So tell me about remission. When someone says they are in remission does it mean they are on drugs and in remission, or they are off of drugs and in remission. Is there a statistic about Lupus and remission...like so many people experience remission after so many years (even if it is short lived)? Thanks for the info and the hope! Stacy
Talk to me about remission....
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Hi Stacy,
I'm possibly not the best person to answer this but anyway.
As far as I understand it, most people have medication induced remission. Indeed most docs would certainly not want to take you off all medication unless they were very sure that the remission was of the very longterm sort. The risks of doing that would be too high. They would then remove some of the medication but would maintain the ones that need a long time to get into your system and work (such as plaquenil).
I believe that remission without treatment is pretty rare - I was lucky enough to experience it for two whole years (I wasn't diagnosed then, hence no medication). Unfortuntately my flares are also rather "long" and now that I am no longer in remission we are having a bit of trouble actually controlling things.
hope that helps a bit,
Katharine
I'm possibly not the best person to answer this but anyway.
As far as I understand it, most people have medication induced remission. Indeed most docs would certainly not want to take you off all medication unless they were very sure that the remission was of the very longterm sort. The risks of doing that would be too high. They would then remove some of the medication but would maintain the ones that need a long time to get into your system and work (such as plaquenil).
I believe that remission without treatment is pretty rare - I was lucky enough to experience it for two whole years (I wasn't diagnosed then, hence no medication). Unfortuntately my flares are also rather "long" and now that I am no longer in remission we are having a bit of trouble actually controlling things.
hope that helps a bit,
Katharine
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Hi Stacy, I don't think that there is an absolute answer.I, like Katheren, would not think that a dr. would consider
taking someone off of the meds that are eliminating one's
pain. Right now, for the last two weeks, my severe pain is beginning to lessen quite a bit each day. I am assuming that it will continue, if I don't go and do something stupid.
Then, I hope, I will end up in remission, meaning that everyday will be a day that I can function like a normal person, though I think that the fatigue still stays. But, in no way would I alter my meds, why would I? this is the combination that is working for me. I hope that helps you.
Be well.:wink2:
Hi Stacy,
This one always confuses me too! My dermy used the term 'remission' to me at my last visit in September because my joint and muscle pain had gone plus all my bloods were perfect.
She spoke about 'medicated remission' due the fact I was on Plaq. My hubby and I are both wary of using the term and tend to say that my lupus isn't currently active - although that has changed a bit in the last week
I agree that remission is usually due to some kind of treatment/medication.
Hope this helps.
Hugz,
Pam xxx
This one always confuses me too! My dermy used the term 'remission' to me at my last visit in September because my joint and muscle pain had gone plus all my bloods were perfect.
She spoke about 'medicated remission' due the fact I was on Plaq. My hubby and I are both wary of using the term and tend to say that my lupus isn't currently active - although that has changed a bit in the last week
I agree that remission is usually due to some kind of treatment/medication.
Hope this helps.
Hugz,
Pam xxx
it's worth remembering that the people who go into long term full remission (no symptoms no drugs) do not tend to post here (why would they ?) so it may well happen more than we think. Who knows, I certainly don't.
A person can go into either full remission (no drugs) or drug induced remission (still on medication).
PErsonally I would be grateful for either state, I have never got any where near any sort of remission
raglet
A person can go into either full remission (no drugs) or drug induced remission (still on medication).
PErsonally I would be grateful for either state, I have never got any where near any sort of remission
raglet
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8,577 Posts
Stacy,
I had a long remission that lasted about 6.5 years. I was on no medication during that time frame. I know I read recently in The Lupus Book that long remissions do not usually happen in patients with internal organ involvement. I don't have internal organ involvement from my lupus and at the time of my remission my Scleroderma hadn't really started yet.
Different doctors do tend to have different meanings when they say remission. My first rheumatologist used to use the term all the time and all it would mean is that for a 2-4 week period my disease process was stable.
