New here....feeling terrible, have questions

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 9/22/2009 3:05 PM (GMT -7)   
By way of introduction:

I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia. Also possibly Sjogren's Syndrome.

I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job.

Lupus runs in my family, along with dozens of other autoimmune diseases. Two of my aunts died from complications of lupus. One of my adult daughters has lupus too, so I'm very familiar with the symptoms. But I've never had them until now.

I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

Yesterday I deliberately spent 20 minutes out in the sun (as a test) and started to feel really bad. I had a headache and felt tired and weak. Today I feel like I was run over by a truck....my daughter says that's the same reaction she has to sun exposure.

I just emailed my rheumy a picture of my face when I had the "butterfly" rash and he told me to come in and see him as soon as possible. I've got an appt for tomorrow morning.

I'm scared that I have lupus now, on top of everything else! I'm on Imuran and prednisone though, and have been for over a year! How could I possibly develop a new autoimmune disease while taking those meds?? Of course, I was at 40 mg of prednisone in June '08, and have been tapering down ever since. I'm now at 7 mg.

Anybody here have any thoughts about this??

Thanks for your help...

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 9/22/2009 3:43 PM (GMT -7)   
JoAnn,
 
You might have a developing overlapping connective tissue disease.  Many with AI disease struggle to get a diagnosis but have lots of symptoms.  As for your meds....some cases are resistant to treatment and symptoms persist.  Most cases respond to prednisone but mine did not and I almost died.  It took IVIG to turn things around.
 
Treatment of any AI disease is more art than science and each case is different.  I have mixed connective tissue disease which is lupus, scleroderma and polymyositis.  It took about 13 months to get a firm diagnosis and even though I was being aggressively treated polymyositis was resistant to treatment. 
 
Have you been tested for a myositis disease?  Do you have significant muscle weakness?  Which muscles?
 
Bill 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 9/22/2009 4:02 PM (GMT -7)   
Hi Bill,

Thanks for your reply....I have wondered about MCTD before, but I didn't think I met the criteria. I do have weak muscles, pretty much all over. Legs, arms and trunk muscles are all weaker. I just blamed it on fibromyalgia though.

That's the problem with having too many diagnoses....you don't know which illness is responsible for which symptom!

I will ask my doctor about MCTD and see what he thinks.

Thanks again!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/22/2009 5:27 PM (GMT -7)   
JoAnn,
 
There is something called UCTD (undifferentiated connective tissue disease) and it is usually a transitional diagnosis when symptoms do not confirm a diagnosis of mctd or something else.  It often morphs into something more concrete but not always from what I hear.
 
 
 
It pays to get a second opinion in complicated diagnoses.  Just make sure the rheumy is experienced in AI diseases otherwise it is a waste of time.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/22/2009 8:40 PM (GMT -7)   
That's a very helpful link! Thanks Bill!

My current rheumatologist is a leading expert on fibromyalgia, which is the main reason I chose him. He founded a center for fibro research and is a professor at UCLA. I assume he knows quite a bit about AI diseases, particularly lupus, RA, and similar illnesses.....at least, I hope so!

I suppose I'll find out soon enough.

He's my 3rd rheumy in a year.....I have no problem firing doctors that don't listen to me. :)
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/22/2009 10:21 PM (GMT -7)   
I seem to always flare up when I'm tapering down on meds. There seems to be a threshhold as I taper down and when I hit it, my body flares up sometimes worse than before, and sometimes with new ailments, which is always a not so nice surprise. If you are really sick, you might talk to the doc about going back up a little and see if it gets better and then try to taper down again later, when you feel better. ITs funny, once I'm all the way off, I can feel fine, no flare (after I suffer through the taper one and get my taper drawn out). Sometimes I think its hard to taper down all the way in one attempt, no matter how slow you go. I usally go back up but not as high as I was in the beginning, then back down again.

There's some good info on trigger foods and other kinds of triggers through the forum here.

My mom is going through the same thing geting off entocort. She was on Imuran too but couldn't tolerate it. She has been trying to get off the entocort for months now.

It sounds like you have a whole lot of illnesses to deal with and I'm glad youhave the markers so they can properly diagose and treat you at least. I hope you feel better soon.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/23/2009 6:59 AM (GMT -7)   
Thanks Marji....perhaps I do need to go back up on the prednisone again. But I really hate prednisone! :(

I'll add this to my list of things to ask my doctor...otherwise I'll definitely forget! Brain fog is bad today.

((hugs))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.

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