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Cindyss
Posted Wednesday, November 07, 2007 9:49 AM


 

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Last Login: Tuesday, February 23, 2010 10:12 PM
Posts: 625, Visits: 501
I saw that there is a question about your treatment because you are RA neg. Have you been tested for the CCP antibody? It is being used now to determine Dx for RA since many people don't test positive for the RA antibody. I was RA neg but my anti CCP is throught the roof confirming my Dx. Also recently had wrist MRIs and the obvious synovitis and damage that did not show up on x-ray also confirmed RA. My dr was starting to question herself since I wasn't responding to treatment and x-rays did not show many errosions even though wrists have been swollen for 2 years. MRI showed many errosions since it looks at all angles as well as the synovitis. Cindy
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Annaart
Posted Wednesday, November 07, 2007 10:54 AM


 

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Last Login: Wednesday, March 17, 2010 2:48 PM
Posts: 2,156, Visits: 1,060
Cindy, thanks for your concern. Unfortunately, all my bloodwork is normal and that is unfortunately for others pretty common. I think maybe 15 to 20%. I did not get diagnosed until I had damage on x-rays and MRI's and my ankles got really swollen. This idiot told me it was menopause.

I mentioned RA negative because I read some research that indicates people who are negative for the RA factor do not do as well on Rituxin as people who are positive. So I don't want to try it and wait 6 months with accumlating damage unless this new research indicates differently.

You are right too that the obvious synovitis doesn't show up on x-rays, to bad I didn't know that while trying to get a diagnosis or I would have demanded an MRI.

It turns out that I have AS (ankylosing Spondylitis) with RA symtoms (smaller joints), where all people are negative for the RA factor because we have AS instead.

Anyway, back to work. Thanks.

Anna
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Karla77
Posted Wednesday, November 07, 2007 11:08 AM


 

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Last Login: Thursday, July 31, 2008 1:01 PM
Posts: 71, Visits: 0
Hey Anna...

How does your garden grow?? j/k. I've got the winter garden in and it's coming up nicely. can't wait for my lettuce and greens. Got the garlic and onions in too. and my broccoli and cabbage is looking great. I tried not to go overboard for the winter like I did this summer....

I see you mention you have AS here is a great website if you didn't know about it already. I'm a memeber there as well. I joined up w/ them before I even knew exactly what I have and sometimes I wonder if what I have is just RA. Treatments are pretty much the same but I do have a postitive RA factor so I guess it must be that. What puzzles me though is I keep getting told that RA does not effect your back so why am I having sooo much back and neck trouble as well. Either RA does attack there too or I have something along w/ it. Anyway... thought you might like to check this out. They are a nice bunch of people.

www.kickas.org

Hope your doing well. Missed you...

Karla
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Annaart
Posted Wednesday, November 07, 2007 12:31 PM


 

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Last Login: Wednesday, March 17, 2010 2:48 PM
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Karla, I think you can have a mixture of both, as my back isn't near as bad as periferal joints which is closer to RA. I haven't been to that site recently, so thanks for the reminder. I believe there are many variations of the inflammatory arthritis's with all the new gene research hopefully we'll get pegged better.

Its too cold here for everything except garlic but I bought a mini greenhouse which is growing spinich and swiss chard (they can take a little cold). Its so small and cute the neighbors have been asking me what it is. I say it a tent for when my husband is bad and then I add "except I end up of there" haha.

Anna
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Cindyss
Posted Wednesday, November 07, 2007 1:02 PM


 

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Last Login: Tuesday, February 23, 2010 10:12 PM
Posts: 625, Visits: 501
Anna- sorry, I didn't know you had already been tested for both factors. If it makes you feel any better I had to see 7 drs who patted me on the head and wanted me to see a shrink while I was becoming so disabled I was bedridden. Only because of a dr who was a family friend did I get tested for anything and then she called the rheumy and begged her to see me. I have been on max doses of humira and remicade, have been on pred and MTX for 20 months plus plaquanil. I think she's trying retuxan as a last resort and no it's not doing a lot yet. My dr continues to test me for a variety of autoimmune disorders every couple of months because of my lack of response to treatment. I am greatful that she is willing to look at everything and is not afraid to change course based on the latest research. I hope you get some answers soon. You could also ask if your dr holds fast to the 6 month wait of if you could get it sooner. I did and many others on the board have too. Also could look at some of the newer dosing posted by Judy.

I didn't get a winter garden in. I do have a big herb garden with rosemary, st johns wort, basil, chives, oregano and parsley. Cold weather veggies go in in January hear so just a 2 month wait. I also have a couple a blueberry bushes that I bought 2 years ago to give me something to do after I lost my husband. I put them in huge pots and just water them and I have gotten tons of blueberries. I try to do one new plant each year just for fun. I also plant one flower each year that's native to South Africa which is where my DH was from. Cindy
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Annaart
Posted Wednesday, November 07, 2007 3:51 PM


 

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Last Login: Wednesday, March 17, 2010 2:48 PM
Posts: 2,156, Visits: 1,060
Cindy, I planted blueberry bushes too. I got a lot the second year, but this year the birds were guarding them and I forgot to cover before they were ripe. They beat me to it.

Humira worked fabulous for me. So I can't complain. It just didn't keep working.

There are a certain group of people who develop antibodies to the TNF's. That means your body fights them which makes them stop working. All a part of body fighting body. I wish I had started MTX from the beginning instead of being afraid of it. MTX prevents at least for awhile your body from fighting the meds.

I go to the Hospital for Special Surgery in NYC. They are fabulous.

How did I finally get diagnosed? Went to a semi retired Rheumy who had "seen everything". He said as I walked in the door (by my walk), "you have AS now lets treat it."

Anna
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Judy_smile37
Posted Wednesday, November 07, 2007 8:30 PM


 

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Last Login: Tuesday, March 16, 2010 9:34 PM
Posts: 1,577, Visits: 896
Karla,

RA definately affects the spine. usually the neck, but really it can attack any joint.

Judy

Start 1989, DX RA 1994 On Rituxan, plaquenil, mobic, minocycline- In remission.
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