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Gron #316855 11/29/08 10:22 PM
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Hi Gron,.. and Welcome to KA!

Thank you for sharing this info with our group. I am so sorry to hear that you had to give up Enbrel for this reason, although I can't imagine they would keep you on it after such an adverse reaction; inflammation of the optic nerve is far too serious.

I'd heard from one Rheumatologist that I know, of a small study a couple of years ago (I think from the Netherlands but not sure ) which suggested Enbrel *appeared* to be inducing new onset iritis in a very small subset of the AS patient population, even though at the same time it was proving to help prevent iritis attacks in so many. While it was not iritis in your case, I do wonder if it's a related type of reaction. At that time, it did not appear to be the true for those on Remicade and the jury was still out on Humira, (as the numbers were simply too small at the time) but I have not heard or read anything further on this since.

Given that a few years has passed, I wonder if clearer data exists now, that your Rheumatologist might have access to? I think it's quite possible that Remicade may not cause the same trouble, as it appears to be more effective against iritis than Enbrel... but then again, the optic nerve is a different thing, and the degree of risk might differ too in your individual case. Anyway, I mention it only on the off chance it might be an option worth exploring with your doctor, if you live in an area with access.

Gosh, it must be terribly disappointing for you. I know for me I'd be downright panicked and depressed, if for whatever reason, I had to face going off Remicade, but can only cross my fingers and hope.

I wish you the very best in finding a helpful treatment that will also safeguard your eyesight.
mig

Gron #316856 11/30/08 01:33 PM
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Hey Gron,
First Welcome to KickAS.org and welcome to our family.

I would just dittie Mig's post. I know that the biologics have different effects on different people. For me remicade was a wonder drug. And Enbrel has been pretty disappointing when I compare its results to remicade.

Don't give up the ship yet. There are several biologics and new meds out there now. And the older ones have been out long enough that there should be some numbers on them and their true side effects.

I tell everyone to be proactive in their own treatment. Work closely with your doctors, push them to give or get you the best help that they can. Take a look at the doctors that you are dealing with. If things don't get better, tell them that the next prescription that they write for you is to be the name and number of a pain specialist. Not just another med.

There is also tons of information on all kinds of treatments for AS right here.

Keep Kickin'AS
Chris


Keep Kickin'AS
Chris

bake510 #316857 12/07/08 04:51 PM
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I think it may be a few different reasons. I've been on remicade for 3 years with good results. I have talked with some that react to both enbrel and remicade in such a way as it isnt worth it. Cost is a factor for some as well. There are those who make too much to qualify for assistance, but dont have enough money at the end of the month to make the copay. Still others have insurancve that wont cover it at all. I hope the enbrel works weel for you, I was too shy of sticking myself to try it

bake510 #316858 12/08/08 05:20 AM
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bake510 #316859 12/08/08 05:31 AM
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Hi again. Just wondering if you have noticed an improvement yet. I am hoping so. Let us know please.

PattyD1 #316860 12/08/08 01:20 PM
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i have noticed an over all improvement. Unfortunatley right now im going through a pretty bad flair which caught me by suprise. Im very happy with the results of the enbrel so far.


Sasha Have a GREAT day!!!!!!!
bake510 #316861 12/08/08 01:37 PM
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I have been on Enbrel for seven weeks now and noticed a lot of improvement. I have a question for everybody. Has anyone else had Enbrel withdrawal the night before they usually inject. I inject on Fridays & for the past couple weeks I have had really severe nausea & vomiting on Thursday night. Only then. I have to suspect there must be some relationship. Anyone else have similar symptoms?


I am not afraid... I was born to do this. -Joan of Arc
bake510 #316862 12/11/08 03:16 PM
Joined: Aug 2007
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I was taking celebrex and plaquenil but had to quit due to side effects. I thought a drug like Enbrel was my next step but my doctor is hesitant to start me on something stronger since my case is mild. I would like to avoid those stronger immunosuppresants if I can avoid due to side effects. I am assuming she is doing a cost-benefit analysis. I am looking into Apremilast as my next choice. Have you researched that? It only reduces the part of your immune system that is attacking you and does not reduce overall immune functions. No serious side effects. It comes in pill form and isn't very expensive (relatively speaking). It is in the second phase of a clinical trial.

Megan #316863 03/23/09 08:36 PM
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OMG ....youre joking I hope they cheaper here in the UK. I didnt even think about the price?

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