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AlwaysRosie
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Date Joined Jan 2005
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   Posted 11/30/2007 8:29 AM (GMT -7)   
How was your first appointment with the new rheumy???? Wasn't that Monday???

Blessings!

Post Edited By Moderator (Lynnwood) : 11/30/2007 1:54:59 PM (GMT-7)


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 11/30/2007 9:12 AM (GMT -7)   
Lynnwood, I know you might not find anyone as great as your old rheumy, but I hope you found another one who you like and is really good. Let us know how it went.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/30/2007 2:18 PM (GMT -7)   
Hey all,

Yes my appointment was Monday. I guess I haven't posted because I haven't settled down to having just one feeling about it.

I had everything summarized on one page, with meds, lab tests, dr notes from the last year appended. He said that he'd been seeing several of my previous doctors patients in the last couple of months, and found that in general we were all being treated more aggressively thank he would like, with a few more meds than he would like. Some of my anti-depressant & anti-anxiety meds were being prescribed by by former rheumy because my shrink disappeared and at the time I has too stressed to find another...new dr didn't like that and indicated he wouldn't be prescribing them, as it wasn't his area (that's ok w/me).

He asked questions (the basic 11 questions) and did a cursory evaluation of joint movement. Ordered a HUGE amount of tests so he can see for himself what is going on. I think that's the only responsible thing for a new dr to do, so far so good.

However, he went on to say that he doubted it was lupus. I don't agree that he'd looked at my history enough to know that, and think he was ahead of himself. I worry that because of my meds, the real problem won't show up because it *is* being managed by my meds. (Not that I wouldn't mind fewer, but I won't be pushed into dropping too much at once.) I trust he is keeping an open mind, otherwise I'll put myself in a tizzy worrying.

Also said lots of cases once you get the lupus dx everything becomes lupus. I suspect that is true for lots of cases, but I don't think he should have mentioned it without knowing my case better and seeing if it applied to me.

I'm not sure he really understood me when I tried to indicate I don't care about dx (except as it matters to disability insurance and future health insurance), and that I list ALL my symptoms not to claim they are lupus but so that he, the expert, can decide what is/isn't applicable. I DO care that my symptoms are treated/managed. I wasn't able to make these 2 points as cleanly to him as I just did above; I hope to make that plainer in my next appointment.

I defended the Cellcept, which he pretty specifically said he'd never use except for SERIOUS organ involvement, by saying my brain was worth more to me than any side effects could ever be. He asked me to come down the Cellcept a little, which I have no problem about as old rheumy & I were already starting to decrease it, and I've read it really shouldn't be used more than 18-24 months.

So, I'm to see him in a few weeks when my labs are back and the holiday/vacations are over. I need to give him 3-4 visits before deciding if he can really treat me in the manner I wish to be treated.

He may be one who goes more on labs than on symptoms -- that may not work for me.

Thanks for keeping up w/me,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/30/2007 9:18 PM (GMT -7)   
*sigh*

You really have a great attitude Lynnwood. You have a great way of looking at this. *sigh* I hope things DO work out well for you. I think you said it right . . . its hard to know, yet, what he's thinking. I hope you'll keep us posted as to how things progress. Your first rheumy saw you through some really difficult stuff and has it all simmered down now . . . I guess each one wants to see for himself what he is treating. I hope things go well for you with him. Its great that you've kept an open mind about it. Thanks for sharing . . . *sigh*

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 12/1/2007 7:40 AM (GMT -7)   
Lynnwood, I'm also impressed with how much of an open mind about this. I was reading what you wrote and found myself several times thinking "oh no", especially about the undiagnosing part and the not really getting the whole picture thing. I agree with you that if your labs turn out good it's because of the meds your old rheumy had you on. This guy does sound like he's a little more like someone who's going to look at labs first. I just hope he doesn't change too much too fast. I know that Cellcept has made a huge difference for you - that alone should say something to the rheumy about your diagnosis. I would think if you didn't have lupus you wouldn't have responded so well to Cellcept and to prednisone. My positive response to prednisone is one of the things that helped my rheumy diagnose me.

Maybe you'll get a better feel for this doc on your next visit. I know it's overwhelming, but if he's not a good fit for you, you might have to start a search for a new doc. I think it's a good idea to sit on this a little while and see how you like this guy.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/14/2007 10:44 AM (GMT -7)   
I just got the results of all 13 of the tests this new doctor ordered. It covered all possible lupus & sjogrens measures as well as some other arthritis type measures. EVERYTHING looked perfect. Even my blood glucose, which has been slightly over recommended for years.

