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Regular Member

Date Joined Apr 2007
Total Posts : 28
   Posted 7/12/2007 6:48 AM (GMT -6)   
Hey all,
It's been awhile since I've last posted.  My bf and I are still in Asia having a wonderful time.  I have been feeling really, and I mean REALLY good (knock on wood).  It's hard to imagine that only two months ago I was in so much pain I could hardly get out of bed.  Now I'm working out everyday and have gone from 20mg of Pred down to 5mg!  My bloodwork is pretty much back to normal and I'm actually feeling healthy.
Everything seems just dandy, right?
Well, I've been doing a lot of thinking - and I always do this type of thinking when I'm feeling good: What if I don't have SLE anymore?  What if I never had Lupus at all?  What if the doctors made a mistake?  What if I have something else - something less serious - something I don't need to worry about?
I don't know why I play these mind games with myself.  It's just that I'm feeling SO GOOD right now that it's hard reading all the posts of you that are REALLY suffering.  I feel like I don't have Lupus because I'm not suffering like you guys.  I was in really bad shape back in May, but not to the extent of having heart problems and other severe medical condiions like some of you have. 
I'm not really sure what the point of this post is.....I guess I'm just frustrated with my diagnosis (even though it was 8 years ago!) because right now I don't FEEL like I have Lupus.  I don't even know if I've ever really accepted the diagnosis in the first place....
Everyone says I think too much.  I think I think too much. 
Does anyone have any input/wisdom to share?
Thanks for reading my rambly post.  
25, currently backpacking SE Asia
Diagnosed with Lupus: 1999
Daily meds: 400mg Plaquenil, 150mg Voltaren, down to 5mg Prednisone!!

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 7/12/2007 8:12 AM (GMT -6)   
Hi Jen,

I can totally understand where you are coming from. I have felt so good before that I felt almost normal again. When the Plaquenil kicked in, I was really doubting that I was sick too. Unfortunately I found out about a month later feeling good like this that I wasn't when I went into a small flare. Just make sure though that you don't overdo anything that might cause you to go into a flare. It sounds like you are in remission and the good news is that some people can go into remission for a very long time. I hope that is the case for you. If you are in serious doubt about your diagnosis, I would recommend discussing with your doctor and ask him/her what criteria did you meet for your diagnosis and if that criteria could be explained by other things.

Take Care
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/12/2007 9:11 AM (GMT -6)   
Jen, you don't know how much I relate to what you said about the mind games. Almost everytime I feel really good, those thoughts go through my head like, "maybe I never had lupus, so now maybe I'm better and won't feel sick ever again". When I think this way, I think I am probably playing out my fantasy that all the days of feeling sick are behind me and since I "never had lupus" I won't get sick again and I'll just go on and live my normal, healthy, happy life. RIght now I'm going through one of my feeling really good stages too - it's both wonderful and scary at the same time. I think it's scary because I'm not sure how long it will last.

I agree with Des about talking to your doc about all of this. It would be wonderful if you were in remission, and if you are, I hope it lasts a very very long time. I'd say that you should continue to really enjoy your life with the awareness that you still need to do what you need to do to stay healthy and to talk to your doc about any med changes that you might want to make. I've heard stories about people who have felt really good and then thought they didin't need their meds anymore and ended up flaring after they quit their meds.

I can't tell you how happy I am for you that you are feeling so good and that you are really enjoying your time in Asia. Don't ever be afraid to post good news here - we love to hear it and it gives us all hope for better days ahead. Keep taking good care of yourself and keep us posted 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 25mg; Neurontin 200mg; 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

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 7/12/2007 12:38 PM (GMT -6)   
I can definitely agree with everything you said. I was doing so good, I forgot I was sick for a while recently. Maybe this will continue for you and your lupus will be mild. Some people never get diagnosed and go through their whole lives and maybe it isn't so bad for them. The drugs are supposed to make you better... in my experience, doctors are more likely to misdiagnose by brushing you aside, labelling you as depressed, bipolar, cfids, fibro then by saying you have something like lupus, that puts responsibility on them. And most docs don't want it.
it cheers me up and makes me feel hopeful when things are going good for someone, especially me, LOL, and just enjoy. It's hard fought for by all of us, this good feeling, and don't feel bad about feeling good! Just be grateful for the meds that make you feel that way, like Des says, and take care.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 7/14/2007 6:15 PM (GMT -6)   
Hi Jen,
  I'm so glad to hear your doing so well..... yeah I hope you continue to get better with each passing day. Like the others said, don't feel bad for sharing your good news.... :-) . We love to hear good news!! Take care and enjoy feeling good for a change! You will be in my thoughts and prayers.
  I'm doing quite well myself lately.... :-) . I have been working more hours and sleeping better.
                                                     ((Hugs)) Babs
 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.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 7/14/2007 6:32 PM (GMT -6)   
Hi Jen,

It is wonderful and encouraging to hear that you are feeling normal again. A year or so again I had taken my dad to see his cardiologist, a longtime friend of mine. When he walked in the examining room he saw my prednisone face and asked me what was going on and I told him I had lupus. He then volunteered that the wife of one of his partners has lupus and went through a real rough time for about three years. Then she got better and has been fine ever since. I've always hung onto to the hope I felt when he told me about her. It's what we always dream of.

Not all of us lupies have internal organ involvement, and some are sicker than others. I'm more fortunate than many, and I too have been having more and more good days.

I agree with the others that it would be a good thing to discuss this with your rheumy when you return to the States, but other than that, I'd keep on doing whatever it is that you're doing. Doctors do make mistakes, but I agree that it's more likely for a doctor to fail to diagnose than to diagnose someone with lupus when they are in fact healthy. But I also know that it's possible to go into remission. I'm so happy for you. It sure sounds like backpacking through Asia suits you. I hope you're having the time of your life.

Thanks for staying in touch with us and for sharing your good news.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Apr 2007
Total Posts : 28
   Posted 7/14/2007 9:09 PM (GMT -6)   

Thank you so much for all the replies. :)  It makes me feel SO RELEIVED that others truly know what I am talking about.  It also makes me feel good that none of your replies were "Jen, you're thinking too much", like everyone else always tells me.

Thanks again for the encouragement. 

Take care.  You are all in my thoughts......

25, currently backpacking SE Asia
Diagnosed with Lupus: 1999
Daily meds: 400mg Plaquenil, 150mg Voltaren, down to 5mg Prednisone!!

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