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laney

Posted Wednesday, August 06, 2008 4:34 PM

Group: Forum Members
Last Login: Monday, October 05, 2009 5:48 PM
Posts: 22, Visits: 72

My name is Laura and I need support!!!! My Dr. tells me he thinks I have RA. 5 years ago it was Lupus and then Fibro!! I am confused!! I know it isn't easy to diagnose, but I don't know what else to do. My blood test and all over the place. I almost always have pos ANA. My ESR is usually normal but recently was 32. And my WBC was 14. I always thought it was low for Lupus, what about RA? I never had a pos RF factor. I had a MRI on my hands and there was no damage, but it showed inflammation. My fingers, wrist and toes are the worse. My hands are so swollen that I can't make a fist. My middle to toes feel like they are burning. My muscles feel weak. I was walking down a stairway and I felt like my quads couldn't support my weight. My legs wanted to give out. They didn't hurt, just weak. I already had carpal tunnel surgery on both hands. And.... I get horrible headaches!! I told my DR that the top of my neck (base of my skull) felt full. Like my neck was swollen and stiff. I feel like it really needs popped, although none of my joints ever pop.

I feel like I have no one in my corner. I don't have insurance and have to use a clinic. I have left 4 messages with Rheumy in 2 weeks and don't get a call back. I can't find a new one, cause I don't have insurance!!!!! My family and friends don't understand. They can't understand why out of 8 kids, I am the only one with a problem.

I take 12 pills a day. I have been on Plaquenil for 4 months and it hasn't worked. I took 2 steriod packs. I tried sulfasalizine, but had horrible stomach problems and severe migraine type headache. My liver gets extremely irritated from drugs, so I can only take ibprophen for awhile and then I am banned. My DR. wants me to consider Humira or Enbrel. Why should I take something that strong if he doesn't even know for sure if it is RA. Not to mention, my BF and I are thinking about getting married and he has good insurance. I know that sounds like a good thing, but everything is pre-existing and wouldn't be covered for a year. I DON'T KNOW WHAT TO DO!!! Crying

Oh, I work as a dental assistant....and I can't even tell you how hard that is getting. Somedays my gloves are sooooo tight.

I have been fighting depression for 13 years. I often get the feeling that none of this is worth the fight. Around every corner is another brick wall!!!! I take anti-depressants and have a therapist, but I feel like that isn't enough. There is no medication to make all of this go away. I just don't know how to cope.

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starshine

Posted Friday, August 08, 2008 3:23 AM

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Last Login: Thursday, November 12, 2009 11:40 PM
Posts: 660, Visits: 603

Hi Laney, welcome to AF. You seem pretty stressed. When I first got sick the diagnosis wasn't clear either. It was between Lupus and RA. the doctor finally settled on RA after 2 years because no other symptoms of Lupus presented other than joint pain and fatigue. I also am the only one in my family with RA other than an aunt. If I were you, I would try the Enbrel or Humira. Smile

Go to RA Connect and post there. It is more active and you will find a lot of support. Good luck and hope to see you there. ss

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Grandpavan

Posted Tuesday, August 12, 2008 3:06 PM

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Last Login: Today @ 4:59 PM
Posts: 4,499, Visits: 3,618

Laura, in principle you have picked the right forum but in practice everyone posts on the Rheumatoid Arthritis forum. It is just by chance that I came upon your post. The treatment can be very similar for RA and Lupus. Fibro is different but many people have more than one autoimmune disease so many have both Fibro and RA or Fibro and Lupus, or even all three. You say you took two steroid packs but you don't say how they worked. If they gave temporaty relief it is likely that you have some type of inflammatory problem. I think that is more reliable as an indication than the blood work is. Many things can affect the WBC so I wouldn't be concerned about that. The inflammation seen on the MRI tells me you have some type of inflammatory disease like RA or Lupus so some treatment that would work for either is very much in order.

I agree with your doctor that Humira or Enbrel would be very much in order. I take Remicade that is similar and it works well for me. I also take Methotrexate. We are all so different that it is not possible to learn much by comparing ourselves to others. However, by considering a great many people we can find what on average works well, and what works for a few but not for others. It takes trial and error to see what works for you. It is very frustrating but most people find some way to get their autoimmune diseases under control.

I'm not medically trained but I have read a lot from message boards and elsewhere. Please use what I say as suggestions for things to talk over with your doctor. I hope to hear from you again and God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter. Doing well on Methotrexate and Remicade.

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Ed Male

Posted Tuesday, December 02, 2008 4:52 AM

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Last Login: Friday, January 02, 2009 5:30 AM
Posts: 8, Visits: 30

Hello, I've had Ra for about 3-4 yrs, prob. longer. I take enbrel. Enbrel and my Dr. says only will help you for about a year after that your system will need more so then you more up to two shots a week. Thats what I'm on now , after that you will have to find something else. I'm also on alot of meds but make sure you take folic acid and calcium. Good Luck.

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