Only slight deviations were extra RBC (over by .3%) & WBC (over by 3.1%, all were extra Neutrophils, range 1500-7800, mine were 11620).

So now I'm afraid he'll want to withdraw all meds -- but why do I get so bloody tired, have intermittent neuropoathy in hands/feet, and a fair amount of joint pain? And what the heck will this do to disability insurance & SSD?

We'll see what he says Jan 8th!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/14/2007 12:59 PM (GMT -7)   
Hi Lynnwood . . . *sigh*

I'm assuming that you have a folder of some of your past labs??? If not, maybe could round some up before the appointment.

I'm sure he knows that when you are taking an immuno-suppressant, and its doing its job, your anti-body titers will go down. Deep breath . . . I'm feeling for you . . . having to wait to see what lies ahead with him.

I had my second appointment yesterday. Most of my labs were perfect and the three that were off, were insignificant. He told me that while none of the blood work indicated lupus, it is only a "slice" of time and that a positive "slice" needs to be compared to other points in time and so do negatives . . . but I think both of us are convinced that my issues are not lupus (I've never had positive ANA or compliments). I suggested that since I don't have lupus, that I should discontinue the plaquenil. He reared back with both hands up and said NO! Don't stop the plaquenil . . . and then said "you DO have autoimmune issues". So he suggested that I continue with my current regimen of 600 mg plaquenil and the regular use of rx motrin and he gave me a rx for 3 medrol dose packs. He said to save the dose packs for next flare and to let him know right away how it works. He felt that this would be a better course than the med buffet I was on last year.

So . . . point is . . .while he is saying I don't have lupus he IS working with me to treat my symptoms. I KNOW in my heart of hearts, yours won't be able to take away your dx. You just have too much history and documentation.

When is your next SS review??

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/14/2007 1:51 PM (GMT -7)   
New doc already has 7 years of past labs....I've been waiting to get an appointment w/the judge for an SS hearing for 22-23 months now...will be hounding my attorney & everyone else I can find after the holidays...hopefully this guy will handle things the way your new doc has!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/14/2007 9:03 PM (GMT -7)   
AKKKKKK!!!! I'm SO sorry!! I FORGOT you are waiting for your SS award.

*Rosie shivers violently thinking about the emotional stress Lynnwod must undergo*

I hope you will accept a full pot of hot tea to comfort you while you wait!! You have my lemon/ginger blend and I must say it is the best!! Lynnwood . . . I hope you have a good mental system for guarding your energy from being robbed by worrying about this. It sounds paralyzing . . . although no benefit ever comes from worry . . . it is nonetheless difficult to avoid. Prayers and hugs for you!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/8/2008 10:14 PM (GMT -7)   
Well, I had my second visit with my new rheumy today. As I suspected at this "slice" of time, no lupus, ra, sjogren's, or anything else shows up in the intensive bloodwork he did.

So, he's thinking it has all been fibromyalgia. But, fortunately, is willing to write lupus/fibro overlap so as to not mess up whatever progress I'm making w/SSD.

We're doing a ramp down to finish off my Cellcept and Xanax within the next month.

He's recommended a sleep study (even though I don't snore or am that overweight - 170 & 5'5"), so I'll do that. Anything to sleep better and feel refreshed again! I've been using the Xanax & Trazodone for sleep, but last couple of months still haven't been sleeping well and am almost always tired. I'm sure the Trazodone is the next thing he'll want to get me off of! I certainly hope it's not sleep apnea, I can't imagine how I'd sleep w/a CPAP machine.

He mentioned Lyrica -- I expressed hesitation as it's relatively new. So we're not doing it (yet, I suspect it'll be tried after I get off some other meds).

I'll be reading/researching fibromyalgia & lyrica next....don't see him for 2 months.

I did get a referral to a back pain clinic for some PT for lower & mid back pain that has been increasing lately.

Change is in the air.....people are already asking how I feel about the change in dx. I don't really 'feel' much about it -- I do think there were some things going on, esp cognitively, that were out of range for fibro, and it doesn't explain a couple previous + ANA results....but I don't really care what the dx is -- as long as 1) symptoms are relived, and 2) I can either work or qualify for SSD, I'll be happy.

