Hey guys hope you are all well! Has anyones Lupus ever gone into remission?? I feel it seems to be some kind of mythical happening that can never be realised! how can you get into remission?? do you just have to take as many meds as possible and knock it out lol? i feel like im never gonna get there...everytime it goes away it only goes for a couple of months and then comes back with a vegence!!!!!!
Remission??? Is it a MYTH?!
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It seems to be a myth for me. I've been diagnosed for 2 1/2 years and have not been in remission.
The definition of remission is different I noticed for different people. For me remission is free of all drugs and no symptoms. Some will say they are in remission, but they are taking medication(s) that have the disease under control. I haven't met either definition yet. Granted there are times where I feel better, but not truly in remission or under control with medications.
I remain hopeful though that this will happen.
Nutty
The definition of remission is different I noticed for different people. For me remission is free of all drugs and no symptoms. Some will say they are in remission, but they are taking medication(s) that have the disease under control. I haven't met either definition yet. Granted there are times where I feel better, but not truly in remission or under control with medications.
I remain hopeful though that this will happen.
Nutty
It sounds like you are having short lived remissions lasting a few months and that is a very good thing! For me, the only time I would say I was in remission was when I was pregnant. I stayed on a reduced dose of Plaquenil and baby aspirin until late in the pregnancy so it was a remission with medication. It even lasted almost 3 months after baby was born too.
Other than that, I've never had a period of time without pain and fatigue of some degree. But I've read of several people here having years long remissions so it's definitely a real possibility and you have to hold onto hope.
Other than that, I've never had a period of time without pain and fatigue of some degree. But I've read of several people here having years long remissions so it's definitely a real possibility and you have to hold onto hope.
Hi,
I did have a remission. It was before I got diagnosed and lasted two years. I had been ill for several years prior to that but couldn't find out what it was.
Those two years were truly wonderful but they ended and the disease slowly came back, then not so slowly and it was even worse than before.
I think that spontaneous remission (without meds) is pretty rare and it is not something I'm aiming for. A lot of people who don't post here are in medicated remission and can stay that way for years. Some post here occasionally saying that they've been well for a good number of years. So, there is hope. It just depends what you feel you want to aim for. I can understand that having a couple of good months and then sliding back must be frustrating. Maybe you can help that a little by not overdoing it in those months...
I'll be quite happy to have this under control and that will most likely mean staying on meds.
sorry to not be more helpful with an answer,
Katharine
I did have a remission. It was before I got diagnosed and lasted two years. I had been ill for several years prior to that but couldn't find out what it was.
Those two years were truly wonderful but they ended and the disease slowly came back, then not so slowly and it was even worse than before.
I think that spontaneous remission (without meds) is pretty rare and it is not something I'm aiming for. A lot of people who don't post here are in medicated remission and can stay that way for years. Some post here occasionally saying that they've been well for a good number of years. So, there is hope. It just depends what you feel you want to aim for. I can understand that having a couple of good months and then sliding back must be frustrating. Maybe you can help that a little by not overdoing it in those months...
I'll be quite happy to have this under control and that will most likely mean staying on meds.
sorry to not be more helpful with an answer,
Katharine
Hi
I have not had a remission since my big flare in 2000... but I am sure my teenage illness was a lupus flare and the rheumy agrees. Which means I was OK for a long time (26 years) with just the odd protracted flu and the occasional kidney infection. I never got the fatigue again until my mid 40's or the joint pain. So that looks like a bit of a remission I suppose.
My new doc said he had one patient with very serious kidney involvement lupus where it had "burnt out" (his words) after about 13 years.
Not sure if this helps . Am longing for some remission myself... whatever happened to time off for good behaviour is what I want to know.:rotfl:
Sara
x
I have not had a remission since my big flare in 2000... but I am sure my teenage illness was a lupus flare and the rheumy agrees. Which means I was OK for a long time (26 years) with just the odd protracted flu and the occasional kidney infection. I never got the fatigue again until my mid 40's or the joint pain. So that looks like a bit of a remission I suppose.
My new doc said he had one patient with very serious kidney involvement lupus where it had "burnt out" (his words) after about 13 years.
Not sure if this helps . Am longing for some remission myself... whatever happened to time off for good behaviour is what I want to know.:rotfl:
Sara
x
Hi,
I think we lupies must all dream about remissions where others dream of fast cars, million quid, etc . . .
