[Layla]

I have had lupus for a few years now. Of course there are many things I still don't understand. I am very curious about this remission thing...

so when you are considered in remission, is that just a statement based on blood work? Do you still have some symptoms? Are there days when you feel like you are flaring but your blood work doesn't show? And how long do flares last - can it be just for a few days? I know it's different for everyone, but it seems like once your doctor declares remission, you should be 'fine.'

And do the same things trouble you when you are not in a flare? sun sickness, stress, etc. ????

Sorry, it's all just so confusing.

Layla:sad:

 

[Katharine]

Hello Layla,

I think that for most people remission is medication induced and can be more or less long. During that time you may still not be 100% "normal" but will feel significantly better. For some, very rare, people they have been able to come off medication gradually.

I was lucky enough to have a two year remission where I felt no symptoms whatsoever and suddenly felt like I was eighteen again. That was actually before diagnosis so I wasn't on any meds and unfortunately all my symptoms came back more severely after.

I think that many people manage to attain "no disease activity" meaning no flares when under medication but a flare is always possible and people still have to be very careful about sun, lifestyle, pacing yourself... They will still feel more tired than without the disease but can manage everyday life better. This is what most of us would aim for while remembering that the disease is maddeningly unpredictable - that's where being careful about not provoking a flare is important.

I hope that helps a little. It is difficult to give a clear answer. The disease is already extremely varied and so are the ways people suffer from it. There is very little that can be described as "typical".

P.S. My blood work is "fine" for the moment - due to meds - but I am definitely not in remission. Blood work is not a very good indication of how we feel.

Katharine

 

[LoopyLoo]

Hi Layla,

I am still very unclear on what is remission and what isn't. I had a period of 8 months last year where I felt fantastic and my bloods were perfect - the term remission was used by my dermy.

Since January I've been unwell again and not once has my bloods indicated anything was going on. I'm pleased that my bloods are good as I'm told that there is no disease progression just a worsening of symptoms. It's frustrating when I am clearly in pain but I'm lucky that my GP knows not to trust my results.

Recently I saw a few different docs and I felt that I had to stress that my bloods don't always indicate my pain.

As Katharine says, you do still need to take the necessary precautions with the sun as this can induce a flare and bring some people out of remission.

I know I haven't cleared things up for you :hehe: but just given you my experience.

Hugz,

Pam xxx

 

[Layla]

Honestly... both of your answers help tremendously. I think we all get so frustrated through the diagnosis phase that we are wary of anyone that suggests we are "fine." My old rheum left a year or so after I was diagnosed and my stomach did flips while waiting to meet my new doc. I was so afraid she would say that it doesn't look like Lupus. It took so long for me to get the diagnosis in the first place!

I am really glad I found this site. It's always nice to know you are not alone with all of this! Thank you! Layla