Question:
hi all, i have been dx with lupus last month. i am basically a ‘newbie’ and would like to hear all about the symptons, medication, dosages taken, experiences with docs.. i have been dx based on positive ANA, high Anti ds dna, low C3,C4 complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone (30mg) once in the morning for a week and seriously, the first day I took pred., my fingers stopped swelling, body stop aching by lunch time. It was so quick!! But as I continued taking pred. I noticed I become very stressed, easily agitated, headache, heartburn, can feel my pulse racing at times. Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels a little swollen, like water-retention but does not hurt. One thing I notice though is I am no longer having headache. i am currently under the care of the nephorology clinic, which is by accident really. I wanted to see a rheumatologist but he was fully booked, so they referred me to a consultant physician, which happens to be in nephorology clinic. bin
Response:
Hi Bin, I am sorry about your diagnosis. It is a lot to take in at first. I would like to welcome you. I do hope we can help. You may have noticed that it is quiet around here on weekends. Others will reply soon. Forgive me if I don’t answer all of your questions at once. The prednisone question is a good place to start. I have trouble with my wrists, hands and fingers too. I had to go back on pred two or three time this year for that reason. One episode caused so much swelling in my finger that circulation to the end of it was getting cut off. I usually start at 20mgs for this problem. I stay on that for a week, then reduce to 15 for a week, then to 10, then 5, then off it. I wonder if the drop from 30mgs to 15mgs was too big for you. Predisone makes a lot of us feel like we could easily become axe murderers. <g> It can make you crazy with mood swings, so you are not alone with the side effects you described. I was absolutely nuts at 60mgs. I am on Imuran now. It is not for everybody, but it has allowed me to get off the prednisone. I will write more to you another time. I am tired at the moment, so I must bow out for now. BJ-Sk. Canada "hooi bin" <ch…@tm.net.my> wrote in message
news:404b46eb$1_2@news.tm.net.my… – Hide quoted text — Show quoted text -> hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin
Response:
- Hide quoted text — Show quoted text -hooi bin wrote: > hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin
Hello bin, I’m glad you posted. Good to meet you. As BJ said things are quiet here. I’m having all kinds of computer problems, so haven’t been posting lately. I’m glad your headaches are gone. I can’t speak to Prednisone, never having taken it. My brother might have Lupus, he can’t get to a rheumatologist either. I find it interesting that you are from Malaysia? Would you be interested in putting yourself on Shelagh’s map? Its here http://members.shaw.ca/tiderington/index.htm Left side, there’s a globe. Some of our posters are on the map. You can point at the others’ messages and see what they wrote in theirs first to give you an idea, then locate approx where you live and "post" with the red thumb tack. I caution you not to put personal inforamation there, nor specifics here, but perhaps you know already (things like address, phone number etc, are discouraged on newsgroups). Post often, I look forward to getting to know you. J
Response:
Hi Bin! – Hide quoted text — Show quoted text -"hooi bin" <ch…@tm.net.my> wrote in message <news:404b46eb$1_2@news.tm.net.my>… > hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin
Response:
Thank you all for the warm welcome, it is nice to have somone who knows and understand this lupus condition.. I almost forgot a little introduction, my name is bin, 27, female from Kuala Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful job together, ain’t good for lupus but i need the $$$$ !! Thanks BJ, J and Wesley for taking time to reply. Again, thanks.
Response:
You certainly do have stressful days. I’m happy you found this news group (ng). 20 mgs of pred makes me the way you described. I just wanted to welcome you to the group, Bin. Others will give you more info on where to go for medication and other useful links. 7:02 A.M. in Livingston, Tx. Spring break for my two sons and hubby (the rat took off from work this week <g>) "I" gotta get ready for work. Again Welcome, Bin. Dawn "hooi bin" <ch…@tm.net.my> wrote in message
news:404c602a$1_2@news.tm.net.my… – Hide quoted text — Show quoted text -> Thank you all for the warm welcome, it is nice to have somone who knows and > understand this lupus condition.. > I almost forgot a little introduction, my name is bin, 27, female from Kuala > Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful > job together, ain’t good for lupus but i need the $$$$ !! > Thanks BJ, J and Wesley for taking time to reply. Again, thanks.
