Weird appt with my rheumy - what to believe?

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/1/2010 3:21 PM (GMT -7)   
I've been having a lupus flare for a while now, at least that's what my rheumy said in October. He increased my prednisone and put me on plaquenil.

I'm not really feeling any different right now....well, the "floaty" feeling that I was complaining about and the vertigo do seem to be a little bit better. Maybe the highter pred dosage is helping. But my brain fog was really bad during the appt, I wasn't coherent and I didn't ask him all the questions that I wanted to.

He made a strange comment when I asked about my lupus flare, he said that I seemed to him like it was my fibro flaring now, not the lupus. He pinched a couple of my tender points on my arms and of course it hurt like heck, so he seemed to feel that validated his assessment.

So now the vertigo and double vision and blurry vision etc are due to the fibro and NOT lupus?? Now he's increased my Lyrica from 150 mg to 450 mg per day!

I'm confused. Does this scenario sound familiar to anyone else?
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


MJLD
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Date Joined Jul 2007
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   Posted 1/1/2010 4:38 PM (GMT -7)   
Uggghh! I hate when I leave an appointment feeling more confused than when I got there! I do not have fibro, just Lupus. I'm so sorry you are feeling bad! I hope you feel better soon! Judy

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/1/2010 7:05 PM (GMT -7)   
Thanks Judy....it's always kind of confusing having multiple disorders. You're never sure which illness is causing which set of symptoms.

I guess I just wanted to vent a little, 'cause there's really no way to resolve my confusion. I'm just a bit frustrated! :)
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Lynnwood
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Date Joined May 2005
Total Posts : 7020
   Posted 1/1/2010 7:53 PM (GMT -7)   
I hate it when the drs do that!! I went from a dr that was 100% lupus, to one who is 1% lupus/99% fibro. Fortunately the treatment from the first dr is pretty much controlling things, so #2 isn't giving me much trouble.

The rule of thumb for most "double winners" here is that it's a lupus flare if prednisone helps it, a fibro flare if prednisone has no effect.....

So much of treatment for both illnesses is by trial and error that I often wonder if the drs are useful bits of the process or not - I know how to do trial/error on myself, and the feedback and adjustment'd be a lot quicker without having to go report to them....although I guess have the periodic blood tests is useful....

It's all craziness!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/2/2010 3:48 PM (GMT -7)   
Thanks for your perspective, Lynwood.....I do know what you mean about doctors and their biases! :)

I've had 3 different rheumys in the past 2 years; my current one is a fibro specialist, although he's the one who dx my lupus. He runs a research clinic at UCLA for fibro. He prescribes meds for me for both fibro and lupus, so I guess I'm covered. He did increase my pred dosage when I had the lupus flare, and it seemed to help a little (not enough). Now I'm back to the vertigo and brain fog big time, but since I'm not showing the malar rash he says it's the fibro....I just don't know.

I agree too that drs may not always be useful, except to order tests when you need them, LOL! I know that [iI'm the one who perseveres to figure out what's going on....I'm usually the one who suggests that I be tested for this, that or the other because it matters to me! The key, I guess, is to find a doctor who's willing to listen and go along with your investigations and order tests for you.

And now I've found out that I may have Lyme Disease, and my rheumy says he doesn't believe in chronic Lyme! Well, I anticipated that reaction from him and made an appt with a Lyme-Literate MD this month already.....we'll see what happens next!

My medical issues are always an adventure! :)
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 1/2/2010 3:54 PM (GMT -7)   
Wait a minute. He ups your prednisone and tells you he thinks it's a fibro flare and not a lupus flare? It sounds like he's the one with the brain fog.

Speaking of brain fog, I wrote a check for $200 this morning and the person I paid turned around, handed it back to me, and said, "you wrote this for $2,000."
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/2/2010 4:19 PM (GMT -7)   
No it's my fault, my post wasn't very coherent! :)

He told me in October that I was having a lupus flare, and upped my pred at that time. Now, when my symptoms got bad again he decided it was not lupus but fibro this time. This time he increased my Lyrica from 150 mg per day to 450 mg per day!

I guess I didn't look "lupie" enough, so it's fibro....? It's just so confusing to me. :)

Patty, I totally relate to the check writing thing....I really have to watch myself when writing or typing. It takes me 5 times as long as usual because I reverse letters and numbers and do the craziest things and I have to double and triple check myself.

Good thing that person you paid was honest!! :)
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/2/2010 5:40 PM (GMT -7)   
(((( JoAnn ))))) so sorry you are dealing with this. I don't have fibro, just lupus to deal with and that's enough for me. BUT I do hope the increase in fibro meds helps this one, if it doesn't call the doctor and maybe he can increase the pred again.... especially since the vertigo is coming back. I pray you feel better soon.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/2/2010 9:02 PM (GMT -7)   
Thanks Stacie! Today I felt like I had a little more energy and I didn't "crash" in the afternoon like I usually do, so maybe the Lyrica is making a difference there. But the vertigo was no better....so maybe that's not a fibro thing?

