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Old 10-12-2003, 09:43 PM   #1
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Location: Georgia USA
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lbwp HB User
Post Seronegative RA

Hi,

About a yr. ago, I started getting pain/inflam./stiffness in my hands,fingers,wrists to the point where I couldn't hold a pen to write a check, couldn't peel vegs., couldn't hold a toothbrush,couldn't open jars, hard to turn steering wheel on my veh.etc. I thought it was due to physical strain of handling/raising my twin babies. After seeing an othopedic/Neurologist/& now Rheumatologist, I have no blood markers for RA-though I have more than 4 symptoms for a RA diagnosis, the Dr. can't say for 100% sure. I am told this is called Seronegative RA. The Neurologist who was testing me for carpel tunnel(neg.)prescribed a one wk. prednisone pkg. as a test- 6,5,4,3,2,1 & the 1st daily dose cured me & I felt wonderfully pain & inflam. free for a few day's & then the pain came back as the dosage got small. I am in a lot of pain & none of the NSAIDS (800 Ibuprofin,Vioxx,Bextra,Celebrex,Diclofin ac)have worked for me, only the prednisone. My Rheumatologist say's prednisone is not an option for me. He won't prescribe it as he say's it can't be taken. He say's I need to now try MTX inj. I am scared for my life & feel like the stress is going to bring back once had long ago panic attacks. Not fun! I also have 2 little blessings (15mo. b/g twins) that need me to be strong & happy. Right now I am weak, miserable, & angry.

Questions:
Why this choice of MTX drug when there are so many others available?
Are all the meds available for treating RA toxic?
How long does one have to be off of MTX b-4 having an alcoholic drink to be OK? In other words-If I have a planned vacation or special occaision, could I go off MTX in order to drink & then go back on it afterwards?
How long b-4/after to be OK?
Can you not drink alcohol w/ALL the RA meds available?
How long does one have to be off of MTX to be able to try to get pregnant?
Does this have to be done w/ALL available RA meds?
Does having RA shorten your life span if the meds. are keeping it in remission?
Does taking these drugs shorten the life span?
Do you have to stay on these drugs for the rest of your life alway's & forever?
How do you know if the RA has gone away or into a long term remission?

Thanks for any info. you can offer.

lbwp

 
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Old 10-20-2003, 04:08 AM   #2
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AussieChick HB User
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Hello again, i've just put the puzzle pieces together and realised you're the same person i'm writing to who's started mtx. I have had RA since May which is mainly in my fingers and wrists. Initially my rheumy told me it was virul arthritis and would go between 3 - 12 months. My bloods are also clear (sero neg) but she seems sure that after such a great response to prednis, and such a bad repeated attack when i went off it, that it is RA and here to stay. Less toxic sulphur based drugs like salazopyrin were tried first and i felt great for a couple of months but then i reacted badly with heart palpatations, burning skin and severe mouth and throat sores. She considered Arava but the mortality rate i read on the net was disturbing and she said it often had a short impact anyway. So here i am on MTX, beginning at 7.5mg plus folic acid. Australia does not yet have drugs such as Enbrel or Renecade available except in exceptional cases requiring ok by the health minister - how backward - or you can fund it at $20 - 40,000 per year. So i'm really relying on mtx to work.I have asked many of your questions to my rheumy too. She told me drinking is ok, 2 glasses a day or a few more would be okay occasionally if consumed 5-6 days after the meds. liver tests will monitor monthly. I was horrified to find out RA can reduce our life span, always saying well it could be worse, i won't die from it. Well i'm told mtx is a disease modifying drug so therefore should help us here if diagnosed early enough. She plans to keep me on this drug if it's working for me for two years and then will withdraw to see if i've gone into remission - here's hoping. She has frequently warned against getting pregnant though so take extreme care here. I have an eight year old girl and five year old boy so that suits me fine. I have also felt miserable and angry in spurts. i think it's a combination of being in pain, accepting we have a disease with no cure, frustration that we can't do things as fast or as easily, feeling old (I'm 35!!) and possibly even the prednis making us go crazy!!?? I'm fine until there is a hiccup then i cry and tantrum and the more i read on the net, the more depressed i get. Then i shake myself off and get on with it. I'm coming to terms with it now and am getting over the why me crap particularly the more you read of others who are suffering for no known reason...but i don't need anymore hurdles. You have a busy workload with twin bubs, very unfair timing, so i wish you all the best in your management plan.
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Old 10-21-2003, 03:39 PM   #3
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Location: OR
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gram24 HB User
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Hi..have any of you tried checking into the website: [url="http://www.arthritisinsight.com"]www.arthritisinsight.com[/url] ? That is a very informative website with lots of info on our arthritis meds plus on the ra and various other arthritis's. They also have a chat room with other arthritis sufferers. I'm also on mtx. I couldn't take the pills and had to go to the shots. I about chased myself all over the house trying to give that first shot! Now, it's a breeze. Also, my rheumie suggested I NOT take the folic acid until the next day after taking mtx. It lessens the effects of the mtx. I had some problems with the shots too, but not as bad as the pills. Now, I take half the shot and then the remainder in 12 hrs. For me, anyway, that works. Good luck in finding more info on your meds and arthritis. The more informed we are, the more we can role with this disease and also fight it! gram24

 
Old 10-22-2003, 01:43 PM   #4
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Join Date: Oct 2003
Location: California
Posts: 5
karen1966 HB User
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Hi, I'm new to this message board.
I started having swelling and pain in both hands and in my hips and neck. The first MD I saw did blood work and called it osteoarthritis cuz negative blood results. My pain has become increasely worse. My new primary MD did more blood work it was still neg. but he didn't rule out RA because he can actually see the deformation in my hands and how the have gotten worse over the last year. He started me on sulfasalazine an older RA med which has been of limited help.

I don't know what's to come next. I am 37 y/o and just got my hair back after chemo (diagnosed with breast cancer 2 years ago this month).
I have no kids because of a bowel obstruction at age 21 that caused major inflammation and damaged my tubes scarred my uterus. My 30th b-day was in the hospital with a hysterectomy.

Sorry I am whining. I just needed to vent and talk to others that also have had to overcome some of lifes unfair moments.
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Old 10-26-2003, 05:36 PM   #5
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madamkitty HB User
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Ok, here's the scoop I read about MTX. It's been shown that people with RA die 10 years before normal.RA is also linked to an increased risk of heart disease. Scientists believe people with RA have shorter lifespans partly because of the increased chances of getting heart disease and dying from that. A study ot th University of Kansas School of Medicine found that patients on MTX were less likely to die prematurely than those not getting the drug. MTX works by switching off the underlying inflammation caused by the immune response. I've copied this straight from the article. Hope it helps.

 
Old 10-26-2003, 05:46 PM   #6
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Join Date: Jun 2003
Location: Woodruff,S.C.,U.S.A.
Posts: 64
madamkitty HB User
Post

Ok, here's the scoop I read about MTX. It's been shown that people with RA die 10 years before normal.RA is also linked to an increased risk of heart disease. Scientists believe people with RA have shorter lifespans partly because of the increased chances of getting heart disease and dying from that. A study ot th University of Kansas School of Medicine found that patients on MTX were less likely to die prematurely than those not getting the drug. MTX works by switching off the underlying inflammation caused by the immune response. I've copied this straight from the article. Hope it helps.

 
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