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Sjogrens Topics => Living With Sjogren's => Topic started by: YICKelly on June 03, 2008, 02:41:49 PM

Title: First appointment with my Rheumy!
Post by: YICKelly on June 03, 2008, 02:41:49 PM
Having just been DXed in March, having first Rheumy appointment is June isn't too bad.  I think I like him!  I told him I had been blessed with my doctors and he said "And now you are stuck with me!"  LOL  I really like a doctor that has a sense of humor!  He agreed fast that I have SjS, though he did say that my ANA was negative but both antibodies for SjS were positive and that was unusual.  I think he needs to read a few of these posts - everyones results are different.  He had half a dozen X-rays taken to see why I have lost 3 inches of my height.  He had about a dozen blood tests run.  He talked about a medicine that I know I have seen here, but I can not think of it now - it helps the overall achyness.  I just found it - Lyica!   He never mentioned a lip biopsy, is that only done if the DX is not clear?  I don't see him again for four months.  This seems a long time since he didn't start any meds.  Hopefully he will call when all the test results come back.  Hey - this lady got 4 tubes of blood the very first time!!! I could not believe it - remember my last blood test took 5 nurses/techs and 2 hours to get a half tube.  Well, for a first visit I was happy.  Hopefully I have found a good one!
Title: Re: First appointment with my Rheumy!
Post by: eyeamdry on June 03, 2008, 04:38:48 PM
This sounds like a good first time visit to a rheumy!  I think as long as your antibodies are positive, that's proof enough.  Whatever you do, don't offer yourself up for a lip biopsy "just because."  Too many of us have had problems with it.  The results can be subjective and argued anyhow.  I've also just been given Lyrica. 

Your doctor may well call you when the rest of your bloodwork comes in.  Also, I think rheumys like x-rays!  Mine doc has a bone clinic too, so I think they just like to get all of you they can.  My rheumy also x-rayed the heck out of me.  This can be for future comparison purposes, also.  I'm glad your visit went as well as it did.  Losing 3 inches is another story.  My doc says I've lost 2 inches and I just say "no I haven't."  He says I'm 5' and I say I'm still 5'2".  Lucy
Title: Re: First appointment with my Rheumy!
Post by: Scottietottie on June 03, 2008, 05:03:33 PM
Hi Kelly   :)

Your rheumy sounds very hopeful. I like docs with a sense of humour too. It'll be interesting to see how the Lyrica goes. You can always ask him about Plaquenil the next time you see him. (If he doesn't contact you) You can ask his opinion and tell him him you've been reading up about things since his dx.  ;)

Take care - Scottie  :)
Title: Re: First appointment with my Rheumy!
Post by: ktfabian on June 03, 2008, 05:51:52 PM
Hi Kelly,

I'm glad to hear your first rheumy visit went so well.  He sounds like a keeper. 

I was diagnosed with Sjs in 2001 based only on the Schirmer test (I doubt I'm spelling that right) - that's the one where they put the little papers in your eyes to see how much tears you produce.

After that, my rheumatologist at the time did the blood work and there was enough there to confirm the eye doctor's diagnosis.  I say my rheumatologist at the time because she never really seemed able to get on top of the problems I was having. 

I found out about a specialist in Philadelphia, PA and have been going to him ever since.  He also accepted the diagnosis without ever doing a lip biopsy.  From what I've read, I got off rather easy on that.

I'm glad you've got a good rheumatologist, and we're all here to help answer any questions we can,
Tracy
Title: Re: First appointment with my Rheumy!
Post by: YICKelly on June 03, 2008, 06:18:31 PM
Thanks.  Don't worry, I have NO plans on mentioning a lip biopsy if he doesn't!!!  I will keep you posted as to when and if his office gets in touch with me.  I have already told him about you guys.  He mentioned another site.  So at least he is not completely adverse to my reading about SjS.
Title: Re: First appointment with my Rheumy!
Post by: Patze on June 04, 2008, 05:36:31 AM
Hi Kelly,

Glad to hear that your rheumy has a sense of humor!  That is so good, lucky you!  Can you believe it took two years of seeing mine before I started to feel remotely like a patient and less like I'm wasting his time? 

Lots of xrays, eh?  Nope, mine has never ordered any; is that standard for SJS?

And good luck with the Lyrica! 

Take care -

Patze
Title: Re: First appointment with my Rheumy!
Post by: Linda196 on June 04, 2008, 05:57:40 AM
SjS is essentially a "soft tissue" disease, so x-rays aren't standard for it, but there are so many "co-diseases" that would show up on x-ray (RA, degenerative arthritis, spondylopathies, lung involvement), I'm thinking that a rheumy on a first visit is trying to get an overall picture of your condition...extra points for thoroughness!
Title: Re: First appointment with my Rheumy!
Post by: YICKelly on June 04, 2008, 08:12:38 AM
Yes, I think he earned points!  The xrays are to see if I have fractures in my spine - which could account for the 3 inches lost.  I think part of it is just that I can not stand straight anymore.   He is a Musculoskeletal Medical Specialists - is this what all Rhuemys are or is his speciality different?
Title: Re: First appointment with my Rheumy!
Post by: Skylar on June 04, 2008, 12:22:20 PM
Hi Kelly, I'm so glad your appointment went well. It looks like you found a good rheumy.

Skylar
Title: Re: First appointment with my Rheumy!
Post by: mindytyson3 on January 16, 2013, 08:47:30 PM
Having just been DXed in March, having first Rheumy appointment is June isn't too bad.  I think I like him!  I told him I had been blessed with my doctors and he said "And now you are stuck with me!"  LOL  I really like a doctor that has a sense of humor!  He agreed fast that I have SjS, though he did say that my ANA was negative but both antibodies for SjS were positive and that was unusual.  I think he needs to read a few of these posts - everyones results are different.  He had half a dozen X-rays taken to see why I have lost 3 inches of my height.  He had about a dozen blood tests run.  He talked about a medicine that I know I have seen here, but I can not think of it now - it helps the overall achyness.  I just found it - Lyica!   He never mentioned a lip biopsy, is that only done if the DX is not clear?  I don't see him again for four months.  This seems a long time since he didn't start any meds.  Hopefully he will call when all the test results come back.  Hey - this lady got 4 tubes of blood the very first time!!! I could not believe it - remember my last blood test took 5 nurses/techs and 2 hours to get a half tube.  Well, for a first visit I was happy.  Hopefully I have found a good one!

I have been on Lyrica now Monday will be 2 weeks and its not working. I can't tell a difference but its only 75 mg so probably not enough to help.
Title: Re: First appointment with my Rheumy!
Post by: eyeamdry on January 16, 2013, 09:43:23 PM
Just as a FYI, I take 100 mg Lyrica 3 x a day.  It does help me, but it's expensive and doesn't last long.
Title: Re: First appointment with my Rheumy!
Post by: mindytyson3 on January 17, 2013, 06:56:41 AM
Just as a FYI, I take 100 mg Lyrica 3 x a day.  It does help me, but it's expensive and doesn't last long.

Ok thanks. I am going to give it until Monday and I will call them and let them know if its working or not. I hope it starts working but like I said I might need a high dosage not sure. Maybe I need the 100 mg 3 x a day. :)