Avatar universal

Can DILE cause this?

I may have DILE.  on meds - zoloft diltiazem altace Crestor lantus humalog

Positive ANA test  Dec 2008 - negative Ds-Dna but low C4/ or 5.  I started Crestor 20mg  3 weeks before and then I suddenlly lost  following  bilaterally entire body:

seconday pain sensations symmetrical entire body
unable to feel muscle aches
ability to sweat
itch sensation
anxiety fight flight resp
full bladder sensation

Still had:
all motor responses
felt sharp pain

other new symptoms

decreased sensations and emotions like on pain killers
trouble concentrating forgetful;
Unable to tolerate background noises.

All above not present 100% of time.  Initially came and went often and then was gone for majority of next year.

Initially all ct scans - MRi's - carotid doplar - normal  WBC count was bit low .  

2010 onset bilateral knee pain.  Started Naproxen Sensations came back a bit.  Stopped all meds  Within 36 hours I was anxious, itchy  like crazy, starting to sweat, feeling hunger and bladder, had neck pain and achy back.  I had to take benadryl for itch

Took all meds and stopped Naproxen.  all symptoms back within 12 hrs Had SPECT scan done  Results: very subtle decrease in bilateral oerfusion in both frontal lobes and in both anterior temporal lobes -found not to be typical of cerebral vasculitis.

Stopped all reg med except insulin for four days with no results (not on Naproxen)

Started Naproxen 350 mg 4 times/ day.  Stopped all reg med except insulin.  Now have all normal sensations back and all symptoms gone

Can decreased perfusion cause above symptoms and can SPECt resullts be caused by DILE?

Could decreased blood flow to these regions in my brain as seen on the SPECT scan  be caused by swelling caused by DILE? trauma to the neck? both?

Could decreased perfusion cause the symptoms I experienced for over a year?

I don't even know if I should stay on the Naproxen?  
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Avatar universal
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

It sounds like you have many symptoms that would be difficult to tie into one diagnosis; there is a word limit for posts on the physician's forum so that a summary can be provided so that answers can be more focused to a specific question.  That would optimize our ability to answer your questions.

The findings of mildly decreased metabolism on SPECT are of unclear significance, and would be unlikely to be related to drug-induced lupus. Some causes of decreased symmetric metabolism on SPECT in the distribution described include medication effects, early dementia, and just a product of the test and its interpretation.

Some of the symptoms you experienced when you stopped all your medications may have been withdrawal symptoms (stopping zoloft suddenly can lead to withdrawal) and this is recommended against.

Neuropathy can affect the peripheral nerves and lead to muscle aches, autonomic symptoms such as sweating abnormalities, and urinary symptoms. Neuropathy is evaluated for based on thorough examination and history, with ancillary testing as appropriate. Crestor can also lead to muscle aches, and this would be supported by an elevated creatine kinase on blood testing.

Drug-induced lupus is diagnosed based on specific laboratory critera; a positive ANA alone is not diagnostic of DILE. But if the diagnosis has been confirmed, DILE can lead to a variety of symptoms as you know, and many of your symptoms do not sound neurologic in origin. Discussion with your rheumatologist is recommended, with followup with a neurologist as indicated.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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Avatar universal

Thanks for the information.  I will try to get in to see a rheumatologist as soon as possibe.
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Avatar universal
Also - not sure if important - but initially in 2008 - extremely stiff and sore neck - so tipped head to left andchin up to right and pushed.  The neck popped like when you go to a chiro.  Next day is when I noticed symptoms.  

Two weeks ago - I stood up and stretched arms back - neck cracked and I had immediate intense pain on both sides of neck with limited ROM expecially to the left.  Unable to swallow without pain in vertbrae for approx 5 days.  On bed rest This is why I started Naproxen again and stopped all other meds (hurt too much to swallow them).

For further info - I have posted a complete history in the autoimmune community and the neurology community.  Sorry this is so long but I am not sure what is relevant and what is not.

Thanks so much.
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Avatar universal
Sorry - I had all above symptoms for over a year - above I indicated they were gone - I meant the sensations were gone.  I was unable to sweat, feel hunger, feel aches or muscles pains, numb etc.
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