Should I listen to this rheumy? I feel so discouraged and hopeless.

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New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/10/2010 8:34 PM (GMT -6)   
Help!  I have been so ill for the past 10 years since I had my daughter and after many years of seeing specialists and misdiagnoses, I finally said to heck with the public system (I am in Canada) and paid for a high-end private clinic my company uses.  I found an amazing doctor who 1) believed me and 2) worked with me to come up with a plan of action.  I had extrem fatigue (falling asleep in the car when I was in traffic--and the driver!) , flu-like episodic symptoms, night sweats/chills so bad am soaking wet and not able to sleep, brain fuzz, etc. that I was at a point that I was worried I was going to lose my job if I did not find a solution.  I have ANA antibodies and with the presenting symptoms, he immediately felt Lupus was very likely and we made an appointment for a rheumy.  Of course, the appointment was for 5 months away (welcome to the public system) and I knew that if something didn't happen before then, my job would have been history.  We started treating it bcause if it wasn't I wouldn't respond.  He started me on 50 mg of predinose to taper down each week by 5mg as low as I could go.  After two days -- it was a MIRACLE!!!  I was me again! The bad news is that I am on 45 mg. and felt terrible again at 40 mg.  I know this is a high dose but was intended only as a stop gap.
So, I saw the rheumy today and he was ANGRY at ME for being on predisone.  He basically said I could have lupus but he has not seen my presentation before, fatigue isn't one of the symptoms that diagnose lupus, ana antibodies also doesn't really mean anything and my exercise intolerance is a mystery.  He doesn't understand why the predisone is working and I got the feeling that he neither believed me nor really gave a darn.nono
The only good thing that came from it is that he is sending me to the Lupus clinic who as he said deals with  atypical lupus.   I am trying to guard my optimism about finding a solution but feel like I have been kicked in the teeth...any advice would be helpful. thx.

Forum Moderator

Date Joined May 2005
Total Posts : 6923
   Posted 2/10/2010 9:12 PM (GMT -6)   
Oy! Doctors hate it when they think they've been insulted somehow. They are crazy. I wonder is the rheumy public and the other dr private? Maybe there is tension between the two ways of working that would make the rheumy mad?

My lupus first presented as very extreme fatigue...I didn't fall asleep while driving but only because I knew I was too tired to drive! So I don't really know what planet that dr is from.

That said, it is VERY UNUSUAL to start lupus treatment with that much prednisone, unless you are having major organ failure that really is a high dosage.

The lupus clinic may want you off the prednisone before they try to diagnose you - many symptoms can easily be hidden behind the amazing energy boost from prednisone.

Hopefully you can visit the lupus clinic and say that the diagnosis is still unclear -- that way they can use all their expertise in narrowing down what kind of autoimmune disease the +ANA may be indicating. (Positive ANA is not unique to lupus.) I've found over the years that I get better results if I present a question rather than a conclusion to a dr!

Like dealing with porcupines, isn't it? Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/10/2010 10:00 PM (GMT -6)   
Thanks for the support.  I guess I was just so taken aback by his anger that I just wasn't thinking clearly.  I have a sneaky suspicion you are right about the private/public thing.  These forums are a life saver and I am feeling more positive again and ready to go back into battle.  Sigh.  Glad to hear about the fatigue as that really threw me.  In all of my research I had never seen that fatigue WASN't a part of lupus.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/11/2010 4:14 PM (GMT -6)   
Think of it this way, you are being sent somewhere where they deal with lupus and atypical lupus at that. It is a really good thing. The doctor may be concerned about what all that prednisone is doing to your bones because Lynnwood is right that kind of dose is usually reserved for serious organ involvement. I have CNS involvement and I was only moved to 40mg yesterday because my symptoms have increased and CNS lupus is very dangerous. Fatigue is always part of lupus as far as I know. I have a negative ANA so your ANA may mean something or it may not, with your other symptoms though I think it likely means something is going on. I think the doctor felt his professional toes had been stomped on really hard plus there may be a thing with private versus public like Lynnwood said. Just be glad he didn't write you off completely and instead is sending you somewhere they can help you better than he can.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/11/2010 10:55 PM (GMT -6)   
thanks for the help and great advice.  I am starting to taper down again but this time it is going already much better. I am at 40 mg and feel fine.  I will continue to taper as my original doc suggested 5 mg per week.  Now, I think that I am in a much better place after all that prednisone.  Also, I have completely changed my lifestyle with no heavy exercise and yoga as my main thing.  
I am looking forward to the clinic but as I am learning from these forums, I am not waiting until then to heal and have a quality of life--i will keep going and finding solutions that work!
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