Hi , I am having some trouble with lupus phycosis it is a horrible complication that I have not had for years I will be going to Dr on tues for cytoxan infussion and will tell him about what is going...
Hi all and thanks so much for all of the advice I just started on the zophran today we will see if it helps although nobody told me to let it dissolve in my mouth,so I took it with water oh well......
hi all hoping everyone is doing alright. I have been having some very bad gi problems severe nausea cramps going on about three weeks now I had a cytoxan treatment today so I can only think that this...
Hi everyone sorry I have not got back with a thank you for all of your kind words but I have been pretty sick . I really appreciate the support it really helps alot, I have gotten alot of good advice...
hi all, hope everyone is ok, I need some advice on my family. I live with my 28 yr old daughter ,son in law and 2 grandsons 2 & 8 I am the main financial support in the home I am sick off and on...
HI Miisscali! have you tried the ensure drinks they have alot of stuff in them to help keep your strength up I was in the medical field at one time we gave them to patients that where having trouble...
Hi all hope everyone is feeling well. well I have been in such horrific pain for the last few months was really out of ideas on what to do I could not function at all , not even everyday chores...
Hi Nasalady, I am so sorry you are having such a hard time I do not know about narcalepsy but your other symptoms sound familair probably to alot of folks here. when I stoped working due to my...
Hi Raven I am so sorry to hear you feel so rotten :( I to take the chemo every month I have the same side effects you are descibing , what helps me is plenty of fluids and PLENTY of quiet rest of...
Hi Marji, I think you have every right to be afraid myself I am scared to death I take cytoxan ,remicade and steroids I am very immunosuppressed my best friend called me late last night her son 12yrs...
Please if there is anyone out there who can just tell me what to do, I have been on cytoxan for about a year I just recently had my dose raised cuz of kidney problems it makes me soooo sick I hate...
Hi Rob, please dont do anything that drastic! we all have alot of the same problems as you do here I too had dental problems caused by lupus I had dentures by the time I was 30 and like you I have...
Hi Tj, to tell you the truth ambien gave me crazy dreams but as ginny said pred can do the same thing hopefully going back to 60 mgs will help her out in the sleep department it makes you feel worse...
Hi Tj, yes I did have bad headaches also got a spinal tap found elevated protiens but no infection I was also treated with alot of steroids it took a little while but it finally came under control I...
Hi, I also found out that I have no vit D at all I have been taking 50,000 iu twice a week plus 1000 iu over the counter daily in 6 mo that has risen my vit D from 0 to 7 and it should be at the...
OMG! your doc wont talk about certain isues like constipation or breast lumps?I agree with the others it may be time for a second opinion I can tell my doc ANYTHING I am so sorry that you are going...
Hi and welcome I am so sorry that you wife is suffering so bad right now I have had brain inflamation with lupus but never been told it was menengitis If she does indeed have lupus the rhumatologist...
Hi cm, and welcome! I too have horrible joint pain I can really relate to spending every day in the recliner, sadly the only thing that helps my joint pain is steroids I do take powerful pain meds...
Hi Syl, dont be scared I had a ssd mental exam just go in and let that doc know that you do have deppression be yourself mine took about 10 whole minutes I dont consider myself to have mental issues...
Hi everyone hope you all are good. I was wondering if anyone has had really bad muscle twitching and spasms I am having it in my arms legs and feet I am also having very painful spasms when I swallow...
Hi cg and welcome you will definatly find the support you are looking for here there are alot of kind poeple with alot of knowledge about this illness . I am so sorry you are in so much pain right...
Oh yes I have definatly had balance issues lupus can affect your brain as well as any other organ I have had such severe brain inflamation before that I had hallucunations ...but loss of balance and...
Hi Britt, I also have severe burning pain in my legs nothing helps, sorry you have to do EMG I know ive been there those do hurt alot. I am getting a MRI on th 11th to see if it is my back . do you...
Hi eveyone, I just wanted to get on and say thank you so much for all of the kind words and encouragment I have recieved here I have been feeling so bad lately and even though I have a wonderful...
Hi thanx so much to all of you it really helps to know you understand what I am going through I wont give up I have two beautiful grandsons and a wonderful daughter to stick around for,its just that...
Hi Geri and wellcome! as everyone has said you will find alot of support and understanding here I sure have, I am so sorry you are going through all of this it is very hard to deal with I know . I...
Hi all , as you know i have been having a hard time of it latley with the pain I went and had a cytoxan treatment tues and had a shot of steroids IV plus a shot in my hip that is supposed to last a...
Hi Jessierose, sorry to say cellcept did not help me either but I was on a thyroid med and switched to the generic and it gave me alot of problems now i am back on brand name and doing fine so maybe...
Hi, thanks Robin I went to rhumey today told him about it, I had a bone scan last time I was there and it showed that I have pretty bad osteoporsis so...he said it could be a fracture in my spine or...
Hi all, I have been having a real tough time of it lately with severe joint pain but I have a new symptom that I have never had before, I am getting this burning pain in my right front thigh and when...
thankx for the info weleetka i live in a town just east of okla city called midwest city right next to tinker air force base if you know where that is. I will not be going in the sun without some...
Hi all, the last couple of post i have wrote have been about how much horrible pain i have been having in all of my joints ,it hit me like a ton of bricks today reading someone elses post that it...
dont give up on the ssi get a lawyer! i got it the first time i applied with a lawyer they go back to the date when you first became disabled and pay you a lump sum from that date until now your...
Hi Robin nice to meet you my name is nona I am also pretty new here but have met alot of very understanding and kindhearted folks. It also took me a long time to get a correct diagnoses I have lupus...
Thanks so much you guys for all of the kind words and encouragement it really helps. I agree I do need some steroids I had to put off my cytoxan treatment cuz of a stress test I had to have and I get...
Hi I am having such terrible joint pain right now my ankles hurt so bad I can barely get around pain meds dont work anymore heat helps a little I want so badly to play with my 8&2 yrs grandsons...
Hi my name is nona i have had brain invovemnt with lupus sorry to say in can affect your brain in so many ways I have a seizure disorder now from the lupus and i have had periods of hallucinations...
HI Amy just thought i would share with you I am on cytoxan i have a infussion once every 4 weeks and i have done this for about a year and a half I hate t0 say it but i think this is the thing that...
thanks judy and amy for the warm welcome I get stress test mon to see if stent is closed I will keep you updated . I will stick around it is nice to have someone who understands the frustrations of...
Thanks so much Judy I go in mon for chemical stress test to see about the blockage I guess we will go from there depending on the results . I will definatly hang around I really need someone to chat...
Hi my name is nona i have had lupus and its many related complications for about 7 years now,i just found out today that the stent that ws placed in my heart about 1 yr ago prematurely i might add i...
Hi my name is nona i have had this symtom you are describing i dont remember what the medical term is but it is the cartlidge that holds your ribs together it becomes inflammed in active lupus i have...