lupus & possible sjorgens questions?

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New Member

Date Joined Feb 2014
Total Posts : 3
   Posted 2/12/2014 9:32 AM (GMT -6)   
hello, I've been increasingly I'll for about the last six years and I have finally begun to get answers and treatment just waiting on the official sit down with my rheumatologist. my GP informed me that the rheumatologist is treating me for lupus and that I may have sjorgens as well. The rheumatologist has started me on planquenil and I am on my 2nd 9 day tapering dose of prednisone but I only have two days left on the prednisone. Now that the dose has been reduced my fevers are coming back and I am up all night pouring sweat and freezing. I wake up feeling sick again and ha e already been having horrible fatigue even with restful sleep for the last 4 years. prednisone has helped the fatigue a lot but I worry about calling her again to request another tapering dose. Is it normal for symptoms to keep coming back as soon as the prednisone is tappered down or removed? I am aware that planquenil can take months to begin having noticeable effects but I have an infant and an 11 year old to take care of and can't do it when I'm stuck in bed feeling like every part of my body is quiting on me. I am nervous to call again and bother her if last time she only called in another 9 days. Has anyone been put on prednisone for longer while waiting for planquenil to work? PS I've only been on the planquenil for about 8 days. thank you in advance. I'm so happy to know I'm not alone in this anymore and there really ARE people with what was just recently my mystery illness ;) <3

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 2/12/2014 1:49 PM (GMT -6)   
Glad you found us mia0101 and welcome to our forum. I'm sorry you're so sick and have a baby and child to care for also. Yep, plaquenil can take months to take effect, but it should make you feel better for quite a while. You may or may not, later need to be placed on additional meds.

To me, the worst thing about prednisone is the moon face, buffalo hump, bruising, and paper thin skin. To the docs it's all the unseen side effects like high blood pressure and adrenal gland shutdown. The worst part about being on prednisone long term is that if you have organ involvement from lupus prednisone must work. If you take it continuously in high doses it may not work when you need it. I was diagnosed with lupus in 2005, have been on prednisone off and on for years, and have currently been taking 10-15mg prednisone daily for a couple of years. So I personally don't see any harm in taking tapers (you must always taper), but you also need to find other things that can help. Read our lupus tips at the top of the forum. One of my favorites is a warm bath with Epsom salts.

I also have Sjogren's and fibromyalgia. I'm the Sjogren's moderator and just from what you're telling me, I don't think you have Sjogren's symptoms. If you start having the dryness or have the Sjogren's antibodies please stop by! We don't get much traffic :-)

I hope your official rheumy visit goes well. Take a laundry list of all the problems you can think of and all the questions you have. Please let us know how you're doing, okay? Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Sjogren's Moderator

New Member

Date Joined Feb 2014
Total Posts : 3
   Posted 2/12/2014 2:20 PM (GMT -6)   
thank you so much! I do have many other symptoms going on hat keep me down, and my eyes have been swollen and dry for months now along with my mouth and toungue. It was actually just yesterday that I even learned that they suspected the sjorgenes as I had no idea what it was....still don't know much. I was lucky to get a call from my rheumatologist right after I posted this requesting me to come in first thing tomorrow morning. I'm really hoping the appt goes well because it feels like every part and system of my body is broken and insists on getting worse. that being said I am happy and feel lucky to finally get help. I only wish I had done more about it years ago so maybe I wouldn't have to look back and feel like I've lost all these years. thank you again I will be trying the warm bath with Epsom salt tonight ;)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 2/12/2014 3:43 PM (GMT -6)   
Are you using anything for the dry eyes and mouth?
I did the plaquenil without predisone at the beginning of my treatment. It's rough until it kicks in fully. I always feel rough during tapers but I don't want to be on predisone longer than ten days at a time. I "crash" at the last of a round.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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