in other parts of my body where I didnt hurt before i started taking it 6 years ago? 6 years ago i only hurt in my feet and hands...now i hurt in my neck, back, chest, knees and hips. Something isn't Kosher here.OH yea, and dont for get the Colon Cancer!!Well, if you believe in the infection theory, Enbrel was masking the symptoms while the mycoplasma causing the disease just got more entrenched. Eventually the mycoplasma got to be so much that the Enbrel couldn't mask it anymore.
That's one theory. One I give a lot of credence to, I might add.I will have to say i agree with you. Its not all that it is claimed to be. So do you believe all the others are the same? Humara...ect
I don't think there's really a "drug of choice" is there? What works for one person may not necessarily work for another. When my RA first started, I was prescribed a very mild drug called Plaquenil and it worked well enough at the time to put me in remission.
Shortly after I started MTX I started feeling worse. I actually thought the MTX was causing me to feel worse. RD said he thought my RA was progressing and added Enbrel. I didn't believe him until I had to quit taking the MTX and Enbrel because of Bronchitis. Then I found out just how "right" he was. I hurt in more places than I knew I had! Maybe your RA is progressing too? Just a thought.
I could be wrong, but I think sometimes our bodies get used to the drug and it becomes less effective.
Were you in clinical remission prior to stopping Enbrel? If your doctor said you were in clinical remission did you have labs, xrays, mri to confirm remission. You may feel like you were in remission but an MRI is the only way to determine if there are small others of inflammation remaining and staying active. You still have active RA if those small areas of inflammation remain. Enbrel is controlling the disease but isn't stopping the damage. Because you're pain free on Enbrel or any dmard or biol. doesn't mean you're in remission. You need to have the exam, labs, xrays, mris done to determine true clinical remisssion according to some articles and studies I've read and my rheumatologist. I've had it all done and mri showed no inflammation from RA so I'm in clinical remission for RA.
Has it been determined that your colon cancer was related to Enbrel usage? Did you have clear colonoscopies prior to and/or during Enbrel therapy?
It's possible the pain your having now isn't from RA? Could be fibro, could be pain from another auto-immune disease, or just plain stress. Lindy
no clinical remission, I developed colon cancer which is a possible effect of Enbrel. That is why im off the drug..by the way, my RA doc. doesnt want to talk about it, told me to stop coming in to see her for the time being.. count those chickensI'm confused.....if you weren't in remission after 6 years on Enbrel why did you stay on it? Most of the time your RDs stop biol. if they aren't working and start other treatments or go on to a different biol. Think it's time to find a new RD. LindyLinB - I'm in agreement with your statement about verifying remissions. Even APer's don't go to those lengths to verify and can end up with the disease coming back worse than before. There's a lot of 'wishful thinking' involved with this stuff. We want to be 'cured' or in 'remission' but we really aren't yet so we go off the drugs and BAM! it comes back.
Nor do I think they are going to ever say it was the Enbrel. I think it is because of how the drug operates (vs. how the disease operates) but she'll never get that in writing and so that info will never be available to us who need to make medical decisions.
Ivypoe - your docs reaction tell me he's not going to report this 'possible adverse reaction' to the FDA. Please consider going to their website and reporting it yourself. They've made it very easy for us now. Please consider this for the rest of us.
Kweenb - your experience is exactly what an APer would expect to happen. We know Plaquenil is some sort of anti-spirochette. It's designed to kill microbes. When you added in the MTX the best you achieved was a holding action because on one hand you were killing off microbes but on the other hand you were suppressing your immune system which would allow the baddies to multiply easier behind the scenes. It's only easing the symptoms not going for the cause. When that happened your doc added in Enbrel and you suppressed your immune system even more. Then you had your bronchitis (probably really c. pneumomia) reactivate and TADA! came off the suppressants and the baddies had a field day with nothing holding them in check at all. According to AP its the same thing as 'disease progression' Which came first, the chicken or the egg? Did the disease progress because the biologic was added? We tend to think so.