Politically speaking, I won't be telling anyone that it (might) now be fibro -- don't care for the stress of dealing w/people who "don't believe in" fibro! <Exp since I sorta' am a non-believer....>

So, that's my story of visit 2!
Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/9/2008 7:28 AM (GMT -7)   
Hmmm.... I hope the changes in meds go okay and that you do okay weaning off of Cellcept and Xanax. I know how much Cellcept has helped, so I hope you can go off of it without too many problems. Will you still be able to have Xanax around in case of anxiety attacks? I'm not sure what to think of your change in diagnosis - this stuff is always complicated. The thing that comes to mind is how well you respond to prednisone and prednisone usually makes fibro symptoms worse. The other thing is how well you responded to Cellcept. In my very humble layperson's opinion I would guess that your labs came back okay because your lupus was being treated with a combination of meds that worked well for you. I'm not trying to play doctor or anything - I'm just kind of thinking out loud (or writing out loud). But, you are right that the most important thing is that your symptoms are treated and that you are able to get relief from your symptoms. The sleep study sounds like a good idea.

I don't know much about Lyrica. When I first started having neuropathy, I was given the choice by my pcp to try neurontin or Lyrica because they were pretty similar in what they were supposed to do. I went with neurontin because it has been around longer and it comes in a cheaper generic form. I like the neurontin because it helps with sleep and helps with my neuropathy. I have read that Lyrica is the only approved med for fibro right now and that might be why your rheumy wants you to give it a try and it should help with sleep too.

Keep us posted on how things are going with weaning off your meds. You seem to be keeping a pretty open mind about this.
Take care
 
PS I almost forgot - I wanted to ask you how your symotoms have been and how you have been feeling.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Post Edited (hippimom2) : 1/9/2008 7:48:27 AM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/9/2008 8:43 AM (GMT -7)   
I have been feeling fairly well.

I've got a constant feeling of malaise/flu in most of my muscles and they don't have much endurance. My hands & feet hurt when the weather outside is cold, even if I'm inside and warm. Right hand is sore with mild use, and is a constant low ache -- not even quite into the pain scale. I've been working on lower my bad carb intake (bread/sugar/coke mainly) and getting back to regular walking. Walking or standing or certain chairs and my lower back or middle back goes into screaming pain at level 6 or 7.

Sleep sucks! Lots of trouble getting to sleep, and don't wake up for about 12 hours...sometimes, but rarely, feel rested. So I'm okay w/the sleep study, but haven't found anything that specifies what they would do if it was any problem except apnea.

I asked about prednisone, Barbara Lee told me it doesn't usually bother Fibro until over 20mg or so, but my highest has been 15 -- so I haven't had enough to define lupus vs fibro with prednisone.

The Cellcept did amazing things to that serious cognitive dysfunction I had -- we started lowering it last month and the brain still functions. My opinion is that it broke the flare or whatever was happening in my brain -- you aren't supposed to take it more than 1.5-2 yrs anyway, so it's time to get off. I haven't found any scientific evidence that says fibro gets cognitive dysfuntion that badly -- people say so, but....I don't know.

Maybe I am in lupus remission and the aches/pains are fibro? Who knows.

One friend from HW w/fibro suggested that the lupus/fibro overlap dx may actually be better for SSD. That would be nice, huh?

Thanks for you interest, hippimom!

PS. Yeah, I have some extra xanax stashed away for panic/anxiety attacks - Dr doesn't know I took some before seeing him! LOL.

Looks like the Lyrica is a more condensed version of neurontin -- costs more but don't have to take as much. It seems to be mainly for pain, and I guess I don't really consider my aches to be actual "pain". Maybe at a 1 level?

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 1/9/2008 8:58:21 AM (GMT-7)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/9/2008 10:45 AM (GMT -7)   
eyes confused eyes

O. . . K. . . .

I will just say that I love your attitude. I'm surprised that past records don't play a bigger role in this . . . and "if" the lupus is gone . . . Wooooo Hooooo . . . but . . . I don't think the prednisone would have been so much benefit if you didn't have something auto-immune going on besides fibro.

I hope the gradual changing of meds and sleep study give you great results and I am very interested in updates on all of this. Its a lot to take in . . . . sending you a whole pot of hot tea w/lemmon!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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