Symptoms came back this Quick...Really???

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Regular Member

Date Joined Sep 2011
Total Posts : 79
   Posted 11/28/2011 5:43 AM (GMT -6)   
I just recently got diagnosed with Lupus and it was put on Plaquenil and a round of Prednisone for three weeks.  I did the Prednisone that was in a taper down dose and now I have been off of it for a week.  I noticed that my symptoms were getting just a little bit better, especially in my right hand and I have this bizarre mouth and eye dryness that I just can't explain and it is all coming back.  This weekend I felt it all creeping back in like a fog.  Speaking of fog, it is so bad my eyes should be fog lights. I was by no means all better but I was feeling so much better and just one week off the prednisone and BAM I am a stiff foggy sleepy lump!  Really?????  Is this the drill you Lupus veterans?  I have this new Dr one who cares and is really good and when I told him that I had "mild Lupus" he said honey Lupus is Lupus there is no mild!  When I said I didn't have auto immune hepatitis he said "how do you know did they do a liver biopsy?"  I said no they didn't because my vit D and calcium are low and my liver enzymes are high.  I work for my Dr and I passed his nurse in the hallway and she grabbed my arm and she said "why are you yellow?"  She said you just bought yourself some fasting bloodwork.  I don't have the results yet I should get them today but I know I don't feel right and I have stiffened up like the tinman this weekend?  What cha y'all think.....Flare?
Synthroid 250mcg Topomax 100mg Lamictal 300mg Vit D 50,000 Mon & Thurs B12 1ml inj weekly  Plaquenil 200mg 1x then 2x alternating Percocet 100/325 PRN Imitrex inj/nasal PRN

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 11/28/2011 8:42 AM (GMT -6)   
I'm learning too, but I'm pretty sure that prednisone is prescribed long term for a year or so when u are first diagnosed...I'm sure someone else who knows more will reply. I'm taking 10 mg daily for now, but not so sure this will be enough.
Jessica, diagnosis: Celiac Disease, Systemic Lupus Erythematosis
MVP, Clinical Depression, Anxiety
Celexa, Atenolol, Prilosec, Prednisone, Meloxicam

New Member

Date Joined Nov 2011
Total Posts : 13
   Posted 11/28/2011 9:32 AM (GMT -6)   
I just just diagnosed as well. But I think I know what the dry eyes and mouth is. It is a secondary disease to the Lupus it is call sjogrens disease. Pretty sure I spelt it right. Need to let your doctor know. sour candy really helps with the dryness with the mouth. And so does water and lemon they have mouth washes and eye drops. Hope this helped you a little.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 11/28/2011 11:51 AM (GMT -6)   
If your symptoms are not being controlled, you will probably be placed on a longer-term regime of prednisone. And if that doesn't help there are other medications that can be added, such as Imuran, Cellcept, and Mythltrexate (MTX).

Yes, Sjogren's Syndrome is often a secondary disease with Lupus. However, you don't want candy in your mouth all the time, save your teeth! Try Biotene mouthwash, toothpaste, and gum. For eye drops, use an Eye Lubricant *without* any medication or "remove the red eye" stuff - lubricant only. Tell your Dr your symptoms!

Feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jul 2010
Total Posts : 468
   Posted 11/28/2011 3:35 PM (GMT -6)   
Hi PJ555,

I recently got put on Plaquinel have been on it going on three months now. I was feeling better if fatigue a few weeks after starting it but I think I am having a flare or maybe its just a virus not sure. I have been very tired lately, both my lymph nodes under my arms are very swollen and painful plus I have been having joint pain in my knee, shoulder and foot pain. Seems like a flare to me but it could just be a virus. I plan on making a doc appt with my PC if its not better by end of week.I really hope its just a vrius I wanted this medication to work.
It sounds like you were not on the medication long enough and now you are flaring but Im not a DR clearly so I cant say for sure. Hope you feel better.

Post Edited (LAWCHICK) : 11/28/2011 1:39:09 PM (GMT-7)

Regular Member

Date Joined Sep 2011
Total Posts : 79
   Posted 11/28/2011 4:14 PM (GMT -6)   
Thanks you all! I did go see my Internist today and he said that I was NOT on the Prednisone long enough. He said I should actually be on it probably for about a year low dose all the time. He looked in my mouth and said that I have sores all over and a BIG one on some lymph node or something on the inside of my cheek. It has been so bad I can barely swallow or chew. He said it is going down my throat. He gave me a rx for a mouth wash that I rinse with and swallow. He said to use eye drops hourly because I wear contacts too and they have been so dry that one actually ripped while in my eye on Saturday even my nose has sores in it. My ANA is down from 1:320 to 1:150 but he said that is probably due to the steroids. My liver enzymes are better now but he is skeptical still and says that I have Lupus and Autoimmune Hepa***. My ferratin level is on the floor again so I have to take Iron again it has been a 4 before I had to have 12 bags of Iron in February when I was in the hospital. He gave me a huge shot of steroids and said I should stop feeling like the tinman soon LOL
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 11/28/2011 6:19 PM (GMT -6)   
Hope things settle back down for you. My GP gave me my blood test results showing I was positive for Lupus but don't see the rheumy guy until Jan so am just on the gabapentin, oxycodone and amitriptyline for the joint area pain and already take azathioprine for my Crohn's disease anyway. Odd thing is when I saw the rheumy he did test for sjogrens as eyes are really dry but said that was negative. Eyes are so dry they feel gritty all the time and had to stop wearing contact lenses as they stuck to my eyeball where it was so dry and had to peel them off and boy did that sting!

So no idea what it is with the eye thing as optician and rheumy both said eyes not dry but can feel my eyelids sticking to eye sometimes, weird!
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/28/2011 8:20 PM (GMT -6)   
Get you some Soothe drops. They help my eyes.
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