18yrs of Lupus

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lillash
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 12/3/2012 4:55 PM (GMT -6)   
Hi

Ive been reading some of the post regarding Lupus.

Im 34 yrs old and am an australian aboriginal who was diagnosed with lupus in 1994 and have had anything and everything that can be associated with lupus.

From molar rashes, joints, rhuematoid arthiritis, fatigue, endocarditis, pendicitis, liver issues, physcosis, pancreatitis, anemia, nephritis, avascular necrosis resulting in bilateal hip replacements, hair loss, epelipsy any many more....

I have been on varios medications over the past 18yrs and only in the past 5yrs have been diagnosed with lupus nephritis class V then a repeat biopsy this month confirmed i have both lupus nephritis 4a and 5. I have been on celcept for the past 5yrs and now i am about to line up to have iv cyclophosamaide and rituximub!!! I usually dive into treatment without hesitation but am really worried about the rituximub as its been 18yrs and now that im 34yrs old i dont know if my body will be able to handle anymore confused I have had cyclophismaide in the past and tollerated it after reading the warnings of rituximub im scared... Anyone out there has any information or have used rituximab? Pls share your experience shakehead

SICKOFSULPHITES
Regular Member


Date Joined Aug 2012
Total Posts : 36
   Posted 12/4/2012 1:24 AM (GMT -6)   
Just be aware of the total cyclophosphamide that you have to much and potential other problems,overdosage (but neccessary)caused my ex-wife to require hysterectomy at young age due to chemo causing ovarian failure.No experience of rituximub but read good reports on it.Really hope your treatment works for you.Take care hugs Paul

lillash
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 12/4/2012 1:54 AM (GMT -6)   
Thanks Paul... Ive had my family so babies are out for me... Lucky enough i started early before my lupus flared up properly. I have 3 beautiful children a boy aged 16 & 2 girls aged 14 & 10... So ovarian issues i can live with if the cyclophosamide is the option to try n get on top on this nephritis... I had cyclo 12 yrs ago but it was only a small dose over 6 weeks, this time ive been advised i will b havin 500mgs and 1000mgs of rituximab...then another round again in a few weeks??? Ive read a few reports on rituximab but am really concerned confused as i have had issues in all organs so im not as strong as i use to be... Im trying to remain positive but im a long way from home and the dr im seeing doesnt really know my full history apart from the past couple of years when my kidneys were affected...

lillash
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 12/6/2012 6:54 AM (GMT -6)   
Wow that was touching..great to hear you and your family are all well now... Thanks for the heads up, i will try anything at this stage! My aunt recomended noni juice in the past but i always went with western medication until recently a new dr i saw advised me to join chat rooms to explore what others have tried and recommend and he advisedme go to naturalists or chinese drs as western meds have advantages but also its disadvantages with side effects (which i know all about and with lupus being an immune disorder that simple changes in diet combined with other treatments can be beneficial to my overall health
Im going to order the limu juice n give it ago...will keep the community posted on how i go....
Thanks take acre now :-)
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 1:51 AM (GMT -6)
There are a total of 2,974,368 posts in 326,171 threads.
View Active Threads


Who's Online
This forum has 161245 registered members. Please welcome our newest member, Girlwcurl.
247 Guest(s), 0 Registered Member(s) are currently online.  Details