I remember when I first joined this site about 5 years ago, which was a couple months after I came out of remission, someone told me that people who come out of long term remission tend to get much sicker than they were before. I have never found anything to back up that statement except the fact that I am much worse off this time around.
I don't think about going into another remission, partially because it is very unlikely. I haven't looked up statistics recently but I think I remember seeing that less than 5% of all lupus patients will go into remission. I try and focus on the good I can find in today rather than expecting a remission. This disease isn't fun to live with but inspite of all my pain and other issues I still live a fulfilling life. A changed life but it is still good. My life is not what it was before at all and letting go of some dreams made room for new ones.
There is a good book called New Hope for People with Lupus by Theresa Foy DiGeronimo that used to be available from Amazon and probably still is. It is a good book for newly diagnosed patients. We need to learn to live our Lupus rather than always fighting it.
Take care,
Karen
I had a long remission that lasted about 6.5 years. I was on no medication during that time frame. I know I read recently in The Lupus Book that long remissions do not usually happen in patients with internal organ involvement. I don't have internal organ involvement from my lupus and at the time of my remission my Scleroderma hadn't really started yet.
Different doctors do tend to have different meanings when they say remission. My first rheumatologist used to use the term all the time and all it would mean is that for a 2-4 week period my disease process was stable.
I remember when I first joined this site about 5 years ago, which was a couple months after I came out of remission, someone told me that people who come out of long term remission tend to get much sicker than they were before. I have never found anything to back up that statement except the fact that I am much worse off this time around.
I don't think about going into another remission, partially because it is very unlikely. I haven't looked up statistics recently but I think I remember seeing that less than 5% of all lupus patients will go into remission. I try and focus on the good I can find in today rather than expecting a remission. This disease isn't fun to live with but inspite of all my pain and other issues I still live a fulfilling life. A changed life but it is still good. My life is not what it was before at all and letting go of some dreams made room for new ones.
There is a good book called New Hope for People with Lupus by Theresa Foy DiGeronimo that used to be available from Amazon and probably still is. It is a good book for newly diagnosed patients. We need to learn to live our Lupus rather than always fighting it.
Take care,
Karen
It hardly makes a statistic but I too was far worse off after my two year remission (bearing in mind it was also non medicated and still undiagnosed). I have now had two years of pretty severe symptoms though, I am also lucky not to have any organ involvement. I don't think about going into remission either, I would just like to control this enough to live almost normally again.
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300 Posts
Hi Stacy,
I was feeling well enough to stop taking my meds in November 2006. (not excatly what the doctor wanted, but what I wanted)
I wanted them all out of my system before I got pregnant. Aside from a few minor symptoms, I've fortunately felt fine. Is that remission..?? who knows? I do not have any internal organ involvement so that seems to be the key.
I think Karen is right on about the organ involvement. Ive never read about someone with extensive SLE going into remission.
Basically, I guess everyone's lupus is different. One person can't tell another person what will happen.
Best of luck to you!
Sharon
I was feeling well enough to stop taking my meds in November 2006. (not excatly what the doctor wanted, but what I wanted)
I wanted them all out of my system before I got pregnant. Aside from a few minor symptoms, I've fortunately felt fine. Is that remission..?? who knows? I do not have any internal organ involvement so that seems to be the key.
I think Karen is right on about the organ involvement. Ive never read about someone with extensive SLE going into remission.
Basically, I guess everyone's lupus is different. One person can't tell another person what will happen.
Best of luck to you!
Sharon
i was dxd 19 years ago and never had to go on any medication i didnt even take plaquenil.
no pain anywhere in my body so i can say that it was remission. im on plaquenil now and an aspirin a aday.
i dont know if having chostocondritis is due to my lupus because aside from my skin rashes (my arms) i have no other symtom.
no pain anywhere in my body so i can say that it was remission. im on plaquenil now and an aspirin a aday.
i dont know if having chostocondritis is due to my lupus because aside from my skin rashes (my arms) i have no other symtom.
