Holding my breath

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Regular Member

Date Joined Jan 2007
Total Posts : 135
   Posted 4/19/2007 7:54 PM (GMT -6)   
I am on month  4 of my plaquenil and my fatigue and achy feeling is almost gone. yeah yeah I dare to say, that for the last 2 weeks I feel just about normal again. I am walking on eggshells though. It's a great feeling. I pray it lasts forever. I am still resting daily and trying to keep my stress down. Stress + Lupus= flare nono
Plaquenil seems to be working. It's so strange. I keep having doubtful thoughts of "maybe I am fine and don't have Lupus anymore." This is my first phase of feeling better. I would love to go to the Rheumy and say ok test me again. See if the Lupus is gone. But I know deep down that it's not gone. But I will enjoy the fantasy for as long as it lasts. And quietly CELEBRATE feeling good. cool
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen.

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 4/19/2007 8:40 PM (GMT -6)   
Good to hear that your lupus is under control. Yes, Stress + Lupus = Flare, and this is also the reason for my current flaring. Well! When we are in good shape, we ought to enjoy and celebrate, but don't overdo/work yrself. I sometimes wish the lupus would go away, but I knew it would not and never would.

Regular Member

Date Joined Jul 2006
Total Posts : 245
   Posted 4/19/2007 11:07 PM (GMT -6)   
Kitty how many mgs do you take? I have been on 200mgs for mo &half & they upped me to 400 mgs the other day. I have noticed a big difference. I was sick for a yr solid until I started the plaq. It then let up the first mo only to come back. I'm praying the dosage just needed upped.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/20/2007 4:12 AM (GMT -6)   
(((((((kitty)))))), I think it's wonderful. I hope you have many many good days as well. I think we all question if we are really sick when we have so many good days in a row. I also have heard of people going into remission. Wouldn't that be wonderful. Whatever happens continue to enjoy every painfree moment!
praying the continue
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/20/2007 8:41 AM (GMT -6)   
Kitty, that is such great news - I'm so happy for you. Like the others said, just enjoy these good days. Maybe your lupus was caught early enough that the plaquenil can really get things under control for you and keep it under control. Just remember that just because you are feeling better that it doesn't mean you don't need your meds - you are feeling better because the meds are doing their job. I have read some heartbreaking stories here of people who thought they could quit their plaquenil and then ended up very sick and flaring and had a hard time getting things back under control. Your doctor can work with you and help you know if you are going into remission and what to do regarding your meds.

I know what you mean about the fantasy about not really having lupus. I've thought that myself on some of my really good days - it's a nice fantasy to have sometimes. I like how you said you will quietly celebrate. It sounds like you are doing everything you need to in order to avoid a flare. I am praying that your good days continue and that you are headed for remission.

Take care and keep us updated on how you are doing.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Jan 2007
Total Posts : 135
   Posted 4/21/2007 2:44 PM (GMT -6)   
Thankyou everybody.

bhkhh, I am taking 400mg a day. I take 200 in the AM and 200 in the PM.

I haven't stopped my plaquenil. No way. I'm not that much in fantasyland lol. I did make one small mistake though. I cut my Naproxen in half. A couple of days ago I started taking it only in the morning. I did fine for a few days then BAM the achy feeling was back. So, I started taking it twice a day again. I am feeling a little better. Oh well. BUT, no flare. Yea! I am taking it easy still. I want to go work out in the yard but I am scared too. Maybe tomorrow for just a little while. We'll see. I hope everyone else feels better too very soon.

Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2007 4:00 PM (GMT -6)   
Hi Kitty,
  I'm so glad to hear you are feeling alot better. I hope this continues to improve with each passing day.... yeah . It's good to hear you are still resting and trying to limit stress. Just take it slow and easy. Please keep us updated and take care. You are in my thoughts and prayers.
                                                        ((Hugs)) Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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