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BonusMom
03-05-2009, 09:46 PM
I was "officially" diagnosed with SLE and secondary Sjogren's on December 18th. My doctor gave me a prescription for a titered dose of Plaquenil, which I was to begin after a colonoscopy on New Year's Eve (what a way to ring in the new year, eh?!).

I started the Plaquenil on Jan. 9 and was up to the 400 mg per day on January 21. Today was my first follow up appt since the diagnosis. Because I have noticed no improvement, she is going to start me on Prednisone 10 mg daily and told me to stop the Plaquenil immediately.

She advised that we had three RX options: Prednisone, Cell Cept and doxycycline.

I have to go have labs drawn tomorrow a.m. for CRP-inflammatory, ESR and Cortisol (AM is what it states, however, she might just want the labs taken in the morning?). The rheumy said that she wants the testing prior to starting the Prednisone so she can monitor the Cortisol levels because if they get too low they will have to treat that too.

I haven't heard anything about Prednisone affecting cortisol levels--anyone know anything about that? 10 mg of Prednisone is a low dose, right? I'll have to search the posts for Prednisone information. Oh, has anyone else not had success with Plaquenil? I thought it was the "gold standard" and most people (unless allergic) did well on it?????

I'm exhausted now, after five hours of driving. The wonderful thing---my rheumy spent 45 mins with me, so I really felt like she listened and offered good feedback. We have a telephone conference call scheduled for next Friday so she can see how I'm doing on the Prednisone and then follow up in her office in two months.

Oh--and she mentioned a CD by Elaine Alexander from the Sjogren's Syndrome Foundation website on brain fog as I'm really struggling with comprehension and memory issues.

Thanks for your input.

sick n tired
03-05-2009, 09:55 PM
Hey Bonusmom,

That was great that you had such a good appt. How satisfying to finally have someone to listen. I don't know much about prednisone except that it is the gold standard...Cortisol has to do with your adrenals. Each time we take prednisone, we put ourselves in the adrenaline mode. I believe it tells the adrenals not to work and they can actually stop working. That is why we are never to stop prednisone cold turkey out adrenals won't be ready to get back into action. anyway...that is th extent of my knowlege...I am just happy that you had a good appt. Was Hubby able to go with you this time or did he have to work?

Hugs,

Karen

BonusMom
03-05-2009, 10:50 PM
Thanks for the education on the adrenals, SNT. I haven't done any research and posted as soon as I got home because I know I can depend on forum members to share their knowledge and experience, which is often times more valuable than just a scientific website :)

Was alone for the drive to San Francisco, but was thankful it wasn't raining this afternoon like it was this morning. I was tempted to stay in the City and do some retail therapy and dinner at one of my favorite seafood restaurants, but I was back on the road by 3:00, missing the heaviest of the traffic, so I thought I'd better just go on home. Perhaps I'll partake after my next appt. which is Cinco de Mayo. Margaritas anyone?

mountaindreamer
03-06-2009, 05:57 AM
hi bonus mom,

cinco de mayo....oh the memories of tequilla ice sculptures....then no memory at all.

I was surprised that you were taken off plaquenil so quickly. It is my understanding that it takes up to 6 months to work....i am still waiting. I don't know much about the dosage of prednisone, but i believe that 10 mg is still within the "below side effects" dosage....i hope so.

sorry i can't be more help, and i am sorry that you were not able to get some shopping therapy....it is so good for the soul.

phyllis