I too am DREAMING about remission!
I had a flare (undiagnosed, but hospitalised) in 2000 then fine until year and a half later where again undiagnosed but hosptialised with flare. Then again two years later and hospitalised again repeatedly for 6 months on and off and finally diagnosed!! Since then June 2004, I would say I have NOT ahd a remission meaning no symptoms. However I get definite periods where my serositis or transverse myeltits get a lot worse, with high fevers etc and I end up in hospital on methylpred iv infusions (this has happend over 30 times since june 2004). Some of the inbetween times I can be without the severe serositis pain but usually can be swamped with fatigue or joint pain etc. My longest time with no hospitalisable flare has been 7 months in the last 4 years. I hope this gets better as well!
I find I get this thing where whenever I try a new immunosuppressant I'm good for a while, then the lupus 'beats' it and I get really sick again and have to change it . . . .again - this is what I'm just trying to do again now. Does anyone else get this?
Cathy x
I think we lupies must all dream about remissions where others dream of fast cars, million quid, etc . . .
I too am DREAMING about remission!
I had a flare (undiagnosed, but hospitalised) in 2000 then fine until year and a half later where again undiagnosed but hosptialised with flare. Then again two years later and hospitalised again repeatedly for 6 months on and off and finally diagnosed!! Since then June 2004, I would say I have NOT ahd a remission meaning no symptoms. However I get definite periods where my serositis or transverse myeltits get a lot worse, with high fevers etc and I end up in hospital on methylpred iv infusions (this has happend over 30 times since june 2004). Some of the inbetween times I can be without the severe serositis pain but usually can be swamped with fatigue or joint pain etc. My longest time with no hospitalisable flare has been 7 months in the last 4 years. I hope this gets better as well!
I find I get this thing where whenever I try a new immunosuppressant I'm good for a while, then the lupus 'beats' it and I get really sick again and have to change it . . . .again - this is what I'm just trying to do again now. Does anyone else get this?
Cathy x
when i was first diagnosed 20 years ago, nobody ever told me that i had to follow up with a rhumatologist. so i went all those years without a symtom or a flare. and no medication at all. so that was remission for me. the only thing i got was a rash on my arms when exposed to the sun.
now i take plaquenil and an aspirin once a day. and still consider myself to be in remission. i hope and pray that everyone can go into remission from this awful disease.
now i take plaquenil and an aspirin once a day. and still consider myself to be in remission. i hope and pray that everyone can go into remission from this awful disease.
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Hi there,
I did have a remission for 7 years. I hadnt got diagnosis for Lupus then but I was ill with joint pain and fatigue etc for a couple of years. At that time I was diagnosed with RA. I changed my hectic work life and gradually got better. Then I finished all medication for 7 years and had hardly any symptoms. Mine restarted after a 12 hour sickness bug virus. Now Ive been fighting this flare for over 2 years again. Im currently back off all medication so suppose you could say I am in a sort of remission. Im off all the drugs mostly but I dont feel as good as the first time I had remission. Struggling with fatigue and weakness but suppose thats fairly good. Im still tentatively hoping I can stay fairly well without medication but time will tell Im sure.
I must say even the remission I had before I dont think I ever regained the full strength and energy I had when I was younger but maybe that is to do with age and extra weight maybe.
Hope you get some respite from it all soon. You do have to remember even when you feel good not to push yourself too hard. Its difficult I know.
Good luck,
Luv Sal x
I did have a remission for 7 years. I hadnt got diagnosis for Lupus then but I was ill with joint pain and fatigue etc for a couple of years. At that time I was diagnosed with RA. I changed my hectic work life and gradually got better. Then I finished all medication for 7 years and had hardly any symptoms. Mine restarted after a 12 hour sickness bug virus. Now Ive been fighting this flare for over 2 years again. Im currently back off all medication so suppose you could say I am in a sort of remission. Im off all the drugs mostly but I dont feel as good as the first time I had remission. Struggling with fatigue and weakness but suppose thats fairly good. Im still tentatively hoping I can stay fairly well without medication but time will tell Im sure.
I must say even the remission I had before I dont think I ever regained the full strength and energy I had when I was younger but maybe that is to do with age and extra weight maybe.
