diagnosis via treatment

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alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/29/2009 9:45 AM (GMT -7)   
So . . . I saw the rheumatologist yesterday and he said he is confused . . . basically my blood work indicates SLE, Sjogrens and other connective tissue disorders, but no positive ANA (have never had a positive ANA) . . . he said that he has never really seen my combination of blood work results, has never seen positive cytoplasmic staining without a positive ANA . . . good news is, its not fibro or CFS . . . bad news is he can't nail down anything definitive right now . . . He ordered all new bloodwork again . . . just had that done 2 months ago!
 
He started me on plaquenil - i have always been pretty resistant to start on meds as long as i could cope, but its been really hard lately . . . so achey, so tired - bone crushing fatigue, nausea every single stinking morning . . . i decided i had to do something . . . sick & tired of being sick & tired.
 
He said that if my latest issues are lupus related, the plaquenil will help. If it isn't, the plaquenil won't help and we are back to square one. He said all we can do at this point is approach it through a "diagnosis via treatment" method . . . I feel like i'm on "House"!!
 
Anyway . . . hoping the plaquenil helps . . . hoping something helps. eyes
 
Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 4/29/2009 10:50 AM (GMT -7)   

I have the opposite problem....no indicators in the bloodwork other than a high positive ANA, but all the symptoms of a variety of AI problems.  Lupus seems the most likely.  Liver enzymes are occasionally high - and CRP, and white count is occasionally low - usually during a flare.  Never had the AI markers run while in an acute flare - always wonder if something would show then.   Anyway - have been on Plaquenil 6 mos. - treatment witnout firm diagnosis.  I feel it has helped somewhat.  Having fibro complicates the results.  Will see what rheumie says next week at my 6 mos. visit. 

Am curious how your rheumie excluded chronic fatigue as a diagnosis?  With lab work?

I really feel ya on the "sick and tired of being sick and tired feeling"!  I waited too long to try medication.  Even if it doesn't help you siginificantly - you have another answer of sorts and you're one step further along in the process.   I hope the Plaquenil provides you with relief though, and you start feeling better soon! 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/29/2009 11:18 AM (GMT -7)   
Hi Lucy,

The rheumy said that if it were Fibro or CFS, I would have predictable pain trigger points at certain locations . . . when he was "testing" the pain trigger points, it actually felt good (he could have kept at it for a while and saved me the money of going to see my massage therapist)! Also, CFS and Fibro are not considered autoimmune disorders and I have ai markers in my bloodwork along with chronically elevated liver enzymes, low potassium levels, low rdw levels . . .

I suppose that it really doesn't mean that I couldn't have CFS, but he doesn't seem to think that CFS is my issue . . . really got no answers yet as to what really IS my problem, but at this point I really don't have much of a choice but to do the plaquenil thing and see if it works . . . I should have bloodwork results back next week and a follow up with the rheumy in July . . . hopefully by then the plaquenil will have had some results!

Good luck with your rheumy visit next week! let us know how it goes?

Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/29/2009 3:08 PM (GMT -7)   
Anne
It's good he put you on plaquenil you might start feeling better, it takes about 6 months to start kicking in, hope you can get your answers soon. Take Care. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/29/2009 3:54 PM (GMT -7)   
Hi Anne,

I hope the plaquenil helps . . . but it does take months to fully build in the system. Some patients feel relief quickly and others don't. It often takes a combination of meds to quiet things down if you are in a flare. Most of us aren't aware that it is working until we go off of it (because we think it isn't working) and then find out that it was actually doing a lot.

Have you gone for your baseline eye exam??? I hope the plaquenil helps you LOTS.

Keep us posted.

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/29/2009 4:12 PM (GMT -7)   
I have the baseline eye exam scheduled, although not until the end of june - the opthalmologist was booked until then. The nurse seemed to think that it would be ok to wait that long.

I am hoping the plaquenil works . . . i was on fairly high doses of chloraquine (same family as plaquenil) last year when i went to china (prophylactic for malaria since we were going to some pretty remote areas with less than desireable sanitation in the factories) . . . and, while it gave me the most bizarre dreams, i remember that my skin issues were practically cleared up by the time i got back after 3 1/2 weeks - i contributed it to the fact that it rained the entire time i was there and that the humidity was good for my skin . . . i dunno . . . maybe it wasnt the humidity? we will see . . .

Thanks for the replies :)

Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/29/2009 6:43 PM (GMT -7)   
LOL. The humidity wasn't what did it, I live in very high humidity and that doesn't help my skin in the slightest! It was the malaria treatment that helped you out -- chloroquine is often used if/when plaquenil is not tolerated.

I found the dreams went away after a few weeks, so I hope you feel better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

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