Your prayers are very much appreciated!
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/3/2010 1:20 PM (GMT -7)   
My last visit to my rheumy was so frustrating because of this whole fibro vs. lupus (UCTD) thing.  I actually even just stopped checking in here at HW because I just couldn't stand thinking about it any longer.   I was initially told (2nd rheumy) that my high positive ANA was an indicator of connective tissue disease, NOT fibro, which had already been diagnosed by the 1st rheumy.   I was sent  to the 2nd  rheumatologist by a new PC because of increased fatigue, and mouth sores and infections in my fingernail beds.  3 yrs later this same rheumy reversed her original position and stated a positive ANA could be a product of fibromyalgia alone.   It doesn't feel like just fibro - but other than + ANA and high CRP my bloodwork supplies no other markers.  Just lots of symptoms.
 
I don't care what it is - I just want to feel better.  Joann - my mother saw 2 ENT's because of vertigo that would come and go and last for weeks sometimes.  Finally the 3rd one dx'd meniere's disease, which is, I believe, another autoimmune disorder.   Round and round.....
hope you get some answers and/or relief!
 
 
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/3/2010 1:32 PM (GMT -7)   
Oh wow. I am sorry bout the confusion. Jeepers, I have a hard enough time at the Rhuemy dealing with just lupus, I can't imagine having to add other issues to talk with my rhuemy about.

How are you feeling today with the pred increase?

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/3/2010 1:53 PM (GMT -7)   
Thanks lucysgd and Amy....lucy, sorry to hear you're confused too! I do know what you mean when you say you just didn't want to think about this stuff anymore....I feel like that all the time too! :)

Amy, today my vertigo is better than it has been in weeks! If the prednisone is responsible for the improvement, then the vertigo must be due to an autoimmune condition....? Either lupus or ?? Who knows! I'm just glad to be feeling better!

My fibro pain is less too, so the increase in Lyrica must be helping. Still have the blurry vision and double vision....oh well; at least I may be able to go back to work tomorrow! Tomorrow will be a long day, then on Tuesday I have a spinal MRI plus a spinal tap.....ouch.

Can anyone tell me what to expect from the spinal tap? I've heard about spinal headaches.....will I be able to go back to work on Wednesday?
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/3/2010 4:28 PM (GMT -7)   
(((( JoAnn )))) praying for your doctor's appt on tuesday, please let us know how is goes. Take care my friend
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/4/2010 11:57 AM (GMT -7)   
Thanks again Stacie....I will definitely keep you posted!

(((hugs)))
JoAnn

P.S. I should get the results of my Lyme test (Western Blot) sometime this week too!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/5/2010 5:21 PM (GMT -7)   
Just a couple of suggestions and an obervation.
 
I've found it helps to make up an outline before I go to a Dr visit.  That way I know nothing will be overlooked or we won't get sidetracked on something that's not that important.  I've also found it helpful to take my wife with me to most of my Dr visits.  It helps to have someone else there and then you don't have to try and tell them what was covered in the visit - cause they heard it first hand.  Can someone go with you to your appts?
 
Sorry you're having to deal with the chronic lyme thing.  It's an ongoing struggle.  Don't let them wear you down tho - it's important to get it treated.  Also - hate to be the bearer of bad news - but you may have a "triple witching" thing going on - and your treatment is more complicated if you have lyme.  Steroids - like prednisone - reduce inflamation - by suppressing the immune system.  So ... if you have an infection and are taking it - you could be turning the infection loose because you've further suppressed your immune system.
 
So ... there is the possiblity that while you're improving one thing with the pred, it's also making something else worse.  Maybe that's why it's been so difficult to get overall improvement?
 
Oh well .... I hope for all of us that 2010 is better than 2009.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/6/2010 12:13 PM (GMT -7)   
Thanks Rich.....those are great points.

I've made lists of questions to take to appts before. Sometimes it helps but if I'm really foggy I have actually sat there with the list in my hand and forgotten to look at it! LOL!

I've also taken my husband with me before but unfortunately he doesn't like to discuss my medical issues and prefers to sit in the waiting room reading a magazine... :)

My second daughter would be the one to take with me (type A personality like me) but she lives in another state. :(

It's true that my immune system is suppressed by the pred and the Imuran.....necessary because of the autoimmune hepatitis and other AI diseases. My rheumy told me he doesn't believe in chronic Lyme; its OK because I've got an appt with a LLMD on 1/16.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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