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On Medication For Seronegative Sle. Feeling Tired, Sleepy And Sensitivity To Sun. Any Thoughts?
Question: how common is sero negative sle? i was diagnosed by prof XXXXXXX hughes in london with sle 7yrs ago, the rheumatologists in Aberdeen hospital won't accept his diagnosis although i'm on all the meds for it. plaquenil, mepacrine, aspirin, clonazepam tramadol are just a few. i am on prednisolone virtually full time or my system just can't function. i'm so fed up of being useless and so very tired. when i sit down, i sleep, im in bed by 8pm and i have a severe sensitivity to the sun. very isolating! what do you think? thank you, XXXXXX
Hi XXXXXX
Thanks for posting your query.
Sero-negative SLE exists but is rare in adults and is usually associated with other auto-antibodies like anti-Ro or anti- dsDNA. Most sero- negative patients eventually develop the auto-antibodies.
Repeated serology titres annually or depending on the flares is required to adjust the treatment dosage of prednisolone.
I understand your suffering, SLE is a difficult disease. It needs continuous monitoring and careful watching for the flare ups and response to treatment.
Exposure to ultraviolet light causes flares of SLE in approximately 70% of patients probably by inducing apoptosis or death of the skin cells.
You were diagnosed with SLE 7 years ago and prednisolone has helped you. I do not doubt the diagnosis of Prof. XXXXXXX Hughes.
More than the skin flare ups, it is the kidney which is at more risk in SLE.
My suggestion to you would be to continue to take Prednisolone. Get renal function test and urine routine test done annually to look at the status of your kidney.
Belimumab is the latest drug tried in SLE. You may speak about this with your treating doctor.
Please do not be disheartened, complete sustained remission is rare in SLE.
Continued medications improve the quality of life.
Please do write back for further discussion on this.
I wish you good health.
Regards,
Thanks for posting your query.
Sero-negative SLE exists but is rare in adults and is usually associated with other auto-antibodies like anti-Ro or anti- dsDNA. Most sero- negative patients eventually develop the auto-antibodies.
Repeated serology titres annually or depending on the flares is required to adjust the treatment dosage of prednisolone.
I understand your suffering, SLE is a difficult disease. It needs continuous monitoring and careful watching for the flare ups and response to treatment.
Exposure to ultraviolet light causes flares of SLE in approximately 70% of patients probably by inducing apoptosis or death of the skin cells.
You were diagnosed with SLE 7 years ago and prednisolone has helped you. I do not doubt the diagnosis of Prof. XXXXXXX Hughes.
More than the skin flare ups, it is the kidney which is at more risk in SLE.
My suggestion to you would be to continue to take Prednisolone. Get renal function test and urine routine test done annually to look at the status of your kidney.
Belimumab is the latest drug tried in SLE. You may speak about this with your treating doctor.
Please do not be disheartened, complete sustained remission is rare in SLE.
Continued medications improve the quality of life.
Please do write back for further discussion on this.
I wish you good health.
Regards,
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
thank you for you're kind reply Dr. Shanthi. i have had 1 positive for lupus anti-coagulent. I attend St Thomas's once a year for the plethora of blood tests and every single time there has been blood/protien in my urine, i was "holding water" and my blood pressure was 204/180 but London didn't do anything so my own GP put me on water pills but bp hasn't been checked again. i was extremely low on vit d so i've been put on large chewable tabs for that. i managed to wean myself completely off pred for 7 months but i had to give in 4 days ago. my doc lets me regulate it myself as long as i tell him what i've done. usually within 2 days of being back on it i feel a lot better, but, not this time. i'm taking 15mg per day this time then i taper it down to a maintenance dose of 2.5mg. Its not working, i feel really ill, i have chest pains, dizzyness and i just want to sleep but im always running to the toilet now! is the Belimumab in place of the hydroxychloriquine? my gp is excellent and will be willing to try anything that may help. i get this strange sensation of being awake inside but no strength to move even my eyelids, i force it and i manage, it just feels like sheer exhaustion. and thats in the morning after being in bed from 7-8pm, i'm just so fed up. is it possible to save these posts in a file on my comp as i forget everything nowadays. Once again, thank you for your time, XXXXXX
Hi XXXXXX
Thanks for writing back.
It is in fact mandatory to do an annual urine routine for all patients with SLE.
Most patients with SLE develop Hypertension as in your case. Your blood pressure seems to be high and is a reflection of the on-going immunological activity in your kidneys.
It is good that you are on water pills, please continue them. You also need to check your blood pressure at regular intervals.
It is not a good idea to wean you completely off the prednisolone. Please realize that it is very important and prednisolone is the drug of choice in SLE to prevent long term renal complications.
You may require a continuous maintenance dose of 5mg of predsnisolone.
Since you are on water pills, you tend to run to the toilet often. This is expected.
Belimumab is not in place of Hydroxychloroquine. It is a monoclonal antibody that has been recently approved by the FDA for use in SLE and has shown good results.
I am glad that you have an excellent GP who understands your needs. Please talk to him about these options.
You can very well save these files. In case you do not do it, it will always be present on your dashboard on XXXXXXX which you can access anytime for reference.
Hope this helps you XXXXXXX
If you have no further queries, please close the discussion and write a review.
Thanks.
Thanks for writing back.
It is in fact mandatory to do an annual urine routine for all patients with SLE.
Most patients with SLE develop Hypertension as in your case. Your blood pressure seems to be high and is a reflection of the on-going immunological activity in your kidneys.
It is good that you are on water pills, please continue them. You also need to check your blood pressure at regular intervals.
It is not a good idea to wean you completely off the prednisolone. Please realize that it is very important and prednisolone is the drug of choice in SLE to prevent long term renal complications.
You may require a continuous maintenance dose of 5mg of predsnisolone.
Since you are on water pills, you tend to run to the toilet often. This is expected.
Belimumab is not in place of Hydroxychloroquine. It is a monoclonal antibody that has been recently approved by the FDA for use in SLE and has shown good results.
I am glad that you have an excellent GP who understands your needs. Please talk to him about these options.
You can very well save these files. In case you do not do it, it will always be present on your dashboard on XXXXXXX which you can access anytime for reference.
Hope this helps you XXXXXXX
If you have no further queries, please close the discussion and write a review.
Thanks.
Note: For further information on diet changes to reduce allergy symptoms or to boost your immunity, Ask here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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