Posted 12/14/2007 12:44 PM (GMT -6)
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

Posted 12/14/2007 2:59 PM (GMT -6)
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

Posted 12/14/2007 3:51 PM (GMT -6)
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

Posted 12/14/2007 11:03 PM (GMT -6)
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

Posted 1/9/2008 12:14 AM (GMT -6)
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

Posted 1/9/2008 9:28 AM (GMT -6)
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

 

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

Posted 1/9/2008 10:43 AM (GMT -6)
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)

Posted 1/9/2008 12:45 PM (GMT -6)
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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