I think my only remission was my "pregnancy induced remission". It's the only time I felt "good"/"normal" since diagnosed. I was still on medication although I went to a lower dose for that time period so it would be called medicated remission too I guess!
I had about 2 months of feeling much better than normal b4 I got pregnant too
I think long term remission is on the rare side, shorter term remissions are more frequent in comparison. And the vast majority of remissions would be while you are still on medication, because few patients will want to go off medication once remission is achieved. I know I won't go off medication again, even if the doctor tells me too. I'll just find another doctor...
I had about 2 months of feeling much better than normal b4 I got pregnant too
I think long term remission is on the rare side, shorter term remissions are more frequent in comparison. And the vast majority of remissions would be while you are still on medication, because few patients will want to go off medication once remission is achieved. I know I won't go off medication again, even if the doctor tells me too. I'll just find another doctor...
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339 Posts
Interesting subject.
I had a 7 year remission but at the time thought I had RA not Lupus. I came off all drugs for about 5 years of that.
Ive been back in a flare for nearly 2 years after a 12 hour stomach virus started it all up again.
Recently rediagnosed with Lupus but no organ involvement thank goodness.
Im am now thinking Im nearly back in remission again as Im feeling much more like my old self and only take 5mg of Prednisilone.
It seemed like the fatigue would never lift but the last few weeks even that has improved no end.
Mind you I do forget what normal is as even feeling this good is such an improvement that you dont realise until someone questions your stamina that you are maybe not quite back to normal.
Just wanted to tell you my story as I know when you are in a bad flare to hear that it does happen gives you some hope to get through it.
Good luck and recurring remissions to you all.
Sal xx
I had a 7 year remission but at the time thought I had RA not Lupus. I came off all drugs for about 5 years of that.
Ive been back in a flare for nearly 2 years after a 12 hour stomach virus started it all up again.
Recently rediagnosed with Lupus but no organ involvement thank goodness.
Im am now thinking Im nearly back in remission again as Im feeling much more like my old self and only take 5mg of Prednisilone.
It seemed like the fatigue would never lift but the last few weeks even that has improved no end.
Mind you I do forget what normal is as even feeling this good is such an improvement that you dont realise until someone questions your stamina that you are maybe not quite back to normal.
Just wanted to tell you my story as I know when you are in a bad flare to hear that it does happen gives you some hope to get through it.
Good luck and recurring remissions to you all.
Sal xx
I had a 20+ year remission from around the age of 15 or 16 through around 36. Part of this "remission" was because I didn't go to the doctor. At the time I went into the remission, I had no real organ or blood problems outside of ITP.
Since coming out of remission, my blood problems have multiplied and I've been diagnosed with nephritis.
The person who owns one of the Lupus lists uses the word "submission" for remission while on medication.
Cellcept has effectively put the lupus into "submission" for me. Even my tests are negative. This is something I've never had before.
audi
Since coming out of remission, my blood problems have multiplied and I've been diagnosed with nephritis.
The person who owns one of the Lupus lists uses the word "submission" for remission while on medication.
Cellcept has effectively put the lupus into "submission" for me. Even my tests are negative. This is something I've never had before.
audi
My kind of "remission"
Hello,
"Remission" to me means that my labwork is negative for active SLE.
It is periodically positive for Sjogren's (my SLE was characterized as mild
without organ involvement). I continue to
take maintenance meds like Plaquenil (just posted in Medications Forum because I'm considering changing to the generic and wondered what others experienced with the brand vs. the generic) and
I continue to have symptoms of muscle aches, joint pains which are fairly controlled and contained by Advil (too much though!).
Also, the numbing fatigue of lupus continues to be with me...ever present and every looming.
Since I'm almost 65 years-old and have probably had this "constellation" of autoimmune issues,
obviously one can survive my kind of lupus with my kind of remission and eventually learn
to manage it.
Raglet is right about people not posting as much when they are fairly well. I also believe that being a regular on a forum requires a very deep commitment like Clare has and others here.
To teach, to share and to support.