Response:
Hi Bin, You are not kidding when you say that your work is stressful. The things we have to do for money!! Thank you for more details about yourself. We already know you better. You asked about experiences with doctors. Most of us have had some bad doctors, but some good ones too. I had trouble in the past with doctors that would not help me with pain management. I seem to have that straightened out now. Do you have organ involvement? My problems are mostly blood/nervous system issues. Of course, there are the usual joint problems. I look forward to hearing more from you. BJ-Sk. Canada "hooi bin" <ch…@tm.net.my> wrote in message
news:404c602a$1_2@news.tm.net.my… – Hide quoted text — Show quoted text -> Thank you all for the warm welcome, it is nice to have somone who knows and > understand this lupus condition.. > I almost forgot a little introduction, my name is bin, 27, female from Kuala > Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful > job together, ain’t good for lupus but i need the $$$$ !! > Thanks BJ, J and Wesley for taking time to reply. Again, thanks.
Response:
Thanks Dawn for the kind reply. I feel ok now, but notice if I go out or walk too much (especially ’shopping’), I would be extremely tired the next day, the my leg, toes would start to swell and I will have headache and feel awful. I’ll be seeing the doc the next week for more tests, BUN, creatine, F.E.M.E … Luv, Bin
Response:
Hello BJ, Thanks for replying!! I am not sure if I have organ involvement, how do you tell? The doc is a little ‘quiet’ at times and do not tell me things, and I on the other hand do not know what to ask!! I had a positive ANA of 5.67, high Anti-DS DNA 73.5 IU/ML, low C3 70.6MG/DL, low C4 7.8MG/DL. I have searched through the internet and C3,C4 has something to do with kidney? The doc has not done a urine test yet, but would be doing F.E.M.E, BUN and creatine next week…. I hope it will turn up ok but then again, I really HATE BLOOD TESTS!!!!!!!!!!!!!!!!!!!!!!! The last one left me with bruise for almost a week! aaargh… Currently on medication and only occassional swollen toes, calves, knees … it does not hurt really, so I am not complaining. Again, thanks! Bin "BJ" <B…@sk.nojunk.ca> wrote in message
news:104p5c2rnnajab4@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Bin, > You are not kidding when you say that your work is stressful. The things we > have to do for money!! Thank you for more details about yourself. We already > know you better. You asked about experiences with doctors. Most of us have > had some bad doctors, but some good ones too. I had trouble in the past with > doctors that would not help me with pain management. I seem to have that > straightened out now. Do you have organ involvement? My problems are mostly > blood/nervous system issues. Of course, there are the usual joint problems. > I look forward to hearing more from you. > BJ-Sk. Canada > "hooi bin" <ch…@tm.net.my> wrote in message > news:404c602a$1_2@news.tm.net.my… > > Thank you all for the warm welcome, it is nice to have somone who knows > and > > understand this lupus condition.. > > I almost forgot a little introduction, my name is bin, 27, female from > Kuala > > Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful > > job together, ain’t good for lupus but i need the $$$$ !! > > Thanks BJ, J and Wesley for taking time to reply. Again, thanks.
Response:
Hello J, Yup, I am from Malaysia and I have put myself on the map!! Cool websites!! Luv, Bin "J" <LoopH…@example.org> wrote in message
news:404BA67F.E110CC26@execulink.com… – Hide quoted text — Show quoted text -> hooi bin wrote: > > hi all, > > i have been dx with lupus last month. i am basically a ‘newbie’ and would > > like to hear all about the symptons, medication, dosages taken, experiences > > with docs.. > > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > > (30mg) once in the morning for a week and seriously, the first day I took > > pred., my fingers stopped swelling, body stop aching by lunch time. It was > > so quick!! But as I continued taking pred. I noticed I become very stressed, > > easily agitated, headache, heartburn, can feel my pulse racing at times. > > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > > a little swollen, like water-retention but does not hurt. One thing I notice > > though is I am no longer having headache. > > i am currently under the care of the nephorology clinic, which is by > > accident really. I wanted to see a rheumatologist but he was fully booked, > > so they referred me to a consultant physician, which happens to be in > > nephorology clinic. > > bin > Hello bin, I’m glad you posted. Good to meet you. > As BJ said things are quiet here. I’m having all kinds of computer problems, so > haven’t been posting lately. > I’m glad your headaches are gone. I can’t speak to Prednisone, never having > taken it. > My brother might have Lupus, he can’t get to a rheumatologist either. > I find it interesting that you are from Malaysia? Would you be interested in > putting yourself on Shelagh’s map? > Its here http://members.shaw.ca/tiderington/index.htm > Left side, there’s a globe. Some of our posters are on the map. You can point at > the others’ messages and see what they wrote in theirs first to give you an > idea, then locate approx where you live and "post" with the red thumb tack. > I caution you not to put personal inforamation there, nor specifics here, but > perhaps you know already (things like address, phone number etc, are discouraged > on newsgroups). > Post often, I look forward to getting to know you. > J
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