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#471438 - 06/08/12 09:14 PM Re: Level of expectation? [Re: ewoodct]
Winter Offline
Third_Degree_AS_Kicker

Registered: 12/01/10
Posts: 262
Sorry you are struggling too with being a Mom and dealing with this disease. I am too in my 30s with a 6 year old. I take a lot of meds but still have difficulty driving, doing crafts, sitting, standing, etc.. I am still fighting the disease with diet, exercise, modifying my lifestyle, meds, etc... I wish I could feel no pain and be able to be active with my child all day. Found biologics to help the most. My pain didn't go all away but I was able to be active most of the day with minimal pain. Going down that road again soon because I want more quality of life.
_________________________
Meds: injectable MTX, Simponi, daily hydrocortisone, pain meds, NSAIDs, Methylprednisone for flare ups, Armour thyroid

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#471453 - 06/09/12 09:33 AM Re: Level of expectation? [Re: millford]
gbash Offline
Decorated_AS_Kicker

Registered: 10/09/08
Posts: 725
Loc: Oklahoma
Quote:
You have mentioned several times that you got MS from Enbrel. If you don't mind me asking, do you now live with progressive MS, or was it "temporary" medicine induced demyelination?


I had hoped that the MS was a one-time event (clinically isolated syndrome), but I had a bad relapse a few weeks ago. So, I have relapsing-remitting MS. My nerve damage kept geting worse over the first three months of the disease (two years ago), but since then it has slowly improved. I have recovered most of my upper body strength and a fair amount of my lower body strength. I still have extra sensitivity to light and sound, but not quite as bad now.
_________________________
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Now getting good results with no-starch diet.

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#471455 - 06/09/12 10:19 AM Re: Level of expectation? [Re: gbash]
millford Offline
Member

Registered: 01/18/11
Posts: 28
Loc: Copenhagen, Denmark
I'm really sorry to hear that. Hope this is the last you'll see of it. Thank you for your answer. I'm about to start a biologic, and like most, am worried about potential side-effects.

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#471458 - 06/09/12 01:10 PM Re: Level of expectation? [Re: millford]
ineptwill Offline
Titanium_AS_Kicker

Registered: 03/31/02
Posts: 4981
you just beat Holland 1 Nil........yay....

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#471480 - 06/09/12 10:19 PM Re: Level of expectation? [Re: ewoodct]
ewoodct Offline
New_Member

Registered: 08/14/09
Posts: 4
Loc: CT
Thank you everyone for your responses. I think I really do need to fight for more, I just know there are people so much worse than me, it almost feels like I don't deserve the good stuff, lol. I've been on so many NSAIDS, and none really give me the relief I need. I told my 5 yr old the other day we couldn't go bike riding ( still need to hold the bike for him) because I was ouchy. He replied, "but you're always ouchy." It hurts to hear that kind of stuff. It's too bad I can't take sulfa, that worked really well until the deadly allergic reaction. smile Well, thank you again; it's good to know there are people who get what I'm going through.

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