Ivypoe -
Just the TNF's seem to suppress the immune system. Also, I think there is another batch of meds in the pipeline that work on a different aspect of the immune system besides TNF's. My thought are - anything that suppresses the immune system has to be a 'last resort' for me. That Rituxan works by depleting white blood cells I think (don't hold me to that one). If I ever have to do a biologic thats the one I'm most interested in (but I hope I never get there :-) Since mycoplasma hide in white blood cells, that sounds like the best option for me considering what my research is telling me.\
Hugs,
Pip
Pip, thanks. Ivy, am still curious why 6 years on the drug without remission, instead of another treatment plan? Once again, this falls into the realm of inadequate follow up. I think I'd be investigating the possibility of holding the RD responsible also. Lindy
[QUOTE=LinB]I'm confused.....if you weren't in remission after 6 years on Enbrel why did you stay on it? Most of the time your RDs stop biol. if they aren't working and start other treatments or go on to a different biol. Think it's time to find a new RD. Lindy[/QUOTE]
I'm confused - why
would someone stay on a med if they were in remission? I think six years of controlled disease on Enbrel would make any rheum happy. Everyone I've ever spoken with, anyway.
[QUOTE=Ivypoe]no clinical remission, I developed colon cancer which is a possible effect of Enbrel. That is why im off the drug..by the way, my RA doc. doesnt want to talk about it, told me to stop coming in to see her for the time being.. count those chickens[/QUOTE]
Suzanne, see the above quote from Ivypoe, she wrote "no clinical remission"
Is that what your referring to or are you making a general statement? It all sounds a little confusing, or is it just my brain fog? Lindy
LinB2008-04-04 12:50:40I have said all along there were things about my dr. that havent been right. My first thought is her health, she has lupus. BUT, possible remisson was never mentioned by her or anyone else in her office. All I know is this.. 6 years on Enbrel, cymbalta, lexapro..any pain meds where asked by me, even suggested what kind by me, she never offered any help..Now that I had colon cancer, she has dismissed me..saying call me when all is treated...I asked for something stronger for pain yesterday via phone..her nurse called me this afternoon and told me to stop all meds she perscribed except for the cymbalta and lexapro..as for pain she told me to take extra strength Tylenol....I cried all afternoon...as for the FDA website, you bet i will report this..it will be my pleasure!
Oh boy, I don't know what to say except start reporting and writing letters. There are county medical agencies, state boards, and federal agencies that govern physician behaviour. I'd request in writing a copy of your medical records, even if you have to pay for them and review them. If you know a nurse or a medical person have them review them also. You may need those records. My heart goes out to you. Lindy
Ivypoe -
Glad you're going to do the FDA thing - and Lin is right - get your records - all of them INCLUDING doctors notes. They are yours by law. If she is affiliated with a hospital, they usually have a department that deals with this all the time. It should be free - but it they balk, just pay for it and deal with it later.
Hugs,
Pip
P.S. Get another MD on board ASAP. Please.
Ivypoe -
Did you see the post I made for you on the Cancer Microbe?
Lin - tried to pm, but you are full!
Quick version - my feelings at this time are that remission/medicine-induced remission is not likely for most patients. Controlling and slowing down the disease is. Enbrel might do that for some patients for six years or more.
No pip i didnt see it..stupid question...where is it?? on this site? sorry to be so ...lost...Suzanne -
Lost here - are you referring to the biologics - or to AP too? Just wondering because my last appt with Dr. L we asked that question. He said maybe 10% go medicine free. That's twice what I was guessing and remission rates (real remission with all labs returning to normal but without stopping the meds) would be more.
Ivy -
It's a seperate thread with the title of "cancer microbe' posted by me. These should now be next to each other now but if not - just page back. No more than 3 pages I'm guessing.
Pip
Hey i found it! thank you, sounds like its something i will be totally into..just hope i can understand the lingo. lol..ty pip..now for me to do something with all this knowledge!
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