[chal23]

Hi Friends!

Sorry to sound so morose, but I am really beginning to question remissions. I was on Imuran for a year, off for the last two months and have been incessantly sick, exhausted, achy, fever, etc., etc, flaring off and on ever since. My labs came back really good in March (i have felt awesome since I started taking it) and my doc (as well as I!) didnt want to take it any more.

So, my question is.. When Does this End? The cycle with health and no-heath, activity, vitality and optomism, vs the current state I am now in.
Has anyone gone into remission for a long period of time and/or continued to live a healthy, active lifestyle with limited or no perscriptions?

Your thoughts and experiences are always apperciated!

xo,

Chal

 

[Jirel]

As has been said before - most people who are doing well with their Lupus don't come to this site because they are busy living their lives and working, etc. I know that when I was doing better I didn't visit much. What I'm trying to say is that although WE may not have had a long remission of feeling well, that doesn't mean no one has.

 

[Maia]

There are several people on the site that have had years long remissions, some even able to go off all medications. It does happen. For many lupus is a mild illness, only requiring Plaquenil and occasionally NSAIDs for some pain control. We just don't tend to hear from them on this website as they don't feel a need to come here for support or information about lupus - & they're too busy to come here too most likely!

Personally, I went into remission while pregnant and for the first 3 months after delivery too I am on relatively few meds (two prescription plus low dose aspirin) but definitely do not feel well/healthy. However, I am managing and able to do most of the things I want to... much of the time... with some modifications. There are times when I can't do much of anything though too.

I think there is hope for full remission again. I have to hold onto that...

 

[Lyn57]

Hi Chal

I am one of those people who have had long remissions. I am happy to report that it does happen and when it does it is BRILLIANT. I recently joined this site when I had my first serious flare in 8 years! Thats right, pretty healthy, with just occassional aches and pains for 8 years.

All I can say is keep looking after yourself and do everything to make your life happy and as healthy as possible. (not easy with Lupus I know).

My recent flare last about 8 weeks and I found so much support and help on this site, it was amazing. I am now feeling much brighter and a visit to the rheumi yesterday confirmed the lupus doing well, the fibromyalga slightly flaring. I am not on any lupus meds - just a high dose burst of pred to get me through the flare and I am off that now.

It is true, I tend to not visit this site every day anymore, just once or twice a week at most which makes me feel a bit fickle actually!

We (hubby and I) are off next Friday to travel up north with our 4 wheel drive and I am even camping for some of that time! Something that I thought I would never be able to manage back when I was in my twenties and thirties. (am now 51) Amazing but true.

Keep up your treatments and best of luck with attaining a remission soon.

Sending you a big hug and lots of love. :hug:

Lyn x

 

[Katharine]

Hi,

I had a two year remission which ended just over two years ago, before I was diagnosed, so no meds at that time.
It was lovely and helps remind me that what I'm going through every day is not the normal me and that I haven't become a lazy slob!

I would be very happy now for medication induced remission which, I think, is more common than remission with no meds.

Katharine

 

[sushi]

ive had lupus for almost 20 years now and in the first 18 never took any meds at all. i had no joint pain my only symtom was a rash. then i went into a small flare which i think i contributed to because i was abusiing my body,

working overnight taking care of the family, not getting enough sleep and i have to admit i was partying too much and all that also contributed to my depression which is no longer there.

now i feel like my normal self again i take better care of myself. and i also listen to when my body tells me its time to rest.

im only on plaquenil and an aspirin a day.
so yes it is very possible. good luck

 

[lazylegs]

Hi Chal,

A normal life is possible for many. You need to learn to listen to your body and alter your activity level if necessary. Until 3 years ago the lupus was always active but I managed to lead a fairly normal life with minimal medication. Yes there will be times when you can't, but don't give up hope.

Take care,
Lazylegs