City / Stacey

[Guest guest]

Stacey, perhaps you should consider a second opinion.

As a pointed out a few days ago, getting the correct diagnosis isn't

always easy and having both RA and lupus, unless you are talking about

an overlap syndrome, is uncommon.

Not only that, but, if it is lupus, Humira (adalimumab) may not be a

good choice for treatment. Although it is being studied, treatment of

lupus with the anti-TNF biologics is controversial. Some researchers and

rheumatologists worry that the TNF blockers may exacerbate lupus.

Did any of your physicians do any tests for lupus more specific than the

ANA such as anti-Sm or anti-dsDNA?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: Another new one!

>

>

>

> Hi , Larry, Nea and all other newbies!!

>

> I, too am new to this group and have been busy reading all of the

> posts, advice and recipies. It is so wonderful to realize that I am

> not alone in this!!

>

> I am recently diagnosed with RA and Lupus. I was told by a

> chiropractor a couple of years ago that I had FM, and then about 4

> months ago I started having INCREDIBLE amounts of pain. At the same

> time, I had some blood tests following surgery that had a positive

> ANA result.

>

> At the time, the dr. told me that it was normal for that to be high

> after my type of surgery, and come back in a month to get retested.

> If it was still positive, then they would send me to a rheumy. The

> next day I called and made an appointment with a rhuemy. Good thing

> I did - as it takes 6-8 weeks to get an initial appointment.

>

> A few weeks away from the appointment, I was in so much pain, I

> couldn't even hold a folder of papers in my hands without it hurting

> me. I went to the GP and did blood tests for Lymes, 5th disease,

> ANA, thyroid, and a bunch of other things I can't remember. And I

> got some Vicoden.

>

> The thyroid was high, so went to an endocrinolgist. No thyroid

> problems he said. In the parking lot, I broke down in tears to my

> husband saying, " the next person who tells me they don't know what's

> wrong with me, I am going to stand up on their desk and start

> screaming. "

>

> The 1st appt with the rheumy I was armed with the blood test

> results. She first said, hypothyroid, and " non-specific connective

> tissue disease " . I started on plaquenil and prednisone. The

> prednisone helped for a while, but then I developed SEVERE

> photosensitivity and broke out into a terrible rash wherever I was

> exposed to the sun.

>

> Back to the rheumy - Now she says... " You're a lupus lady " . Stop the

> plaquenil, ramp down on the prednisone and start Imuran. Needless to

> say - none of it was helping with the pain. At this point I was

> still working 50 hours a week at a very stressful job managing

> millions of dollars.

>

> Next visit , Oct 7th was told - you have RA with lupus

> characterisitics. Stop the Imuran and start injecting Humira. At

> that point she wanted me to take time off of work, but being the over

> achiever that I am - I said no and toughed it out for two more weeks

> at which point I was in so much pain - I have no idea how I managed

> to even get out of bed, much less to work.

>

> I now am going into my 5th week off of work. Rheumy has me out for 8

> weeks then will re-evaluate to see if I can go back to work. I just

> had my 4th injection of Humira this morning, and I am wondering when

> I will begin to get some releif from all the pain. I am still

> popping the Vicoden (maybe one a day) - less than I was taking while

> working. I don't have to tell you guys where it hurts....EVERYWHERE!!

>

> It's like someone is stabbing a fork into the back of my hand and

> then dragging it down to my fingers thru all the joints and tendons.

> Ice picks in my knees, hips, ankles and even toes. (Don't even get

> me started about the fatigue).

>

> You all are right about people not really understanding about what we

> are going thru. I don't think it's that they don't want to

> understand, I just think that they can't if they are not experiencing

> this. My dear husband is doing his best to understand and be

> compassionate - he opens every bottle or can, cuts up all veggies or

> meat to be cooked, and is definitely in charge of browning ground

> beef - which is very painful with all the stirring.

>

> My new goals are to take a shower, get dressed and cook dinner. And

> on somedays that can be quite the battle. I have been lurking for a

> couple of weeks now and wanted to thank you all for the articles and

> posts. You have helped me a great deal. Sorry this is so long, but

> I am working on opening up to others and to allow myself to be helped

> and supported.

>

> Thanks again!!

> Stacey