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gbash #486328 03/28/13 02:17 PM
Joined: Jul 2012
Posts: 160
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First_Degree_AS_Kicker
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Hi and thanks for replying, sorry about your stories, and hope you are feeling better.Does any body know any thing about "kineret"? imn this site : (http://www.rheumatology.org/practice/clinical/patients/medications/biologics.asp), in one of the tables, it sais that all of the biologics can cause MS, except for "kineret"would be happy if any one could expand on this issue.
Thanks,
BMAN

Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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The hard part with MS is that is different for everyone.


Steve Orchard, Running from AS & MS
gbash #486336 03/28/13 03:49 PM
Joined: Jan 2010
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Thank you gbash for your detailed answer, i know what to watch out for now. I am truly so sorry to hear what's happened to you and I hope you're coping as well as possible with MS.

gbash #486338 03/28/13 04:34 PM
Joined: Feb 2012
Posts: 126
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Yikes!...Thanks for posting the details of what happened to you gbash,...Definitely means we shouldn't ignore side affect symptoms...And the need for us to be aware of the link to MS...These drugs can be incredibly helpful...but your situation just reminds me of the serious...albet rare...risks too.

I too had a reaction to Remicade, it permanently damaged my vestibular nerve, causing dizziness and loss of balance...It took me a long time to decide to try again, but I weighed out my quality of life which without the biologics was terrible, with the risks of taking a biologic....But listening to this thread is certainly giving me more to consider...It's tough, I know the Enbrel has helped me immensely, it seems to be controlling the inflammation right now...but do I want to try life again without it?...I know some on here would say yes...and do NSD as you have...Something I will be seriously considering.
Thanks again.


Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)

Joined: Nov 2002
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Addicted_to_AS_Kickin
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I think the risks of the drugs are just there and different for each one of us. Humira is the one that affected my heart immediately. Remicade did a number on me but it was slow in happening. After about 8 years of Imuran, I took it one day and immediately my head swelled up like a balloon. You can develop allergic reactions at any time.

Obviously, I haven't had a reaction they couldn't deal with. :o)


[Linked Image]

Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

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Addicted_to_AS_Kickin
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I submitted before I intended to. :o)

My personal thought is that knowing the devestation and destruction that these diseases can do, I certainly think they are worth trying.

I can't take them any more but I would in a heart beat. I am so sorry for all of you that ended up with MS. Would you also try it again?

Best wishes to each of you as you make the dread do I or don't I decision.

Possi


[Linked Image]

Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Joined: Oct 2012
Posts: 190
First_Degree_AS_Kicker
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I'm kind of badtripping over this lol.

I thought this was a very rare side effect. My rheumy says she has never seen a patient who developed MS from anti-tnf in her career.

But now there's a few people here who did?

This is scary. I'd hate to have to stop my Enbrel since I do so well on it.

Joined: Feb 2012
Posts: 126
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I understand, it is scary, but Possi is right the damage the disease does is awful...so we weigh out that risk...I don't think you have to stop taking your Enbrel but we all need to watch for symptoms.

I too am very thankful for what Enbrel has done for me.


Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)

Joined: Sep 2004
Posts: 433
Likes: 1
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bcho1971, Kineret may not be known to have MS as a side effect, but it also is not know to be highly effective for AS. "Your Milage May Vary", and it may work for you, but Kineret did not perform well in early clinical trials for AS.

Joined: Sep 2004
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Black_Belt_AS_Kicker
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Wilhelmm MS is a very rare side effect of biologics. A side effect that Orch, gbash, and jpinperth's relative experienced. Three positive responses on a message board with participants around the world seems pretty low to me. I am not trying to minimize what they have experienced; just pointing out that what they experienced is a known but rare complication.

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