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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/16/2011 9:11 PM (GMT -6)   
I can't believe I am typing this a second time! The thread walked off on me ugh
It has been a while since my last post and I am not sure if anyone remembers me. I wanted to share what's been taking place if it helps anyone else out. In 07 I was dx with Crohn's and Lupus after a horrible flare during the summer. ( Yes , I am sure of both dx's as they were positive by serology and biopsy ) Im a patient at John's Hopkin and their Lupus dept is second to none I discovered the hard way.
In 09 I had a severe flare of both disease after 2 years of treatment with the traditional meds like plaquinil and steriods alone with IBD medication for my colon. I ended up hospitilized as the inflammation was literally melting my gallbladder and needed to be removed ( surgical team was surprised by the finding ). The surgery threw my already compromised body into more complications and I ended up on TPN for 4 months unable to drink or eat, mass amounts of IV steriods, insulin to combat steriods sugars on and on and on the list goes. I had a nurse assigned to my home for 4 months and darn near didn't live to tell the story.The decision was made inpatient to start treatment with immunosuppressants.
I have to say that the joint pain is so much better!!! I used to cry when getting up at night to use the restroom ( roids make me pee all night ) , I would walk hunched over and it took effort to work into my limbs. One night I practically ran from the bathroom and jumped into my bed because I was cold and started crying when i realized how easily I had moved. How sad that when the  treasure of something as simple as a walk to the bathroom is taken away and then restored I didn't take more notice. ( shame on me ). I still struggle with the more minor joint pains such as rolling over every 30 mins at night because my hips hurt ect. I am pleased with where I am with pain
This being said. The fatigue!!!!!!! I tend to have pretty good times of feeling normal ( whatever that is ) but the fatigue hits every so often and slams me down from 3 days to so far the longest was recent at 3 weeks. I wish I wish I wish Immunosuppressants fixed that!. I lost 60 lbs from the drop in steriod use another plus. I take more medication than most elderly but what happens if I dont take them? Hell, I dont wanna know! I get sick easier now, I had pneumonia this winter after a flight to florida for vacation. The vacation kicked my tuches! Maybe Lupus patients shouldnt stray so far from home? hmmmmmmm I'm learning lol.
I'm trying to have a good attitude towards all of this. I bought myself a Kindle and it has saved my sanity! I read all the time and I can buy books online without having to go to stores. Good for shutins like us.
nice to "see" you all again turn

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 2/16/2011 10:11 PM (GMT -6)   
So sorry you had such a bad time of it, I am glad you are feeling better. I know reading really takes my mind off all my lupus troubles!

Do you take anything to help you sleep? I know it sounds weird to take sleep meds when we are fatigued and sleep all the time -- but my rhuemy suggested it a while back and good sleep at night really cut back my fatigue!!!

Good to hear from you,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 2/16/2011 10:19 PM (GMT -6)   
I sleep like the dead during fatigue storms. I think I'd be scared to make myself sleep harder? I do however take Ambian during times of pain and illness. Works like a charm!

Lyn ever want to borrow a Kindle book I will lend you some!

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 2/18/2011 7:19 PM (GMT -6)   
I started Ambien CR 2 years ago and the difference is amazing. Before the Ambien I was a very restless sleeper, often "waking up" more tired than I went to bed. Becuase of the pain I never fully relaxed (even in my sleep). My allergist prescibed the Ambien CR. Now when I sleep at night it is a "restorative" (is that actually a word?) sleep. I wake up refreshed and better able to cope with the pain. Hope you find some relief, soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.
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