Hope you get some respite from it all soon. You do have to remember even when you feel good not to push yourself too hard. Its difficult I know.
Good luck,
Luv Sal x
Remission??? Is it a MYTH?! I judt do not know as it all depends on how one defines "remission".
If one means "cure", that is, a permanent disappearance of symptoms, I suspect it is right up there with the Easter Bunny.
If one means a limited period of time in which one enjoys a complete disappearance of symptoms, I have never had such. I have had periods when some symptoms vanished only to be replaced by others.
If one means a period in which one feels so much better than at its worst then I think remission is real.
This is based on my experience and what I have gleaned form various medicos.
And I may be completely wrong.
All the best!
Douglas+
If one means "cure", that is, a permanent disappearance of symptoms, I suspect it is right up there with the Easter Bunny.
If one means a limited period of time in which one enjoys a complete disappearance of symptoms, I have never had such. I have had periods when some symptoms vanished only to be replaced by others.
If one means a period in which one feels so much better than at its worst then I think remission is real.
This is based on my experience and what I have gleaned form various medicos.
And I may be completely wrong.
All the best!
Douglas+
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339 Posts
I think you explained that just right Douglas.
Sal x
Sal x
I've had times when I felt better and times when all my symptoms went haywire and piled on all at once. Right now, the terrible neuropathy in my feet has disappeared. I'm so grateful! My hands are not so painful and I'm happy about that. This is a good time, I think, nerve-wise. I have been able to drive for months now without a big break. Maybe a day or two of swimmy head, but nothing long term. When I can drive, I consider myself mostly well even if I am having fevers and lots of pain and fatigue.
I dream of a remission when I can take off my hat and over-shirt and run outside in the wind and sun with bare head and arms and feel the sun on my skin without fear. I dream of a remission when I can make plans and know I can keep them.
With our without meds, when either of those days come, I will consider myself in remission.
I dream of a remission when I can take off my hat and over-shirt and run outside in the wind and sun with bare head and arms and feel the sun on my skin without fear. I dream of a remission when I can make plans and know I can keep them.
With our without meds, when either of those days come, I will consider myself in remission.
Hi Mooks,
A lot of sources will say wait until you've been in remission before getting pregnant, but it isn't essential.
It is very much to be disired that you do not have active nephritis or active organ threatening disease, and also that you are not needing chemotherapy. Methotrexate and cyclophosphamide are both contraindicated in pregnancy. Methotrexate is actually used to indice clinical abortions in some places, so obviously you can't take it if you want to be pregnant.
But complete remission isn't compulsory. If your disease is mild and fairly well controlled with medications (prednisolone, plaquenil and azathiprine can all be used in pregnancy), you don't need to put it off hoping for better days.
If you want to try to concieve, it is a good idea to have a pre conception appointment with an obstetrician. You go to St Thomas' right? They have a special pregnancy unit for lupus patients, so call them and get their advice.
All the best:blush:
X C X
A lot of sources will say wait until you've been in remission before getting pregnant, but it isn't essential.
It is very much to be disired that you do not have active nephritis or active organ threatening disease, and also that you are not needing chemotherapy. Methotrexate and cyclophosphamide are both contraindicated in pregnancy. Methotrexate is actually used to indice clinical abortions in some places, so obviously you can't take it if you want to be pregnant.
But complete remission isn't compulsory. If your disease is mild and fairly well controlled with medications (prednisolone, plaquenil and azathiprine can all be used in pregnancy), you don't need to put it off hoping for better days.
If you want to try to concieve, it is a good idea to have a pre conception appointment with an obstetrician. You go to St Thomas' right? They have a special pregnancy unit for lupus patients, so call them and get their advice.
All the best:blush:
X C X
Hmmmm! Remission. I had my first real symptoms of Lupus back in mid-april this year (Just severe pain in knees and elbows). This lasted a few days. Then I had just very minor pains every now and then in one knee, or one shoulder etc until last month when I was severely ill, exhausted, pain everywhere etc.
In between April and the flare I was not on any meds. Could this be called Remission? Or is remission ONLY when there is no pain, symptom etc what-so-ever?
In between April and the flare I was not on any meds. Could this be called Remission? Or is remission ONLY when there is no pain, symptom etc what-so-ever?
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