Hey everyone, havnt been on this site for a while. Went the hospital on friday for a routine check up. After being treated for SLE for 3 and half years the doctor tells he thinks my SLE has gone. But keep taking plaqunil for at least another year.:shrug:
Lupus gone?
1 - 6 of 6 Posts
Joined
·
6,152 Posts
Congratulations Jem. You must be the first person in the world who has been cured! 
Seriously though, it seems like what he might have meant to say is that your Lupus is in remission. That can happen - all signs and symptoms can disappear and some people do indeed come off all medications. Others here on the board reported that they had long periods of remission but that Lupus came back at some point with a vengeance.
Are you feeling well with no symptoms? What is he he basing his assessment on?
Lupus is an incurable illness so its not something that can suddenly disappear. It may lie dormant but there is always the possibility that it comes back for another go.
If indeed he takes you off the Plaquenil next year and everything has been going okay up til then, make sure you have a plan of action with him should your symptoms return. I would also have a talk with him about what he means when he says your Lupus is 'gone'.
Best of luck and I hope it lasts a long time
Joan:rose:
Seriously though, it seems like what he might have meant to say is that your Lupus is in remission. That can happen - all signs and symptoms can disappear and some people do indeed come off all medications. Others here on the board reported that they had long periods of remission but that Lupus came back at some point with a vengeance.
Are you feeling well with no symptoms? What is he he basing his assessment on?
Lupus is an incurable illness so its not something that can suddenly disappear. It may lie dormant but there is always the possibility that it comes back for another go.
If indeed he takes you off the Plaquenil next year and everything has been going okay up til then, make sure you have a plan of action with him should your symptoms return. I would also have a talk with him about what he means when he says your Lupus is 'gone'.
Best of luck and I hope it lasts a long time
Joan:rose:
Hi,
Great news, though i think remission rather than cure is correct.
My sister who also has lupus ( mild and mostly skin and joints) has been in a non medicated remission for about seven years. Fingers crossed.
Our rheumie has discharged her with the proviso that she is re referred if symptoms arise.
Good luck
Great news, though i think remission rather than cure is correct.
My sister who also has lupus ( mild and mostly skin and joints) has been in a non medicated remission for about seven years. Fingers crossed.
Our rheumie has discharged her with the proviso that she is re referred if symptoms arise.
Good luck
That's very good news Jem! I suppose you are feeling well and symptom free and that he's not going by bloods alone. It's a good idea to keep on the Plaquenil and I suggest reducing it quite slowly just in case symptoms start up again.
I hope you'll be lucky and this turns out to be remission for life. It would be wise to do what you can to avoid possible triggers - get plenty of rest & don't overdo things or push yourself, a healthful diet, some exercise and sun avoidance if you had any skin problems or photosensitivity because that will not go. If you weren't photosensitive then it is still wise to be careful just as everybody needs to be for skin cancer concerns - no tanning beds and no sunbathing for a tan.
Then you need to be aware for any signs of trouble brewing and I would seek urine and blood tests every 6 months at GP. This can be a very sneaky disease.
Very best wishes !
Clare
I hope you'll be lucky and this turns out to be remission for life. It would be wise to do what you can to avoid possible triggers - get plenty of rest & don't overdo things or push yourself, a healthful diet, some exercise and sun avoidance if you had any skin problems or photosensitivity because that will not go. If you weren't photosensitive then it is still wise to be careful just as everybody needs to be for skin cancer concerns - no tanning beds and no sunbathing for a tan.
Then you need to be aware for any signs of trouble brewing and I would seek urine and blood tests every 6 months at GP. This can be a very sneaky disease.
Very best wishes !
Clare
Yahoo Gem, that is GREAT news. Remission is the goal of everyone here I'm sure! I agree with everyone, just be careful, and take good care of yourself, and watch that sunshine, and stress levels. Keeping yourself in remission is important.
I wish we could see more threads with the same news in here!
Congratulations!
Karin
I wish we could see more threads with the same news in here!
Congratulations!
Karin
1 - 6 of 6 Posts
Join the discussion
Join now to ask and comment!