I have to be selective about commitments with
precious energy. But maybe I'll be able to be more available to others here to help in whatever way is possible with the new year and older grandchildren.
Hope this makes some sense. I hope it creates some "hope". It's there. The challenge of lupus seems to me to be the same as the challenge of life - living well with as much satisfaction and meaning as possible. With as much quality as one can create!
Always as long as possible!
Love to all and hope the new year brings hopeful new beginnings.
Cyrenatee
Hello,
"Remission" to me means that my labwork is negative for active SLE.
It is periodically positive for Sjogren's (my SLE was characterized as mild
without organ involvement). I continue to
take maintenance meds like Plaquenil (just posted in Medications Forum because I'm considering changing to the generic and wondered what others experienced with the brand vs. the generic) and
I continue to have symptoms of muscle aches, joint pains which are fairly controlled and contained by Advil (too much though!).
Also, the numbing fatigue of lupus continues to be with me...ever present and every looming.
Since I'm almost 65 years-old and have probably had this "constellation" of autoimmune issues,
obviously one can survive my kind of lupus with my kind of remission and eventually learn
to manage it.
Raglet is right about people not posting as much when they are fairly well. I also believe that being a regular on a forum requires a very deep commitment like Clare has and others here.
To teach, to share and to support.
I have to be selective about commitments with
precious energy. But maybe I'll be able to be more available to others here to help in whatever way is possible with the new year and older grandchildren.
Hope this makes some sense. I hope it creates some "hope". It's there. The challenge of lupus seems to me to be the same as the challenge of life - living well with as much satisfaction and meaning as possible. With as much quality as one can create!
Always as long as possible!
Love to all and hope the new year brings hopeful new beginnings.
Cyrenatee
This is a really interesting question for me as I was dx 2+ years ago and haven't come anywhere near a remission symptom wise but my labs ACL and ANA slowly came down to the negative range after being on plaqunil/prednisone and others for a year (they have remained down for the past year). My symptoms over time have changed though and become more debilitating. No organ involvement that we know of but I do have significant neurolgic issues.
I feel like my lupus is pretty chronic and consistent day in and day out. It is interesting to hear what those more experienced have to say.
I feel like my lupus is pretty chronic and consistent day in and day out. It is interesting to hear what those more experienced have to say.
Forgot an important component of "remission"
Hello,
In my previous post trying to characterize my "remission",
I forgot to talk about an important component. Sorry.
And, to me, it is major.
That is that I haven't had a flare serious enough to warrant taking
prednisone since 2002. That is the way I define remission as I consider
the whole picture.
Even though the everyday symptoms continue...joint pain, muscle aches,
sometimes parotiditis and rashes as well as
precarious energy level compromised by fatigue...
and I continue to take meds like plaquenil and synthroid,
I haven't needed to take pred.
Remission, again, very subjectively, is managing the symptoms rather
than having the symptoms manage and define me and my life.
Sometimes we simply do not have that choice. The illness is too big
But while my own autoimmune conditions remain quieter and smaller,
this is about as good as it gets! I realize that I am very lucky.
Hope this clarifies as bit.
Always with love (positive light and positive energies!), Cyrenatee
Hello,
In my previous post trying to characterize my "remission",
I forgot to talk about an important component. Sorry.
And, to me, it is major.
That is that I haven't had a flare serious enough to warrant taking
prednisone since 2002. That is the way I define remission as I consider
the whole picture.
Even though the everyday symptoms continue...joint pain, muscle aches,
sometimes parotiditis and rashes as well as
precarious energy level compromised by fatigue...
and I continue to take meds like plaquenil and synthroid,
I haven't needed to take pred.
Remission, again, very subjectively, is managing the symptoms rather
than having the symptoms manage and define me and my life.
Sometimes we simply do not have that choice. The illness is too big
But while my own autoimmune conditions remain quieter and smaller,
this is about as good as it gets! I realize that I am very lucky.
Hope this clarifies as bit.
Always with love (positive light and positive energies!), Cyrenatee
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