Went to Dr. - results | Arthritis Information

 

Folks,

I just got back from the Rheumy.  Here are a few notes.  Again, the history is one visit to the GP, he called and said I have RA.  Then 1 visit with the Rheumy 2 weeks ago, she said it looks like RA, ordered blood tests and xrays.   So today:

- you do have RA.  Rheumatoid factor and anti-CCP tests were solidly positive.
- she would have prescribed MTX, the gold standard, what they start with for everybody, but.....

I am going into a research trial instead.  I am in San Diego, and my regular Dr. and everything is through UCSD medical center.  There is some new research in the medical school.  I don't yet know the details, but evidently they are testing some new advanced medications and comparing them to the known leading treatments.  Of course I don't know which treatment / medications will be selected for me -- double blind study.  That is why she didn't start the MTX, because I have to go into the trial completely clean of other things.  Cool thing is the attention / monitoring level will be high, and free of cost!  The Rheumy was very excited that I surfaced, because it is a new case, and the trial people really like that.

Some other stuff I learned:
- MTX is a build up dosage.  They start at a low level and then build it up every 4 weeks until some results are evident.  Can he 4-6 months before they get it right (yikes, I hate hearing that, like many others, i want immediate results  Hmmmm! ....... Some bad news and some good news by the looks of it.
I hope you do well in these studies that you have volunteered for.
well.. thank you Roland for participating so that so many others can benefit!

I wish you the best!!
Thanks for your helpful report - and best wishes on your participation in the trial!  Keep us posted on what you are permitted to divulge, at least if you have better days.

Roland, good luck with your trial! I would love to get into one, as I couldn't keep up my Cobra payments and am without insurance while waiting on Blue Cross to process the paperwork. I have looked and applied for one - you're lucky because they often require you be on MTX and I take Sulfasalazine and Plaquenil because I, ahem, like alcohol and you can't take that with MTX.

About the genetics - my brother has Lupus, extremely active Lupus I may add. Surprised he's still with us. May aunt has RA. Ask me and I think that's a pretty strong case for a genetic role.

As for the kids, my doc suggested not "flagging" them too early. Insurance companies do not like autoimmune diseases. She recommended yearly physicals instead, monitoring normal stuff for any signs.

Best wishes...Shannon,all,

Thanks for the best wishes.  Yeah, I am on COBRA also right now, a real pain and expensive.

I forgot to mention that this trial will require me to be on MTX.  That is the Dr. said that they will give MTX along with some of the other medicines.  I plan to learn everything I can about this trial.  For example, what is the ability to determine the effectiveness of a medicine when it is taken concurrently with MTX?  What is the "new fangled" medicine I will be taking, and what are the side effects, and how risky?

Right now it is still pretty bad, they prescribed Celebrex a couple of weeks ago.  But my insurance needed a "prior authorization", or so the Pharmacy tells me.  This has been in process now for about a week at the Dr's office, and I still don't have it.  So I am just taking Ibuprofen, which I am not supposed to be taking (potential stomach bleeding).  And so no RA medicine yet, and I get worried the disease is progressing, my knees seem to hurt a bit now, whereas they didn't last week or before.  Not sure, maybe it is just from walking funny.  And my jaw has a small ache, and my teeth don't meet in the same way that they always did.  Man!!  What the heck is going on.  That is why I am anxious to get on some RA specific medicine to hopefully slow this stuff down.

Roland

Thanks Roland, I am sure that most of us will be following your progress.
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